REPORT FROM THE NINTH INTERNATIONAL WORKSHOP ON

Torch

January 2017

I W’ M FV .

Report from the Ninth, cont. on page 2

IWMF

newsletter

INSIDE THIS

ISSUE

Ninth International

Workshop ................... 1

IWMF Members

Sponsor Nine Young

Investigator Awards ... 5

President’s Corner ....... 6

Three Cheers for

Volunteers! ................. 7

Major Gifts to the

IWMF

.......................... 9

In Memoriam: Karen

Fosse Pindzola ........ 10

In the Torchlight ......... 11

Medical News

Roundup .................. 14

From a Daughter Who

Became Caregiver ... 17

From IWMF-Talk ......... 20

The Ninth International

Doctor-Patient

Forum ....................... 23

International Scene .... 26

WMFC Educational

Forum 2016 .............. 29

Support Group

News ........................ 31

Cooks’ Happy Hour ... 36

The Ninth International Workshop on Waldenström’s

Macroglobulinemia (IWWM9) was held in beautiful, historic

Amsterdam on October 5-8, 2016, at the Koepelkerk Conference

Hall. As has become customary, following the Workshop an

International Doctor-Patient Forum was held October 9, with

select speakers from the IWWM9 addressing a large crowd of

patient attendees from all over the world.

The chairpersons of IWWM9 were Dr. M.J. Kersten, Dr.

Monique Minnema, and Dr. Steven Pals from the Netherlands

and Dr. Steven Treon from the Dana-Farber Cancer Institute

in Boston. The Workshop Secretariat Christopher Patterson

at Dana-Farber once again admirably executed the complex

logistics of organizing a Workshop.

Over 250 of the world’s leading researchers and clinicians in

WM attended. The IWMF was represented by President Carl

Harrington; Elena Malunis, Vice President for Member Services; and Guy Sherwood, Vice

President for Research. IWMF Trustee Dr. Robert Kyle was also present, as was IWMF Trustee

and Scientiﬁc Advisory Committee Chair Dr. Stephen Ansell.

Before I start my hopefully brief and lucid summary of the scientiﬁc presentations, I would like to

highlight a few special events. At the beautiful

opening ceremonies held at the Westerkerk

Church (Google it!) on the evening of Thursday,

October 6, the prestigious Robert A. Kyle Award

was presented to a most deserving individual,

Dr. Zachary Hunter of the Dana-Farber Cancer

Institute in Boston. Many of you may remember

Zach as the young, soft-spoken but brilliant

researcher from Dr. Treon’s lab at Dana-Farber

who played a key role in the discovery of the

MYD88 mutation in WM. I have followed

Zach’s “career in WM” closely and was very

touched by this marvelous and well-deserved

achievement. Also on Thursday evening Lia van

Ginneken led a beautiful (and tearful) ceremony

where attendees lit a candle on a golden tree in

remembrance of family and friends lost to WM.

Sadly, I could have lit many candles that evening.

At the closing ceremonies held on the evening of

Saturday, October 8, at the Scheepvaartmuseum

REPORT FROM THE NINTH

INTERNATIONAL WORKSHOP ON

WALDENSTRÖM’S MACROGLOBULINEMIA

by Guy Sherwood, MD, Vice-President for Research

Dr. Guy Sherwood, IWMF

Vice President for Research

At the opening ceremonies of IWWM9, the Robert

A. Kyle Award was presented to Dr. Zachary Hunter

of the Dana-Farber Cancer Institute. From left to

right, Dr. Steven Treon, Dr. Kenneth Anderson,

Dr. Robert Kyle, and Dr. Hunter. At the closing

ceremonies, Dr. Kenneth Anderson, also of the

Dana-Farber Cancer Institute, received the

Jan Gosta Waldenström Award.

Report from the Ninth, cont. from page 1

Report from the Ninth, cont. on page 3

(the National Maritime Museum of the Netherlands – a spectacular museum and a thrill

for me personally as I love to sail) the Jan Gosta Waldenström Award was presented

to two very deserving individuals: Dr. Kenneth Anderson of the Dana-Farber Cancer

Institute in Boston and Dr. Roger Owen of Leeds Teaching Hospital, Leeds, UK (Dr.

Owen is currently a member of the IWMF Scientiﬁc Advisory Committee).

I have attended a number of these Workshops dating back to IWWM4 in Kos, Greece,

in 2007, and this year I marveled at the large number of attendees, particularly the new

faces, in Amsterdam. The Workshop followed its customary format: 12 sessions of

4-5 short 15-minute lectures, a poster and oral presentation session, and two “Great

Debates” sessions.

As listed below, the scientiﬁc program was divided into sessions highlighting particular

topics. The diagnostic workup of WM has been altered signiﬁcantly with the discovery

of the roles of the MYD88 and CXCR4 mutations in WM. In fact, the presence of these

mutations has overshadowed the previous standards in the diagnosis of WM. Clearly,

in the near future the diagnosis of WM will include genetic evaluation with respect

to these two mutations, and genetic evaluation will become the norm. Nonetheless,

WM patients will be heartened to know that bone marrow biopsies are still very much

indicated, as microscopic analysis and ﬂow cytometry offer important information and

direct, to some extent, the potential treatment strategies.

Session topics were: Session 1: Diagnostic Workup of WM; Session 2: Predisposition

in WM; Session 3: Malignant Transformation in WM; Session 4: Genomic Landscape

in WM; Session 5: Plenary Talks in WM; Session 6: Myddosome Signaling: What have

we learned? Session 7: CXCR4 WHIM Mutations and WM Pathogenesis; Session 8:

Non-MYD88 and CXCR4 Signaling in WM; Session 9: BTK Directed Therapy in WM;

Session 10: Poster Viewing Reception and Short Oral Presentations of Selected Abstracts;

Session 11: Novel Therapeutic Approaches for WM; Session 12: Great Debates in WM;

Sessions 13 and 14: Management of Speciﬁc Disease Morbidities in WM; Session 15:

Discussion: When should autologous transplant be offered to WM patients?

The amount of information was, to say the least, overwhelming, and rather than go into

great detail about each presentation, I was tasked with giving a general overview of

the conference, focusing particularly on the two Great Debates: “What should be the

frontline standard for treatment of WM?” and “What should be the goal of therapy in

2017 for WM patients?”

Dr. Kyle (Session 1) reminded the attendees that only symptomatic WM should be

treated. This may change in the future, but for the time being this mantra still stands.

OFFICERS &

TRUSTEES

FOUNDER

Arnold Smokler

PRESIDENT EMERITA

Judith May

PRESIDENT

Carl Harrington

SECRETARY-TREASURER

Cynthia Ruhl

VICE PRESIDENTS

Elena Malunis

Michael Sesnowitz

Guy Sherwood, MD

BOARD OF TRUSTEES

Stephen Ansell, MD

Peter DeNardis

Marlyn Friedlander

Sue Herms

Marcia Klepac

Robert A. Kyle, MD

Barry Nelson

Linda Nelson

BUSINESS OFFICE

Kathryn Launder, Operations Manager

IWMF SCIENTIFIC

ADVISORY COMMITTEE

Stephen Ansell, MD, Chairman

Mayo Clinic

Bart Barlogie, MD

Mount Sinai Hospital

James R. Berenson, MD

Institute for Myeloma &

Bone Cancer Research

Morton Coleman, MD

Weill Cornell Medical College

Meletios A. Dimopoulos, MD

School of Medicine,

University of Athens, Greece

Stanley Frankel, MD

Columbia University

Morie Gertz, MD

Mayo Clinic

Irene Ghobrial, MD

Dana-Farber Cancer Institute

Eva Kimby, MD

Karolinska Institute, Sweden

Robert A. Kyle, MD

Mayo Clinic

Véronique Leblond, MD

Hôpital Pitié Salpêtrière, France

Gwen Nichols, MD

Hoffmann-La Roche, Ltd.

Roger Owen, MD

St. James’s Institute of Oncology,

United Kingdom

Surinder Sahota, PhD

University of Southampton,

United Kingdom

Sheeba Thomas, MD

MD Anderson Cancer Center

Steven Treon, MD

Dana-Farber Cancer Institute

Brian Van Ness, PhD

University of Minnesota

Mary Varterasian, MD

EDITOR

Alice Riginos

ASSOCIATE EDITOR

Sue Herms

SUPPORT GROUP NEWS

Penni Wisner

CULINARY EDITOR

Penni Wisner

The IWMF Torch is a publication of:

International Waldenstrom’s Macroglobulinemia Foundation

6144 Clark Center Avenue • Sarasota, FL 34238

Telephone 941-927-4963 • Fax 941-927-4467

E-mail: [email protected] • Website: iwmf.com

INTERNATIONAL CORRESPONDENT

Annette Aburdene

IWMF-TALK CORRESPONDENT

Jacob Weintraub, MD

SENIOR WRITER

Guy Sherwood, MD

CARTOONIST

Linda Pochmerski

IWMF is a 501(c)(3) tax exempt

non-proﬁt organization

Fed ID #54-1784426. Waldenstrom's macroglobulinemia

is coded 273.3 in the International Classiﬁcation of Diseases (ICD) of the World Health Organization.

This publication is designed to provide information about the disease Waldenstrom’s macroglobulinemia.

It is distributed as a member service by the International Waldenstrom’s Macroglobulinemia Foundation,

Inc., to those who seek information on Waldenstrom’s macroglobulinemia with the understanding that the

Foundation is not engaged in rendering medical advice or other professional medical services.

FORMATTING & PRODUCTION

Sara McKinnie

PHOTOGRAPHER

Eleanor Levie

TORCH ADVISORY PANEL

Carl Harrington, Robert Kyle,

Judith May, Guy Sherwood

3IWMF TORCH Volume 18.1

Report from the Ninth, cont. from page 2

Report from the Ninth, cont. on page 4

With the advent of new techniques in genetic testing, we

will see increased knowledge regarding predisposition to

the development of WM in families where WM has been

diagnosed in a family member. We may also be able to

predict the development of WM in individuals with immune

system dysfunction, particularly defects in T-cell immunity.

Dr. Linda Pilarski from Alberta, Canada, (Session 3) has long

been a proponent of the idea of multiple clones and clonal

evolution in WM. We are well aware that IgM-MGUS is a

precursor to WM in all cases. Simply put, WM is a relatively

active disease in terms of genetic transformation, and we

now know that, in part thanks to Dr. Pilarski’s hard work and

dogged determination, multiple clones of WM usually exist

in patients.

Session 4 highlighted the discovery of the MYD88 and

CXCR4 mutations in WM that have revolutionized the

study of WM. Research is ongoing to determine what other

mutations exist in WM and how these new and yet-to-be-

discovered mutations may lead to its development. The ﬁrst

day ended with a plenary session (Session 5) that discussed,

among other topics, the mechanism of resistance to newer

treatments in WM such as ibrutinib/Imbruvica, clinical data

supporting the impact of the CXCR4 mutation on more

advanced and aggressive disease, and WM-speciﬁc serial

ﬂow cytometry assays to evaluate treatment response.

The second day of the conference started with a few sessions

(Sessions 6 and 7) in molecular biology that focused on

the MYD88 complex and signaling as well as an in-depth

look at the implications on a molecular level of the CXCR4

mutation(s). All are complicated topics that required a few

trips to the coffee urns for reﬁlls. The afternoon continued

with Session 8 in molecular biology, this time reviewing

non-MYD88 and CXCR4 signaling in WM, in particular

the B-cell receptor (BCR), BCL2 expression (BCL2 is a

regulatory protein implicated in cell death), and, ﬁnally, Dr.

Ansell’s discussion of his research in the regulation of IgM

secretion in WM.

The day’s sessions ended with a series of lectures focused

almost exclusively on ibrutinib/Imbruvica therapy in WM.

Dr. Constantine Tam from Australia presented an exciting

lecture on a newer BTK inhibitor BGB-3111 (somewhat

akin to ibrutinib) that has demonstrated some very good

preliminary results thus far in its trial of previously treated

WM patients.

The conference then adjourned to a new locale for Session

10 where a number of posters where exhibited and short oral

presentations were also held. A highlight was the presentation

of the Young Investigator Awards (YIAs), 11 in total, with

9 sponsored by the IWMF and one each sponsored by the

European Waldenström Network and WM-Italy. One needs

to remember that at the previous IWWM8 (in London, 2014)

only 5 YIAs in total were presented. Shall we try for 15 or

20 at IWWM10 in 2018? The names of these deserving

individuals, as well as short summaries of their work, are

posted on the IWMF website at iwmf.com/research/research-

strategy

The ﬁnal day (Saturday, October 11) of the IWWM9

conference addressed clinical management of WM. In Session

11, newer and emerging therapies for WM were discussed:

BCL2 inhibitors, checkpoint inhibitors (a novel class of

immunotherapy agents that inhibit the suppression of the

normal antitumor immune response by the tumor itself), newer

monoclonal antibodies that target the plasma cell component

of the WM tumor. The session concluded with a tremendously

exciting (for me at any rate) presentation by Dr. David Maloney

from the Fred Hutchinson Cancer Research Center on the

emerging adoptive immune therapy ﬁeld using bio-engineered

CAR T-cells (that is, using the body’s own immune system,

with a few modiﬁcations) to kill the WM cells.

As is customary at these events, two Great Debates were

held (Session 12) where difﬁcult questions were argued by

leading WM clinicians and researchers. These debates hold

great interest for the WM patient community because they

often signiﬁcantly inﬂuence the therapeutic strategies used by

clinicians in the treatment of WM.

The topic of the ﬁrst debate: “What should be the frontline

standard for treatment of WM?” Five expert clinicians

presented their cases. Dr. Christian Buske from Germany

(who is, incidentally, a 2015 IWMF-LLS Strategic Research

Roadmap grantee) prefaced the discussion with a rather

sobering state of the union address with respect to the

difﬁculties encountered by WM clinicians and health care

policy directors when discussing which treatments are, and

should be, available to WM patients.

Clearly, each separate country dictates availability of

treatments based on economic realities or economic

priorities. The UK, for example, has a poor record of

making new treatments available (as has Canada, sadly).

Health economists often refer to dogma when justifying

their decisions to restrict treatment choices. In WM these

include: few randomized Phase III trials, no well-established

treatment standards, and variable adherence by individual

countries to follow existing recommended guidelines (such

as the National Comprehensive Cancer Network [NCCN]

guidelines). Obviously, the rarity of WM compared to other,

more common cancers has a tremendous impact on these

decisions as well. We simply have to eliminate WM (i.e. cure

it) to resolve that issue or ﬁnd some way to inﬂuence and

educate the health care policy “deciders.”

In any event, the following topics were debated: the

demonstrated efﬁcacy of bendamustine and combination

therapies with bendamustine and perhaps the need for fewer

cycles – four as opposed to the standard six (Dr. Mathias

Rummel, Germany); the cheap and effective CDR therapy

– Cytoxan, dexamethasone, and rituximab (Dr. Evangelos

Terpos, Greece); the tried-and-true use of nucleoside analog

combinations that have proven effective in WM and, in

4 IWMF TORCH Volume 18.1

Report from the Ninth, cont. from page 3

particular, their use in the treatment of Bing-Neel syndrome

despite the risk of transformation (Dr. Véronique Leblond,

France); the fading popularity of bortezomib in spite of newer

oral agents of the same class that have less neurotoxicity

(Jorge Castillo, USA); the rise of ibrutinib to become the

new standard for frontline treatment of WM (Meletios

Dimopoulos, Greece). No clear winner was declared, and

once again the availability of some of these relatively newer

agents, given economic realities, was invoked.

The second debate was perhaps a little more contentious,

certainly from the perspective of WM patients who were in

attendance. The question “What should be the goal of therapy

in 2017 for WM patients?” was discussed. Moderator Dr. Eva

Kimby (Sweden) opened the debate by asking why complete

responses are so uncommon in WM. Dr. Alessandra Tedeschi

(Italy) took the aggressive position that, with recent research

supporting new modes of attack, complete response is a goal

that can be achieved. In response, Dr. Efstathis Kastritis

(Greece) argued that, with the development of new types of

treatment in recent years, disease control should continue in

2017 to be the goal of therapy for WM. Clearly we want a

cure, but in reality we may have to settle with disease control

for now. This did not sit well with the patients, as we are all

anxious to rid ourselves of WM for good. Truthfully, however,

the treatments currently available at this time unfortunately

do not offer frequent complete responses, and WM patients

may have to patiently await results from continued research

and clinical trials.

The scientiﬁc conference continued with two sessions related

to the management of speciﬁc disease complications in WM.

Session 13 addressed peripheral neuropathy (Dr. Shirley

D’Sa, UK); Bing-Neel syndrome or brain involvement in WM

(Dr. Monique Minnema, the Netherlands); kidney failure,

which is rare but present in some cases (Dr. Josephine Vos,

the Netherlands). Session 14 covered amyloidosis in WM

(Dr. Ashutosh Wechalekar, UK, and Dr. Giampaolo Merlini,

Italy); hyperviscosity, and cryoglobulinemia (Dr. Marvin

Stone, USA). Rapid and effective control (and possible

eradication) of the disease appear to underlie the current

treatment strategies.

The conference ended with Session 15 on the role of

autologous transplants in the treatment of WM. Presenters

seemed to be polar opposites on this issue: Dr. Charalampia

Kyriakou from the UK, a leading expert in autologous

transplants in WM, argued that transplants are effective

and grossly underutilized in the treatment of relapsed WM

patients, whereas Dr. Jean-Paul Fermand from France was

quite opposed to the use of autologous transplants in WM,

given newer options for patients.

My overall perspective of this spectacular and informative

scientiﬁc Workshop (each successive one is better and better

and more encouraging for this WM patient) is that controversy

still exists with respect to what is the best treatment strategy for

WM. This is not surprising, given the fact that there exists so

much heterogeneity among individual WM patients and that

the best treatment for one may not be applicable to another.

Nonetheless, it is clear that we are making increasingly

important discoveries in the pathogenesis of this disease, and

this progress impacts positively on future treatments available

for WM and greatly increases the likelihood of increased

survivability and less toxic treatments.

As I reﬂect on this Ninth International Workshop on WM

(IWWM9), my impression can be summed up in three

observations: we are seeing increasing interest in WM from

researchers and clinicians who were not previously involved

with WM (WM now seems the be a “sexy beast” in the minds

of the hematology research community); we are now entering

the era of individual genetic testing to better determine

individual targeted therapy (we are all similar yet different);

and the advent of immunotherapy, such as CAR T-cell therapy

and directed speciﬁc immune checkpoint inhibitors, promises

that we are nearer than ever to a cure or, at the very least,

long-lasting remissions.

There is more work to do, more research needs to be funded,

more patients need to participate in clinical trials, and we

as WM patients can feel encouraged by all the efforts of

researchers and clinicians around the world. Many thanks

again to the conference chairs and speciﬁcally to the

Workshop Secretariat Christopher Patterson and his team

from Dana-Farber.

The end is near (not the zombie apocalypse), and we will see

exciting new positive developments in our journey with WM.

Researchers need our focused encouragement in terms of

research funding, and we as WM patients and our loved ones

need to continue to support each other as we have in the past.

In the interim we must also “live, laugh, and love often.”

Donate and Participate!

The next International Workshop on Waldenström’s

Macroglobulinemia will be held in New York City in

October 2018.

Complete information on IWWM9, including the Abstracts of

all sessions, can be found at: wmworkshop.org

* * *

You may detect a “theme” throughout this Torch issue, which

takes its cue from the article “Three Cheers for Volunteers!”

by Michael Sesnowitz on page 7. One particular volunteer

I am honored to write about is Dr. Guy Sherwood, whose

report on IWWM9 is the lead article for this issue. If you are

a frequent reader of the Torch, you are by now familiar with

Guy’s inimitable writing style and his way of “translating”

difﬁcult medical subjects so that they are easier and more

interesting to read. He is also a regular speaker at IWMF Ed

Forums, where his engaging personality and sense of humor

show through in his presentations. Guy has volunteered

for the IWMF in many other capacities through the years,

notably serving for several terms on the Board of Trustees and

writing publications for patients. Now he also serves as Vice

Report from the Ninth, cont. on page 5

5IWMF TORCH Volume 18.1

Report from the Ninth, cont. from page 4

As part of its commitment to furthering the advance

of research speciﬁc to WM, the IWMF has been

instrumental in the support of the biennial global

conferences known as the International Workshops on

Waldenstrom’s Macroglobulinemia (IWWM), which

provide WM researchers and clinicians an opportunity

to share their research ﬁndings and collaborate on

methodologies.

To promote innovative research, the International

Workshops sponsor an award program for young

medical specialists, researchers, and postdoctoral

fellows specializing in the area of WM. The Young

Investigator Awards (YIAs) are intended to develop

knowledge and skills in WM, thereby stimulating

research applicable to the development of medical

innovations that save and sustain patients’ lives.

The IWMF and several of its international afﬁliates have since

2014 contributed to the program by funding up-and-coming

research investigators to attend the International Workshops

on Waldenstrom’s Macroglobulinemia.

The IWMF is grateful to the following named US donors,

whose generosity helped us sponsor Young Investigator

Awards for each of the talented researchers listed below.

Researcher: Constance Baer, MLL Munich Leukemia

Laboratory, Munich, Germany.

Sponsors: Lenny Martin and Carrie Wells.

Researcher: George Chen, Bing Center for Waldenström’s

Macroglobulinemia, Dana-Farber Cancer Institute, Boston,

MA, USA.

Sponsors: Joseph and Yvonne LoRe, in memory of Frank

J. LoRe.

Researcher: Eric Durot, Department of Hematology, Centre

Hospitalier Universitaire de Reims, France.

Sponsors: Mr. and Mrs. Ronald Branscome, Mr. Don Handal.

Researcher: Simone Ferrero, Department of Molecular

Biotechnologies and Health Sciences, Division of

Hematology, University of Torino, Torino, Italy.

Sponsor: Anonymous.

IWMF MEMBERS SPONSOR NINE

YOUNG INVESTIGATOR AWARDS

Researcher: Josh Gustine, Bing Center for Waldenström’s

Macroglobulinemia, Dana-Farber Cancer Institute, Boston,

MA, USA.

Sponsor: Anonymous.

Researcher: Shahrzad Jalali, Mayo Clinic, Rochester,

MN, USA.

Sponsor: Roy Langhans.

Researcher: Aneel Paulus, Mayo Clinic, Jacksonville, FL, USA.

Sponsor: Ken Wierda.

Researcher: Nickolas Tsakmaklis, Bing Center for

Waldenström’s Macroglobulinemia, Dana-Farber Cancer

Institute, Boston, MA, USA.

Sponsors: Mr. Gordon VanderBrug and Mrs. Catherine

VanderBrug.

Researcher: Josephine M. Vos, MD, St. Antonius Hospital, NL.

Sponsors: Catherine Brotzman, Michael and Carol Sesnowitz.

Congratulations to the awardees and many thanks to these

generous donors for helping support and inspire the next

generation of WM researchers!

Young Investigator Awardees at IWWM9 proudly display their plaques

commemorating the honor conferred on them in Amsterdam. The IWMF

funded the awards for nine of these promising young researchers. At the far

right: IWMF President Carl Harrington, Dr. Steven Treon, and Dr. Enrica Morra.

President for Research. I remember back to my early days

on IWMF-Talk, when I was reading about Guy, a physician

diagnosed at a young age and with a young family, and the

story of his travails before, during, and after his autologous

stem cell transplant. At that time, I didn’t imagine that I

would have the opportunity to get to know Guy well, but I

have been fortunate. I can attest to the fact that he is just as

engaging and funny in person, as well as compassionate and

caring. He works for the IWMF while he maintains a busy in-

hospital practice and teaches medicine to aspiring physicians

in Winnipeg, Canada. So, three cheers for a “Guy” who is a

volunteer extraordinaire!

Sue Herms, IWMF Trustee, Research Committee Member,

Torch Associate Editor

6 IWMF TORCH Volume 18.1

PRESIDENT’S CORNER

Welcome to 2017!

When I was in Amsterdam in

October to attend IWWM9

(the International Workshop

on WM), someone said

“When I was still employed,

I was a project manager:

ﬁguring out the timing, the

resources and the best way

to get things done. Now

that I have WM, I’m a

project manager again, but

I’m focused on managing

my WM.” As someone

whose whole marketing career involved managing multiple

products, those words rang true to me. So, how do you plan

to manage your WM this year?

Let’s take a look back at 2016 and see what the IWMF did

to provide you with resources to manage your WM, and then

let’s look at what 2017 might bring. Of course, everything

the IWMF does reﬂects our simple but compelling vision: “To

support everyone affected by WM while we advance the search

for a cure.” Remember, with the IWMF you are never alone!

Key highlights of 2016:

1. We made great progress on the IWMF-LLS

Strategic Research Roadmap:

a. In February, we received 18 high quality research

proposals from around the world.

b. In May, we held the second Strategic Research

Roadmap Summit, in New York City, and

reafﬁrmed the four key areas of research focus:

Bone Marrow/Tumor Microenvironment;

Immunotherapy; Cell Signaling and Genomics/

Epigenetics.

c. In August, we provided $1.7M funding for three

key Roadmap projects and a fourth project

outside the Roadmap, bringing our total research

spending since 1999 to over $10M.

d. In November, we issued a new RFP (Request for

Proposals) to about 250 prominent researchers,

asking for new proposals that we would consider

for funding in 2017. The number we are able to

fund will depend upon donations.

e. In December, we issued a new RFP for a speciﬁc

project related to WM and amyloidosis. While

not strictly part of the Research Roadmap, this

project was made possible by a targeted iwmf.

com donation from a generous WMer.

2. We helped fund the Ninth International WM

Workshop (IWWM9); over 250 physicians and

researchers met, for 3 days, to share and collaborate

about future needs and plans. As part of this work,

and through the generosity of nine donors, we

funded nine recipients of the Young Investigators

Awards (YIAs) to attend IWWM9. These are the

young researchers that we hope, over time, will

provide continuing leadership in our efforts to ﬁnd

a cure for WM.

3. We enhanced member support by:

a. Naming eight new Support Group Leaders in the

US and establishing a new IWMF afﬁliate (WM-

Scandinavia) to provide support to patients

in Denmark, Sweden and Norway. The new

leaders are providing personal support when and

where needed.

b. Expanding LIFELINE capability via more

contacts and more topics. If you are too far

from a support group or the next meeting is not

soon enough, just pick up the phone and you can

speak to someone who’s been in your situation.

c. Holding or supporting very successful

educational forums around the globe. Overall,

more than 800 WMers personally attended

education forums in the US, Canada, France,

the UK, Belgium, Germany, Italy, and the

Netherlands.

d. Adding two new partners: Lab Tests Online and

Triage Cancer. See what they offer at iwmf.com

e. Creating ﬁve new, downloadable pamphlets

about treatment options that, via a grant from

one of our pharmaceutical partners, have

been translated into French, Spanish, Italian,

traditional Chinese, simpliﬁed Chinese and, for

the ﬁrst time, German. These pamphlets will

guide you, and your oncologist, in choosing the

best treatment for you. Go to iwmf.com/media-

library/download-iwmf-publications to review

these new publications.

4. Breaking our 2015 donations record with an

incredible 2016 total.

What can you expect, in 2017, from the IWMF Board of

Trustees and the IWMF Ofﬁce that can help you manage

your WM?

1. The 2017 IWMF Educational Forum will be in

Phoenix, AZ, May 19-21. The theme will be

Imagine a Cure: Mapping Our Future. See page

19 for more details and registration information.

There’s no better way to build your knowledge

about WM while making life-long friends.

President's Corner, cont. on page 7

7IWMF TORCH Volume 18.1

Three Cheers for Volunteers, cont. on page 8

2. Our US support groups and afﬁliates will continue

a steady stream of meetings and educational events.

Look for these on our events calendar at iwmf.com

3. We will announce a new round of Roadmap research

projects in August 2017. The number of projects we

support will depend upon the donations you make

and the quality of the proposals we receive.

4. The third Strategic Research Roadmap Summit will

be in October, in New York City. This Summit will

ensure we remain on the best track to ﬁnding a cure.

5. We will be updating IWMF-Talk, making it easier

to use. From early in 2017 it will be called IWMF-

Connect. Use it to tap into the collective wisdom

and experience of WMers worldwide.

We will update our free publications Medical Tests

and Living with WM. These updates ensure you have

the latest tools to help you manage your WM.

I wish you the best as you manage your WM in 2017. Rest

assured that we are hard at work providing you with the tools

we think will help you. And remember, with the IWMF you

are never alone. Call upon us and your fellow WMers for the

support you need.

Stay well!

Carl

President's Corner, cont. from page 6

A few months ago participants on IWMF-Talk discussed

the best charities to support ﬁnancially. The focus of the

discussion was on CEO and other executive salaries and the

portion of dollars donated that actually go to program support.

There are many ways that charities can be evaluated. One

way is to see if the charity is meeting its mission. Another

is to see if the charity is operating efﬁciently, using the lion’s

share of its budget to fund its programs. The IWMF believes

that these two metrics should both be used. That is, it’s not

sufﬁcient to be efﬁcient if you’re not meeting your mission,

and it’s not sufﬁcient to meet your mission if you’re not doing

so efﬁciently.

The mission of the IWMF is:

• To offer mutual support and encouragement to the

Waldenstrom’s macroglobulinemia community and

others with an interest in the disease.

• To provide information and educational programs

that address patients’ concerns.

• To promote and support research leading to better

treatments and, ultimately, a cure.

We meet the ﬁrst two parts of our mission by providing an

online forum (IWMF-Talk) through which we can support

each other in real time; by providing the LIFELINE as a means

for patients to learn and receive support from other patients

who have experienced treatments being contemplated; by

providing contact information for WM medical specialists

throughout the world who have agreed to provide consultations

to patients and their physicians; by providing Support Groups

throughout the United States as well as in other countries;

by creating and maintaining an informative website; by

THREE CHEERS FOR VOLUNTEERS!

REFLECTIONS ON THE STATE OF THE FOUNDATION

by Michael Sesnowitz, Vice President for Fundraising

publishing the Torch which summarizes recent research and

treatment options and connects readers with the organization

and with each other; by publishing booklets and fact sheets

that help explain the mysteries of WM and the treatments

available; by providing highly informative Info Packs to the

newly diagnosed; and by holding the Educational Forum each

year in the United States where attendees can learn from the

world’s leading WM experts about the most recent research

and most effective treatments and can network with one

another. We provide these services at no charge and rely on

donations to cover our costs. The sole exception is the Ed

Forum for which we charge a modest fee that helps defray the

cost of meals.

We meet the third part of our mission by providing funding

for the most promising research projects in the world that

address WM. We accomplish this with the help of our

Scientiﬁc Advisory Committee (SAC) made up of the world’s

leading researchers. Last year we awarded an additional

$1.2M of grants to researchers who responded to the Strategic

Research Roadmap’s “Request for Proposals” with the most

innovative and promising proposals. We also committed

another $500,000 to the continuation of very promising work

by Dr. Treon’s team at the Dana-Farber Cancer Institute.

Since 1999, the more than $10,000,000 in research we

have sponsored has led to publications in some of the most

prestigious medical journals in the world, including the New

England Journal of Medicine. This research has resulted in

a better understanding of our disease and has led to better

treatments. It has brought us closer to a cure.

8 IWMF TORCH Volume 18.1

Three Cheers for Volunteers, cont. from page 7

We believe our members support us because they believe

that we are accomplishing our mission. But are we doing it

efﬁciently? We believe we are.

Last year the Sarasota Community Foundation conducted a

compensation-and-beneﬁt survey of non-proﬁt organizations

in the greater Sarasota area. The results were reported by

organization size. With an annual budget of $1.7M, we fall

in the middle of the $1M-$2.5M group. Nonproﬁts in this

group reported having a full-time staff of 15 and a part-time

staff of 9. Assuming that part-time workers work half time, a

full-time staff of 15 and a part-time staff of 9 are equivalent

to a full-time staff of 19.5. By contrast, the IWMF has a

full-time staff of 2 and a part-time staff of 4, so our full-time

equivalent staff is 4, only one-ﬁfth the size of the average

nonproﬁt organization in our category.

How do we manage to meet our mission with such a small

staff? Volunteers! We are able to do all we do with a very

small staff because we rely heavily on volunteers.

Who are these volunteers and just what do they do? Let’s start

with our President, Carl Harrington. Leading the IWMF is a

full-time job, and Carl works long hours on our behalf with

no pay. It would take too much space to enumerate everything

he does. Sufﬁce it to say that he oversees all operations of

the IWMF, establishes and maintains relationships with

pharmaceutical companies and other nonproﬁt organizations

like LLS and LRF, and provides the leadership that enables us

to continue to meet our mission.

Unlike most non-proﬁt boards, the IWMF Board of Trustees

is not just a group that sets policy, it’s a group that implements

the policies it sets. And this hardworking volunteer board

is supplemented by a large number of other volunteers who

do everything from creating and publishing the Torch to

soliciting and reviewing research proposals.

Every article in the Torch is written by a volunteer, including

the popular Doctor on Call column. The Torch is edited

by Alice Riginos, who spends countless hours lending her

considerable editorial skills to the IWMF. The booklets and

other IWMF publications are all written by highly skilled

volunteers. All those who staff the LIFELINE are volunteers.

All Support Group Leaders are volunteers. All those who

plan and implement the annual Ed Forum are volunteers,

as are all the speakers who enlighten us. The website was

created, and is maintained, by volunteers. IWMF-Talk is

maintained by Peter DeNardis, volunteer and Board member.

Dr. Stephen Ansell of the Mayo Clinic chairs the Scientiﬁc

Advisory Committee composed of 18 of the world’s most

prominent WM specialists. They are all volunteers who help

us set research policy and review the proposals and reports we

receive. Every member of the IWMF Research Committee

is also a volunteer.

Our small staff in Sarasota supports all these volunteers. We

could not function without our wonderful staff, but it is the

volunteers that enable us to keep their size so small.

Last year Carl Harrington surveyed our volunteers and

estimated that they spent roughly 23,000 hours working for

the IWMF. Assuming that 2,000 hours represents a full work

year (40 hours per week, 50 weeks per year), those volunteer

hours translate into 11.5 full-time equivalent employees. It is

these volunteers that allow us to operate effectively with just

4 full-time equivalent employees and allow us to use the vast

portion of donations programmatically.

In almost everything we do, we aim for class A. Class A

researchers to conduct WM research, a class A website and

publications to educate our members, a class A Ed Forum,

and so on. But there is one area in which we shun class A: real

estate. Class A in commercial real estate refers to buildings

that have high quality ﬁnishes, state of the art systems,

exceptional accessibility, and a market presence. The IWMF

maintains its headquarters in Sarasota, FL, where class A

commercial properties rent for as much as $60 per square

foot annually. If you visit the IWMF ofﬁces, you won’t ﬁnd

any mahogany, but you will ﬁnd modestly appointed ofﬁces

that rent for $7.40 per square foot annually and house a small

staff of dedicated professionals who strive daily to help us

accomplish our mission.

If you believe, as we do, that the IWMF is a good steward of

your money, accomplishing its mission efﬁciently, we hope

you will choose to support us as generously as you can.

As always, every dollar donated to the Research Fund will be

used to support an approved research project.

Michael Sesnowitz joined the IWMF Board of Trustees in

2012 as Chair of the Fundraising Committee. An economist

by training, Michael’s credentials in both academia and

government attest to an active and impressive career. Equally

noteworthy is the number of positions he has held in a

volunteer capacity. The IWMF is indeed fortunate to have

this career-long volunteer “on Board.” The Torch conveys to

Michael its best wishes upon his recent retirement from the

Virginia Commonwealth University.

Have Your Say

The Torch welcomes letters, articles, or suggestions for articles. If you have something you’d like to share with

your fellow WMers, please contact Torch editor Alice Riginos at [email protected]

9IWMF TORCH Volume 18.1

RESEARCH PARTNERS – For a commitment of $50,000 per

year over a minimum of two years, or a lump sum of $100,000

or more, you can become a Research Partner supporting a

speciﬁc IWMF research project approved by our Scientiﬁc

Advisory and Research Committees. Research Partners will

have an opportunity to be kept informed of the progress of

the research project and will be formally acknowledged by

the investigators in their report of the project as well as in

any resulting publications. We generally have 4 to 6 research

projects underway, with new projects under consideration

throughout the year.

Research Partners

David & Janet Bingham Research Partners Fund of the IWMF

Robert Douglas Hawkins Research Partners Fund of the IWMF

Michael & Rosalie Larsen Research Partners Fund of

the IWMF

Carolyn K. Morris Research Partners Fund of the IWMF

W. Thomas Myers Research Partners Fund of the IWMF

K. Edward Jacobi Research Partners Fund of the IWMF

NAMED GIFT FUNDS – For a commitment of $10,000 per

year for ﬁve years, or a lump sum of $50,000 or more, you

can establish a named fund at the IWMF in your own name

or in the name of someone you wish to honor. This fund may

support Member Services or Research or a combination of

the two.

MAJOR GIFTS TO THE IWMF

Named Gift Funds

Baker Family Research Fund of the IWMF

Dr. Morie A. Gertz Research Fund of the IWMF

Gary Green Research Fund of the IWMF

Caroline & Harry McPherson Research Fund of the IWMF

Lynn Martin & Carrie Wells Research Fund of the IWMF

Gail Murdough Member Services/Research Fund of the IWMF

Sesnowitz Family Research Fund of the IWMF

If you have discretionary giving power and would like to help

move our Research and Member Services programs forward

in a special way, we invite you to join those listed above. For

more information about Research Partners and Named Gift

Fund opportunities and possible gifting options that might

make that possible, please contact Dave Benson, IWMF

Senior Development Ofﬁcer at 952-837-9980 or dave@

dbenson.com

Reach Out to Others for Support

The IWMF Support Groups are the perfect place to

talk with and share experiences with other people

affected by WM, including patients, family members,

and caregivers. The groups provide mutual support

and education and offer the opportunity to discuss

concerns with others who share similar experiences.

Counting our International Afﬁliates, the IWMF

now has 56 support groups as follows:

• US – 34 Support Groups

• International – 22 Support Groups across

14 afﬁliates (Australia, Argentina, Belgium,

Canada, Finland, France, Germany, Ireland,

Italy, the Netherlands, Spain, Denmark/

Norway/Sweden, Taiwan, UK)

You can ﬁnd the locations of all IWMF-afﬁliated

Support Groups at:

iwmf.com/get-support/us-and-international-

support-groups

As of November 1, 2016

10 IWMF TORCH Volume 18.1

In Memoriam, cont. on page 11

When word comes that we have lost a member of our

Foundation, all share a sense of sorrow and loss, and this was

especially true when the word came that Karen Pindzola had

died peacefully at home on the morning of July 13. Many

members of the IWMF remember Karen for her volunteer

service, as well as her warm and welcoming manner.

An active member of the Board of Trustees from 2004 to 2008,

Karen compiled the ﬁrst version of the IWMF Support Group

Leaders’ handbook, which has proved to be invaluable to the

many leaders over the past decade. In her role of Support

Group Leader of the Philadelphia Support Group, a post she

shared with her husband, Dan Pindzola, for fourteen years,

Karen touched many lives through her tireless dedication,

her invaluable support, her strength and patience. Many

remembrances of Karen’s kindness and generosity circulated

on IWMF-Talk as the report of her death became known, and

many remembered her as an active participant offering sage

advice based on her years of experience.

It was important to Karen that her WM community know and

understand that she did not pass away from Waldenstrom’s,

but from sarcoma resulting from radiation used successfully

50 years ago to treat Karen for Hodgkin’s disease, another

form of lymphoma.

The words of President Carl Harrington, who was a

Philadelphia Support Group member during Karen’s time as

leader, sum up sentiments expressed by many: “Karen holds

a special place in my heart as she is the one who helped me

when I was ﬁrst diagnosed, welcomed me to the Philadelphia

Support Group, and ‘took care of me’ at my ﬁrst Ed Forum

in Atlanta in 2007. She will be greatly missed. I am glad

to have had a chance to see her and her husband, Dan, at the

May 15, 2016, Philadelphia Support Group meeting.”

Her survivors include her husband of ﬁfty-two years, Daniel

M. Pindzola, of York, PA; her son, J. Ander Pindzola and his

IN MEMORIAM: KAREN FOSSE PINDZOLA

1944 - 2016

wife, Kathy, also of York; her daughter, Lauren P. Courtney

and her husband, Andrew, of Falls Church, VA; as well as her

sister, Lynn Demos, of Greenbelt, MD; and her ﬁve beloved

grandchildren, Grace, Olivia, and Jude Pindzola, and Sasha

and Hanna Courtney.

A Memorial Service celebrating Karen’s life was held

on Saturday, September 17, at the Unitarian Universalist

Congregation of York. Members of the Philadelphia Support

Group were welcomed by Karen’s family and friends. At the

reception that followed, important aspects of Karen’s life were

recalled in a unique and personal way. The display of her

Girl Scout sash, decorated with an array of honor badges,

and other Scout memorabilia showed that the value of service

to others was rooted in her early years. Most impressive,

however, was the exhibit of Karen’s watercolor paintings. Her

family members recalled her pleasure while painting at Plein

Air festivals along the Eastern Shore. Those who had known

Support Group Leader Karen Pindzola

speaking to the Philadelphia Support Group.

On display at the memorial service for Karen, a photo of

Karen and Dan Pindzola with their children and grandchildren.

Snowscape by Karen.

11IWMF TORCH Volume 18.1

In Memoriam, cont. from page 10

At the reception following the memorial service,

items on display, including her Girl Scout awards,

evoked the youthful Karen Fosse Pindzola.

Paintings by Karen were on display as well. Members of her

Support Group who had known her for years were surprised to

learn that Karen was an accomplished artist.

Karen as their Support Group Leader were surprised by the

revelation that she was also an artist of considerable talent.

Long-time readers of the Torch will recall that, writing for

the column Support Group News, Karen would often note the

attendance of the Philadelphia Support Group’s mascot, “the

little white dog Heidi” who was always said to have enjoyed

the refreshments. Heidi certainly would have been pleased

with the “French Crackers,” an old-fashioned type of butter

cookie baked by Karen’s sister, Lynn, from an old family

recipe to serve at the reception. This was another personal

touch that made Karen’s service and reception so very special

for all who knew and loved her.

Michael Ray Jacobson was born in Pittsburgh, PA, in 1950.

After graduating as one of four valedictorians of Allderdice

High School, he attended Harvard College and Cornell

University for his undergraduate physics and doctoral

astronomy degrees, in 1971 and 1977, respectively. In 1973,

he married Dr. Simone Ellen Jacobs, a chemist. They moved to

Tucson, AZ, in 1975 and had three children there. Mike was on

the staff of the College of Optical Sciences from 1977 through

1991, when he and Simone founded a spectrophotometry test

laboratory, Optical Data Associates. Tragically, Simone died

in 1998, at 52, from chemotherapy. He married Shoshana, a

psychotherapist, in 2000, and added two grown stepdaughters

to his family. Mike continues to run the company on his own,

and has no plans to retire. He is active in his synagogue,

sings in the choir, goes regularly to the gym, solves difﬁcult

crossword puzzles, and loves working with his hands. Over

the years, he has written scores of parodies and poems, best

IN THE TORCHLIGHT

by Michael Ray Jacobson

described as enlightened doggerel. He is honored to have the

poem that follows, written for his 45th college reunion book,

published in the Torch.

Dr. Michael Ray Jacobson in his spectrophotometry test laboratory.

In the Torchlight, cont. on page 12

12 IWMF TORCH Volume 18.1

On My 45th College Reunion

As I complete solar loop forty-ﬁve

Since graduation, I here will contrive

A doggerel ditty on staying alive

As my life’s seventh decade I hope to survive.

I live in Tucson, where the sky is not drab

That’s where I run my spectroscopy lab

My clients send samples from ﬁeld or fab

I send them results and put fees on their tab.

The kids are in cities that all end in “o”

Tivon, wife, and son call their home Tokyo,

Shira inhabits the shore in Chicago,

Natan’s residing in north San Diego.

My ﬁrst wife, a chemist and math whiz, Simone,

In ninety-eight died, an event I bemoan

The chemo that killed her was accident prone

This left me and our children so strangely alone.

After three months of mourning, I no longer tarried

To mobilize Michael and get me remarried

The women I met then were many and varied

I soon found my Shoshi, the motion was carried!

We’ve been together now, seventeen years

She’s supported my strengths and supplanted my fears

Her own psychotherapy business career,

Has earned her respect from her clients and peers.

For my sixtieth birthday, I wrote a short ode

And set it to music, and at my abode

I sang at my party of how I plateaued

And the subtle decline that the future forebode.

13IWMF TORCH Volume 18.1

When I turned sixty-one, my chronic anemia

The family doctor found rather unseemly, a

Specialist recognized from academia

Waldenstrom’s macroglobulinemia!

This type of lymphoma strikes not in one’s prime

And often is indolent, failing to climb

But this may indeed be the very ﬁrst time

That this B-cell explosion has been set to rhyme!

I go to the gym, but the small strains and sprains

Are harder to heal, and hold on to my gains

As muscle tone weakens and memory wanes.

Apnea, tinnitus – the nuisances reign!

Then last June came viral encephalitis,

Along with its cousin, acute meningitis

Two weeks in the hospital, felt like detritus

My ﬁrst as an inpatient since tonsillitis.

Then I got out and I went back to work.

Those days I was down almost drove me berserk,

Getting back to my business ejected the murk!

My purpose and passion were powerful perks.

So I still have the energy, lambently glowing

Despite all the evidence that I am slowing

The lab and my family both keep me going,

Such blessings betoken a more subtle growing!

–

Michael Ray Jacobson

14 IWMF TORCH Volume 18.1

MEDICAL NEWS ROUNDUP

by Sue Herms, IWMF Trustee and Research Committee Member

NICE Reverses Decision and Agrees to Recommend

Ibrutinib Treatment for CLL in the United Kingdom

– There is hope that a recent development in the United

Kingdom may bode well for the future of ibrutinib treatment

of WM patients there. At press time, the United Kingdom’s

National Institute for Health and Care Excellence (NICE)

said that it could now recommend ibrutinib (Imbruvica)

treatment for relapsed chronic lymphocytic leukemia (CLL).

Previously, a NICE appraisal committee had recommended

against ibrutinib treatment in CLL because of its cost, but the

decision has been reversed following Johnson & Johnson’s

agreement to cut the drug’s price. A NICE appraisal

committee had also provisionally refused to approve ibrutinib

for the treatment of relapsed WM, but a ﬁnal recommendation

is anticipated shortly.

Canadian Oncology Drug Review Committee

Recommends Against Reimbursing Ibrutinib for WM –

The Expert Review Committee of the pan-Canadian Oncology

Drug Review (pCODR) issued its ﬁnal recommendation

to not reimburse ibrutinib (Imbruvica) for the treatment of

WM patients who have received at least one prior therapy.

The Committee made this recommendation because it

was unable to conclude, based on the available evidence,

that there is a net clinical beneﬁt of ibrutinib compared

with other appropriate treatment options, and that there is

considerable uncertainty with regard to outcomes such as

overall survival, progression-free survival, and quality of

life. The Committee acknowledged the drug’s ability to

control disease symptoms, its ease of administration, and its

improvements to quality of life. The Committee concluded

that, at the submitted price, ibrutinib is not cost-effective in

WM patients who have had at least one prior therapy and

that there is potential for a substantial budget impact with

ibrutinib. The submitted price of ibrutinib was $90.65 per

140 mg capsule; at the recommended dose of 420 mg/daily,

ibrutinib would cost $7,614.60 per 28-day therapy course vs.

an approximate weighted average of $2,493.15 for the mix of

standard therapies. The pCODR was established in Canada

by the provincial and territorial ministries of health (with

the exception of Quebec) to assess cancer drugs and make

recommendations to the provinces and territories to help

guide their drug reimbursement decisions.

Report Discusses Transformation in WM Patients – A

report appearing in the American Journal of Hematology

from the Bing Center at Dana-Farber Cancer Institute

discussed transformation to diffuse large B-cell lymphoma

(DLBCL) in patients with WM. Transformation means a

switch from a slow-growing indolent cancer with an indolent

clinical history to a more aggressive appearance under the

microscope and a more aggressive clinical course. The report

points out that transformation rarely occurs in WM – in this

study, 20 patients out of 1,466 experienced transformation.

The incidence of transformation is approximately 2% at 10

years and can occur in treatment-naïve as well as heavily

treated patients. Most patients presented with extranodal

(outside the lymph nodes) involvement, and the DLBCL

cells expressed BCL6 and BCL2 but not CD10. All patients

were treated with chemoimmunotherapy (a combination

of chemotherapy and immunotherapy drugs). The median

survival from transformation was 2.7 years, and the median

overall survival was shorter for transformed patients vs. those

who did not transform (estimated 9 vs. 16 years).

Bing Center Releases More Data on Atrial Fibrillation

Associated with Ibrutinib Use – Atrial ﬁbrillation (AFib) is a

known adverse event among patients with B-cell malignancies,

including WM, treated with ibrutinib. A letter to the editor of

the American Journal of Hematology from the Bing Center

at Dana-Farber Cancer Institute identiﬁed 12 of 112 WM/

LPL patients (10.7%) treated at its institution with ibrutinib

who were subsequently diagnosed with AFib; 50% of these

patients had a prior history of the condition. The cumulative

incidence of AFib at 1, 2, and 3 years was 5.4%, 7.1%, and

8.9%, respectively; the median time to the ﬁrst AFib event

on ibrutinib for all 12 patients was 14.2 months, and patients

with a prior history had a shorter time to AFib. Cardiological

intervention following the event included initiation of anti-

coagulation therapy with warfarin or rivaroxaban (Xarelto),

anti-arrhythmics, beta-blockers, cardioversion, calcium

channel blockers, and ablation with dual-chamber pacemaker

placement. Eleven of the 12 patients (92%) with an AFib

event continued on ibrutinib following intervention, although

5 (42%) patients had their ibrutinib dose reduced to 280 mg/

day following the event. The reason for ibrutinib-related

AFib remains under investigation, although inhibition of

cardiac PI3K-Akt signaling has been suggested.

Algorithm Proposed for Managing Ibrutinib-Related

Atrial Fibrillation – An article published by Cancer Network

in its online journal Oncology discussed a proposed algorithm

for physicians to use to assess the appropriate treatment for

patients who develop ibrutinib-related atrial ﬁbrillation.

The authors, from Huntsman Cancer Institute in Utah, also

recommend routine consultation with a cardiology specialist

to determine the most appropriate intervention to manage

stroke risk. The proposed algorithm can be used to guide drug

choices, minimize the potential for drug-drug interactions, and

involve and educate the patient in treatment planning. The

authors concluded that there must be a compelling reason to

initiate anti-coagulation therapy for ibrutinib-related AFib,

as to date there have been no reported cases of thrombotic

stroke due to this condition; they placed more emphasis on the

importance of rate/rhythm control and continuation of ibrutinib

Medical News Roundup, cont. on page 15

15IWMF TORCH Volume 18.1

Medical News Roundup, cont. on page 16

Medical News Roundup, cont. from page 14

therapy, and less on the need for anti-coagulation. They also

suggested that clinical trial validation using their model is

needed. Anyone wishing to obtain a copy of this article for his

or her physician may contact this column’s author via e-mail at

[email protected] or the IWMF Ofﬁce.

Retrospective Study Discusses Association of Kidney

Disease with WM – The incidence and prognostic impact of

nephropathy (kidney disease) related to WM has been largely

unknown. This retrospective study, published in the British

Journal of Hematology, assessed WM-related nephropathy

in a group of 1,391 WM patients seen at the Bing Center

at Dana-Farber Cancer Institute, in whom 44 cases were

identiﬁed. The cumulative incidence was estimated as 5.1%

at 15 years. There was a wide variation in kidney pathology,

including amyloidosis, monoclonal IgM deposition

disease/cryoglobulinemia, lymphoplasmacytic lymphoma

inﬁltration, light chain deposition disease, and light-chain

cast nephropathy, among others. The median overall survival

in patients with conﬁrmed WM-related nephropathy was 11.5

years, shorter than survival for those without nephropathy,

which was 16 years. Survival was better in patients with stable

or improved renal function after treatment. Based on these

ﬁndings, the report recommended that monitoring for kidney

complications should be considered in the surveillance of

WM patients.

Joint Study Looks at Secondary Malignancies in MGUS,

Multiple Myeloma, and WM – A joint study from the Bing

Center at Dana-Farber Cancer Institute and the Mayo Clinic

in Rochester evaluated the risk of secondary malignancies

in patients with MGUS, multiple myeloma (MM), and WM.

In recent years, the survival of these patients has improved

due to improvements in anti-cancer and supportive therapy;

however, the risk of secondary malignancies has increased,

thought to be due to a combination of environmental and

disease-related factors, as well as treatment. This review,

published in Leukemia & Lymphoma, concluded that current

data support an increased risk of myelodysplastic syndrome/

acute myeloid leukemia in patients with these conditions.

Although exposure to alkylating agents, nucleoside analogs,

immunomodulatory agents, and/or stem cell transplant might

increase the risk of secondary myeloid malignancies, there is

evidence that MGUS patients, who are typically not exposed

to these agents, also have an increased risk of these same

malignancies. The present data strongly suggest an inherent

increased propensity of developing myeloid malignancies,

which is present irrespective of therapy exposure. The risk of

other secondary hematologic malignancies or solid tumors is

less well established. In WM patients speciﬁcally, there seems

to be an increased risk for acute myeloid leukemia, diffuse

large B-cell lymphoma, thyroid cancer, and melanoma. The

biology behind such relationships remains elusive.

Bing Center Closes Phase II Trial of Idelalisib for

WM – The Bing Center at Dana-Farber Cancer Institute

reported its experience in Leukemia & Lymphoma on the

use of idelalisib in a Phase II trial of previously treated WM

patients. In preclinical studies, the MYD88 L265P mutation

also promoted activation of the PI3K pathway in WM cells,

and exposure to idelalisib, a PI3K inhibitor, induced robust

tumor cell killing. This clinical trial, activated in September

2015, had an original accrual goal of 30 patients; the actual

enrollment was 5 patients, who received idelalisib orally at

150 mg/twice daily. Four patients were evaluable for response

and exhibited stable disease on idelalisib; however, 4 of the

5 experienced Grade 3-4 (severe) increases in ALT, a liver

enzyme, indicating possible liver toxicity. In March 2016,

Gilead Sciences stopped 6 trials of idelalisib combination

therapies in patients with hematologic malignancies due to

an increased mortality rate associated with cytomegalovirus

reactivation and Pneumocystis pneumonia. Although these

infections were not seen in the Bing Center patients, its study

was also closed in March. The study authors concluded that

further development of idelalisib in WM would have to be

considered in the context of clinical trials in which different

dosage regimens could be evaluated in order to reduce the

possibility of liver toxicity.

ARGX-110 Development for WM Ended – Argenx

announced that it has ended its collaboration with the

Leukemia & Lymphoma Society to develop its lead oncology

drug ARGX-110 for the treatment of refractory WM. Under

their collaboration agreement signed in 2014, Argenx and

LLS had agreed to contribute a combined $4.5 million toward

a Phase II study of ARGX-110 in WM. ARGX-110 is a

monoclonal antibody that targets CD70. The company will

continue to develop the drug for T-cell leukemia and acute

myeloid leukemia.

Idera Suspends Trial of IMO-8400 for WM – In other

disappointing news, Idera Pharmaceuticals has decided to

suspend its Phase I/II trial of IMO-8400 for WM treatment.

The decision was made not for safety concerns but because

updated results suggested a limited clinical opportunity for

IMO-8400 as single agent therapy in WM. IMO-8400 is a

novel antagonist of the Toll-like receptors TLR7, 8, and 9.

Updated Clinical Trial Data Released for BGB-3111 in

WM – BeiGene, Ltd. presented updated clinical data from an

ongoing Phase I study of its oral BTK inhibitor BGB-3111

in WM patients at the 9th International Workshop on WM in

Amsterdam. The preliminary clinical data demonstrated that

BGB-3111 is well-tolerated and highly active in WM, with

an overall response rate of 92%, including a major response

rate of 83% and a very good partial response rate of 33%, at a

median follow-up time of 8 months. This dose escalation trial

was conducted in Australia, New Zealand, and the US, with

the ongoing study dosage established at 160 mg/twice daily.

Adverse effects were generally mild and self-limiting, with

the most frequent being upper respiratory infection, diarrhea,

petechiae/bruising, and nausea. One patient developed atrial

ﬁbrillation. More serious adverse effects included two cases

16 IWMF TORCH Volume 18.1

Medical News Roundup, cont. from page 15

of anemia and one case each of renal artery thrombosis,

bronchiectasis (permanent enlargement of and damage to

bronchial tubes), thrombocytopenia (low platelet count), high

blood pressure, cryptococcal meningitis, and neutropenia

(low neutrophil count). No serious hemorrhage was reported.

Analysis of patient response by genomic characteristics

is ongoing.

Exome Sequencing Reveals Recurrent Germ Line

Variants in Patients with Familial WM – Familial WM

cases and the clustering of B-cell proliferative disorders

among ﬁrst-degree relatives of WM patients have been

reported. Nevertheless, the possible mechanism of inherited

susceptibility to familial WM remains largely unknown. In a

study reported by Dana-Farber Cancer Institute, the Spedali

Civili di Brescia in Brescia, Italy, and the Harvard School of

Public Health, whole exome sequencing was performed on

germ line DNA (DNA passed through reproductive cells) that

was obtained from 4 members of a single family, 3 of whom

had WM. Additionally, 246 independent, unrelated WM

cases were screened as well as a control population without

WM. Speciﬁc germ line DNA variants in the LAPTM5 and

HCLS1 genes were the most recurring ones, present in all 3

affected members of the index family but not in the unaffected

family member, detected in 8% of the unrelated familial

cases, present in 0.5% of the nonfamilial cases, and found in

less than 0.05% of the control population. This report was

published in Blood.

Study Looks at Long-Term Outcomes of Allogeneic

Transplantation in Relapsed WM – A multicenter study

published in the journal Biology of Blood and Marrow

Transplantation looked at long-term outcomes of 144

relapsed WM/LPL patients who received allogeneic stem

cell transplantation. The data were obtained from the Center

for International Blood and Marrow Transplant Research

database from 2001-2013. Of this number, half received

myeloablative (high intensity) conditioning, and half

received nonmyeloablative (mini-allo or reduced intensity)

conditioning. The median age of patients was 53 years,

and the median time from diagnosis to transplantation was

41 months. Thirteen percent failed prior autologous stem

cell transplantation. In this study, progression free survival,

overall survival, rate of relapse, and non-relapse mortality at

5 years were 46%, 52%, 24%, and 30% respectively. Patients

with chemo-sensitive disease and better pre-transplant

disease status prior to transplantation experienced superior

overall survival, and there were no signiﬁcant differences

in progression-free survival based on the conditioning

regimen. The most common causes of death were primary

disease and graft-vs-host disease (GVHD). While allogeneic

transplantation yielded durable survival in select patients, the

study authors concluded that strategies to reduce mortality

from GVHD and post-transplant relapse are necessary to

improve this approach.

Information Presented on Seasonal Flu Vaccination for

CLL Patients on Ibrutinib – A letter appearing in JAMA

Oncology from the National Institutes of Health looked at

the efﬁcacy of seasonal inﬂuenza vaccination in patients with

chronic lymphocytic leukemia (CLL) treated with ibrutinib

(Imbruvica). Patients with CLL have impaired responses to

vaccines because of hypogammaglobulinemia (deﬁciency of

normal antibodies) and chemotherapy. Inﬂuenza vaccination

was offered to CLL patients enrolled in a Phase II trial of

ibrutinib. From October 1 to November 21, 2014, 19

patients received 1 dose of inactivated trivalent vaccine,

either Fluzone high-dose or standard dose. Antibody titers

were measured before and 3 months after vaccination. Up

to 74% of the patients achieved protective titers against

one or more of the inﬂuenza strains after vaccination,

thereby indicating that an antibody response to vaccination

is possible in patients receiving single-agent ibrutinib.

Consequently, routine immunization against inﬂuenza

should be considered in accordance with the Centers for

Disease Control and Prevention (CDC) recommendations for

immunocompromised patients.

Phase II Trial of CLR 131 in Multiple Myeloma and

B-Cell Lymphomas to Open – Cellectar Biosciences will

open a Phase II clinical trial of its investigational compound

CLR 131 in relapsed/refractory multiple myeloma and B-cell

lymphomas during the ﬁrst half of 2017. The trial identiﬁer

number is NCT02952508. CLR 131 uses a small-molecule

lipid (fat) compound that delivers radioisotope iodine-131

directly into tumor cells. Participants with lymphomas will

receive a single dose of the drug infused over a period of

30 minutes and will have the option of receiving a second

dose 80-160 days after the ﬁrst dose, depending on their

physicians’ assessments. The drug is currently being tested

in Phase I trials in patients with multiple myeloma, and the

US Food and Drug Administration has granted CLR 131

orphan drug status for multiple myeloma.

Phase III Trial Reports Obinutuzumab and Bendamustine

Combination Therapy in NHL – A multicenter Phase III

study looked at obinutuzumab (Gazyva) plus bendamustine

vs. bendamustine only in patients with indolent non-

Hodgkin’s lymphoma who were unable to achieve adequate

disease control with rituximab-based treatments. Gazyva

is a novel anti-CD20 antibody. This GADOLIN study,

reported in Lancet Oncology, enrolled 396 patients: 194

received obinutuzumab plus bendamustine and 202 received

bendamustine only. Those patients on the combination

therapy who did not progress received obinutuzumab

maintenance for up to 2 years. The primary endpoint was

progression-free survival. After a median follow-up of

21.9 months in the combination arm and 20.3 months in

the bendamustine only arm, progression-free survival was

signiﬁcantly longer in the combination arm. Grade 3-5

(moderate to severe) adverse events occurred in 68% of

Medical News Roundup, cont. on page 17

17IWMF TORCH Volume 18.1

Medical News Roundup, cont. from page 16

From a Daughter, cont. on page 18

patients in the combination arm and in 62% of patients in

the bendamustine only arm – these included neutropenia (low

neutrophil count), thrombocytopenia (low platelet count),

anemia, and infusion-related reactions.

TGR-1202 Being Evaluated in Several Clinical Trials for

CLL and Lymphoma – TG Therapeutics announced that

the US Food and Drug Administration granted orphan drug

designation for the company’s oral, next generation PI3K

delta inhibitor, TGR-1202, for the treatment of patients with

chronic lymphocytic leukemia (CLL). The drug is currently

being evaluated in a Phase III trial for patients with both

frontline and previously treated CLL. The company has

also begun a Phase I/II trial of TGR-1202 in combination

with the proteasome inhibitor carﬁlzomib (Kyprolis) in

patients with relapsed or refractory lymphoma. That trial is

enrolling patients at the Center for Lymphoid Malignancies

at Columbia Presbyterian Medical Center in New York, and

the trial identiﬁer number is NCT02867618.

Phase I Study Reports Safety of Marizomib in

Malignancies including Multiple Myeloma – A Phase

I clinical trial of marizomib (NPI-0052) in patients with

advanced malignancies, including multiple myeloma,

was published in Clinical Cancer Research. Marizomb is

a proteasome inhibitor in the same class as bortezomib

(Velcade). Marizomib was administered intravenously in 2

dosing schedules to 42 patients. The most common adverse

events were fatigue, nausea, diarrhea, and infusion site pain.

Marizomib did not appear to cause the severe peripheral

neuropathy or hematologic toxicity observed with several

other proteasome inhibitors.

The author gratefully acknowledges the efforts of Peter

DeNardis, Wanda Huskins, John Paasch, Colin Perrott,

Howard Prestwich, Charles Schafer, Ron Ternoway, and

others in disseminating news of interest to the IWMF-Talk

community. The author can be contacted at suenchas@

bellsouth.net for questions or additional information.

* * *

Medical News Roundup enters its second decade of

publication with this issue of the Torch! The 2006 fall issue

of the newsletter introduced Medical Research News, an

incisive review of the most recent medical news applicable to

blood cancers, especially to WM, edited by Sue Herms.

With a shift of title to the familiar Roundup, this column has

run in every issue since then. We all beneﬁt from the hard work

Sue does, not only collecting (now with the help of others)

scientiﬁc news but also presenting in clear and concise format

information that has special impact for us, for WMers. And

this is but one example of how Sue’s volunteerism extends

to all of us. Sue is Associate Editor of the Torch, and every

issue is improved by her collaboration. As Trustee of the

IWMF and serving as Chair of the Publications Committee,

Sue’s volunteer activities expanded to include writing such

educational materials as Treatment Options, editing the series

of IWMF booklets, and reviewing all correspondence sent out

in the name of the Foundation. For the Ed Forum Committee,

Sue currently plays a key role in planning the program, in

corresponding with the doctors, and in seeing to it that the

Forum runs as planned. She is a long-standing member of

the Research Committee. As the Roadmap initiative brings

increased work for the Committee, Sue is giving considerable

time and effort to assure the success of this venture that

serves us all. For the IWMF, Suzanne Herms is a volunteer

on a super scale! And, owing to her keen sense of humor, it is

also a delight to work alongside her.

Alice Riginos, Torch Editor

FROM A DAUGHTER WHO BECAME CAREGIVER

by Tiare Hoegerman

Tiare Hoegerman is the daughter of Jennifer Hoegerman

who, when diagnosed with WM, was a “younger WMer”

with an active career and young children at home. Jennifer

today is a WM survivor of 21 years and still very active. In

this open letter to family members (especially the junior

members) of WM patients, Tiare combines frank speech with

emotion and tenderness in telling how it was, and is, “to be a

child of Waldenstrom’s.”

To the Parents, the Sons, and the Daughters:

In the 20-odd years since my mom’s diagnosis, it feels as if

my family has been through every twist, turn, peak, and drop

on the rollercoaster ride that is cancer.

I was just 4 years old when my

grandpa, a doctor, ﬁrst discovered

something amiss in mom’s lab

work. The adult conversations

about IgM numbers, neuropathy,

and life expectancy that ensued

went right over my ﬂuffy blonde

head, unable to scare me like they

surely did my parents and big

brother. As I grew older, though,

the reality of her diagnosis slowly

set in. Now 25, I must admit that

I’m still in the process of accepting

Fulbright Scholar

Tiare Hoegerman in

Panama.

18 IWMF TORCH Volume 18.1

From a Daughter, cont. from page 17

the unpredictable, mysterious beast that is Waldenstrom’s. I

probably always will be.

Last year, when I agreed to the Torch’s invitation to share my

experience as a daughter and caregiver, I had no idea how

difﬁcult writing this would be. I’d anticipated blasting out a

letter in an hour or so and sending it off to the editors without

a second thought.

Not the case.

A page or two of words will never capture what it feels like

to grow up watching your mom trudge through cancer. What

sentence, no matter how artfully crafted, can fully encompass

the sick, sinking feeling in my stomach when her numbers

take a downturn and chemo talk comes up again? How can I

describe the fear that tightened around my throat each time I

saw her in an oncology room bed, never knowing how many

more close calls remain for us. Nor can words do justice to

the awe I feel in watching her scramble up hiking trails at 64,

when years ago the doctors said that her neuropathy should

have her wheelchair-bound by now.

I’ve done many things for Waldenstrom’s that I wish I’d never

have had to do, at least not by this age. I’ve cried myself to

sleep countless times for it, I’ve quit jobs and moved home

for it, I’ve learned to be a mother to my own mom for it. Hell,

I’ve even had to assist an enema for it. (Don’t ask.)

But as much as it stunted my spirit at times and shaved off my

childhood innocence perhaps a little too early, I can’t help but

give Waldenstrom’s its due credit.

There’s something about a life-threatening illness, be it

your own or that of someone you love, that makes life’s

little moments more meaningful, life’s surface stresses less

meaningful. It forces a deeper, more mindful perspective.

The words “I love you” carry more weight. Actions as simple

as to bring my mom a cup of tea are more purposeful. I don’t

know how many more opportunities I have to tell her how

much she means to me. I don’t know how many more cups

of tea I’ll get to enjoy with her.

This past December my best friend’s dad died of cancer.

Nothing in my life has been so heart-crushing, yet deeply

beautiful, as standing beside her as she went through the

process of hospice, his last weeks, and ﬁnally a memorial

gathering that none of us could believe was actually happening.

That winter, Kim’s life fell completely apart: she had lost her

dad – the rock in her family, her friend, her hero.

I watched in awe as Kim, instead of falling apart, took all

the love and loss of that difﬁcult season, wrapped the two

up together like yin and yang, and slowly began to restore

balance in her life. By the spring Kim had transformed

into the strongest, wisest, most grounded version of herself

that I’ve seen in the 13 years we’ve been friends. I am so

proud of her. Just thinking of everything that has happened

since December ﬁlls my heart with pride and my eyes with

tears. Kim learned in one big burst the courage and sense of

security that I’ve slowly been learning over the past 20-odd

years thanks to my mom’s Waldenstrom’s.

To the parent worrying about how your diagnosis will affect

the kids: I assure you that, although it won’t ever be easy, your

kids will be ﬁne, just like Kim and just like myself. There’s

no avoiding the fact that cancer just plain sucks. You can’t

shield them from that.

Once they get over that part, though, cancer may become the

cruelest but most valuable teacher. I know Waldenstrom’s has

been mine. It wakes me up to life’s inconsequential beauties,

like the way the blue in my mom’s eyes turns more alive and

piercing whenever she’s by the ocean. Or the way she danced

with my brother at his wedding in July, her neuropathic feet

kicking up dust and a giant smile on her face, without even a

thought of the wheelchair they’d predicted for her years ago.

If it were not for her cancer, would I give even half a blink to

such things?

To the daughters and sons growing up as caregivers: I hope

that, by the time you turn 25, you, too, will have learned more

than you ever thought you’d know by that age. I hope your

dance with cancer makes you strong and grounded like it has

made my friend Kim; I hope it makes you joyful and radiant

like it has made my mom. I hope, like me, you can one day

ﬁnd yourself grateful for the hard lessons that cancer has

forced on your family, lessons of life, loss, and love. And I

hope that you can appreciate every single cup of tea that you

get to share with someone.

After teaching English as a Second Language for 3 years

in California, New York, and Costa Rica, Tiare Hoegerman

is currently at the Universidad de Panama in the Fulbright

English Teaching Assistant Program.

Jennifer Hoegerman shared her life with Waldenstrom’s in the

Torch issue 15.4 (November 2014) pages 15-17.

Tiare with her parents, Jennifer and Robin Hoegerman.

19IWMF TORCH Volume 18.1

22nd Annual

IWMF Educational Forum

May 19-21, 2017

Phoenix, Arizona

Imagine a Cure: Mapping Our Future

Ever wonder what it would be like to visit Planet WM for one weekend? What if there was a place where everyone

spoke the same disease language, learned about symptom management, shared treatment experiences and lab

numbers, and knew what it felt like to carry this diagnosis? Look no further than Arizona in 2017! The IWMF

Ed Forum is THE place for one-stop shopping for every WM patient and caregiver around the world! Still not

convinced you should come? Maybe this will help….

TOP TEN REASONS TO BE THERE!

10. Engage with the world’s leading WM experts and superstars.

9. Connect with your old WM friends from across the globe.

8. Meet lots of new WM friends who understand your journey.

7. Attend the exciting Early Bird Session “The ABCs of WM” which is open to ALL, not just newbies.

6. Come see why IWMF President Carl Harrington is right when he states: “You are not alone!”

5. Enjoy the very popular “Ask the Doctor” panel discussion.

4. Mingle at the President’s Reception and enjoy the festive Welcome Dinner alongside IWMF Trustees and

world-class physicians.

3. Explore a plethora of dierent and diverse Breakout Sessions addressing multiple issues and hot topics.

2. Are you a Support Group Leader? Be sure to attend the informative half-day workshop on Thursday, May 18,

led by Marcia Klepac, IWMF Support Group Coordinator.

1. Do you really need a reason for a springtime escape to relax and recharge in amazing Arizona??? Seriously:

Come & Play! Register online at www.iwmf.com or ﬁll out and mail the registration form enclosed with this

Torch issue mailing.

Renaissance Phoenix Downtown Hotel

100 North 1st Street, Phoenix, Arizona 85004

www.marriott.com/hotels/travel/phxbd-renaissance-phoenix-downtown-hotel

602-333-0000 • Toll-Free 800-309-8138

See you in Phoenix!

YOU DON’T WANT TO MISS THIS ONE, FOLKS…

20 IWMF TORCH Volume 18.1

As we enter the winter season, post holidays, we hope for

spring. Looking back, there have been some signiﬁcant

events, including the International Workshop in WM held

in Amsterdam. This event always produces important

information, especially about new developments, see the

report by our Vice President for Research, Dr. Guy Sherwood,

on page 1. While discussion of the Amsterdam Workshop

did not come up as a topic on this forum, the discussions on

IWMF-Talk were extensive and had a wide range of topics.

Again, new members joined, and even long standing members

raised questions about diagnoses, treatments, and other related

topics.

HUMAN INTEREST/ARTICLES

As always, a multitude of interesting and helpful items were

posted regularly, and a full column could be done just using

these links. Here are some of the more interesting.

Wanda H posted a link to an article titled “Silver Tsunami

of Cancer Survivors.” This comes from the NIH-National

Cancer Institute and reports a study showing that the aging

of the US population will result in a substantial increase in

the number of older cancer survivors, particularly age 85 and

above. This is expected to place a strain on the ability of

the health care system to meet such a growing demand for

services.

http://www.cancer.gov/news-events/cancer-currents-

blog/2016/cancer-silver-tsunami

Wanda also posted a link to an article showing that humor

therapy is excellent medicine. Other articles about humor

have been posted in the past, but this article has a slightly

different perspective, offering some support for medical

aspects of humor, including “the science of laughing.”

http://movies.justchristiannews.com/index.php/2016/09/10/

humor-therapy-for-cancer-is-the-best-medicine

IWMF-Talk Manager and Trustee Peter DeNardis posted

a link from Cure magazine with the title “My Disease Doesn’t

Make Me a Hero. I Am a Hero.” This is an inspirational

article by a cancer patient who provides a perspective on

how to live through those tough moments of dealing with the

enormity of our WM disease and its impact on us.

http://www.curetoday.com/community/samira-rajabi/2016/08/

my-disease-doesnt-make-me-a-hero-i-am-a-hero

Wanda posted the link to an article written by a physician

about the inﬂuenza vaccine. The article was posted as part

of a larger discussion about inﬂuenza and other vaccines, a

discussion that occurs frequently during ﬂu season. More on

vaccines below.

http://sunriserounds.com/ok-so-i-just-dont-get-it-the-ﬂu-

that-is

FROM IWMF-TALK

by Jacob Weintraub, MD

Finally, IWMF-Talk editor Dr. Jacob Weintraub added the

link to an article in Cure magazine called “Two Things to Say

to Someone with Cancer.” This is a topic relevant to all of us

with cancer and provides helpful thoughts about connecting

with friends or relatives with cancer.

http://www.curetoday.com/community/martha-

carlson/2016/09/the-only-two-things-you-need-to-say-to-

someone-with-cancer?p=2

FLU SHOT

Also known as an injection against seasonal inﬂuenza, this

topic is discussed every year. Although this issue of the Torch

is published well into winter and the ﬂu season, the discussion

is still relevant for the remainder of the season this year and

for the next season as well.

In quoting verbatim the words from the participants in the

following lively discussion, Dr. Weintraub is quite correct

to quote with accuracy. The words quoted, however, lead to

mild confusion when we survey the terminology used in the

various posts to designate two different types of injectable ﬂu

vaccine. We hear of ‘senior’ (or ‘high dose,’ ‘extra strength,’

‘strongest one,’ ‘over 65’) versus ‘standard’ (or ‘regular,’ or

‘killed virus’).

The website of the Centers for Disease Control and Protection

cdc.gov gives us the following terminology: The standard

dose ﬂu shot and The high-dose shot (for older people).

But there’s more! For the ﬁrst time, and only recently

licensed by the FDA, in the 2016-2017 ﬂu season there is

another vaccine against seasonal inﬂuenza that is designed

to “create a stronger immune response to vaccination.” The

stronger response is achieved by the addition of an ingredient

called adjuvant. Visit cdc.gov to learn more!

Torch Editor

Tom C asked if anyone knows whether WM patients who

have completed chemo should get the “senior” (high dose)

dose annual ﬂu shot or just the regular one.

Anita L reported that her oncologist advised against the

“senior dose.”

Penny J posted that she has had the “extra strength” ﬂu shot

every year since it was offered, with no problem. She noticed

that her grandchildren were advised against the “ﬂu mist”

nasal immunization. However, this is a live vaccine, and it

is not recommended for WM patients, while the standard ﬂu

shot is a killed virus.

Laura E reported that she received the “senior” ﬂu shot,

(strongest one) a few weeks ago while being treated with

From IWMF-Talk, cont. on page 21

21IWMF TORCH Volume 18.1

From IWMF-Talk, cont. on page 22

From IWMF-Talk, cont. from page 20

Velcade. Laura did not have any problems or reactions. She

gets this shot every year.

Ken L reported that he, too, takes the “senior ﬂu” shot every

year. While Ken says it appears to be fairly effective in

preventing serious infections, he also reported that he had the

ﬂu at the time of posting and regularly gets ﬂus about twice

a year.

IWMF-Talk editor Jacob Weintraub, MD, advised Ken that

the “ﬂu” shot is speciﬁc for 3 or 4 strains of inﬂuenza only.

The vaccine is fairly good at preventing these very serious

infections. He also mentioned that there are many other

viruses that can cause “ﬂu like” illnesses. Parainﬂuenza and

adenoviruses are examples of viruses that can cause a ﬂu-like

illness with fever and cough. The inﬂuenza vaccine would

not prevent the ﬂu-like illnesses caused by parainﬂuenza and

adenoviruses.

Armand T added that, although he has no empirical proof, he

is convinced that the ﬂu shot led to his developing Guillain-

Barré syndrome. His oncologist conceded that the likelihood

is strong, as Guillain-Barré is, indeed, a rare outcome of the

inﬂuenza vaccine. So Armand no longer will receive the

ﬂu shot.

Faye L posted that she received the “over 65 shot,” both this

year and last year from the Mayo Clinic. This year is the ﬁrst

time she ever had a reaction – a low grade fever which went

away. Faye knows people who also ran a fever after receiving

this ﬂu shot but who are not cancer patients.

IMBRUVICA/IBRUTINIB

When I get ready to write this column for the each new

issue of the Torch, I say that I will not include discussion

of Imbruvica. However, the discussions continue daily

online. Some among us are trying to decide if this is the

best treatment, others are questioning the side effects that are

reported, others are reporting excellent results with minimal

adverse effects. Imbruvica’s effect on wound healing was

discussed this time around. Atrial ﬁbrillation also was a

frequently reported problem.

Jim D posted his story of atrial ﬁbrillation (AFib) over the

last 30 years, with no treatment at all for this. However, he

did have to take an anticoagulant (“blood thinner”) in order

to get into the ibrutinib clinical trial. He has had no change

in his AFib while taking Imbruvica. After 9 months in the

trial, his IgM has decreased from 7,300 to 3,600, and his bone

marrow inﬁltration is down from 80% to 30%. He reports

side effects of hip and back pain bothering him “a lot” and

also reports water retention and fatigue. Jim takes a diuretic

pill and potassium tablets. He feels fortunate that he never has

had palpitations or fainting, nor has he needed cardioversion.

Sharon T noted that AFib can cause strokes if not controlled.

She is taking such a high dose of antiarrhythmic meds because

of Imbruvica that she feels terrible. Her oncologist prefers to

have her continue to take the full dose of Imbruvica for now.

There also was some discussion about delayed wound

healing. Pavel I reported that he stepped onto something

sharp two months ago and suffered a small cut on his toe.

This wound apparently is not healing; if healing is occurring,

it is imperceptibly slow.

Paul L suggested that Pavel should give it another month.

Paul has been on Imbruvica and had a very similar problem

after podiatric surgery on his big toe. The toe ﬁnally healed

after about ten to eleven weeks. He had to bandage it every

day the whole time and had to apply antibiotic ointment to

prevent infection.

Pat G posted that she is not on Imbrivica but has ﬁnished a

course of bendamustine, and now is just using IVIg. She has

had cuts, scratches, and small burns that take 2 months or

longer to heal. Pat wonders if this is a WM issue and not just

an Imbruvica issue.

VELCADE/BORTEZOMIB

While new experiences with Imbruvica continue to be

reported, many members are also reporting on treatment with

some of the older treatments.

Carl G reported that he was to be starting Velcade, with

Rituxan to be added at the second cycle. Carl indicated that

his hemoglobin is very low and he is experiencing weakness.

He had been receiving red cell transfusions. Carl was hoping

to keep as active as possible and was asking about results and

side effects that others experienced from Velcade.

Zed F responded that he was diagnosed with retinal

hemorrhages and a very high IgM. He had one plasmapheresis

and then started BDR (bortezomib, dexamethasone,

Rituxan). He received bortezomib/Velcade subcutaneously.

Zed has been tolerating the treatment fairly well, although

HOW TO JOIN IWMF-TALK

Here are two ways to join:

1. Send a blank e-mail to: [email protected]

Make sure to enter the word “subscribe” as your subject, and do not sign or put anything in the message area (make

sure you do not have any signature information in there). Also, do not put a “period” after “edu” or it will reject. Once

approved you can post by sending e-mail to [email protected]

2. Contact Peter DeNardis at [email protected] and provide your full name

22 IWMF TORCH Volume 18.1

From IWMF-Talk, cont. from page 21

he reported mild constipation and some sleeplessness due to

the dexamethasone. He has had no peripheral neuropathy

(PN), which is often reported by people who have received

Velcade. Zed has made a daily practice of walking for about

45 minutes after dinner, even when he is tired following the

Velcade infusion. His IgM has decreased from 6000 at the

start to below 4000. Zed also takes the antiviral acyclovir to

prevent shingles.

Larry reported his experience with Velcade. When

Larry expressed concern to his oncologist about potential

neuropathy, he was offered a reduced schedule for the Velcade.

Larry agreed to this, but even with a reduced amount he did

develop some minor peripheral neuropathy in his forearms.

This lasted for two years and only now is ﬁnally dissipating.

Gerry W reported receiving 8 cycles of BDR in 2009 with

twice-weekly Velcade infusions. Although the treatment

was very successful, resulting in complete remission, Gerry

ended up with a very uncomfortable case of PN in the lower

extremities. The PN did eventually reverse somewhat, but

Gerry still has some lingering discomfort. Gerry added

that the reported rate of PN is 30% in patients treated

with Velcade, so that leaves a majority of 70% who do not

experience peripheral neuropathy.

Finally, Faye L stated that her treatment with Velcade was the

most successful treatment she had received. She began with

subcutaneous infusions twice a week, later adding Rituxan

and dexamethasone. The major problem she developed

was lowered neutrophils. At one point, her neutrophil level

dropped into the critical range. She was given Neupogen,

which did not help, and then was given Neulasta. The Velcade

was stopped after the third or fourth cycle. Her IgM decreased

from over 5000 to 1300, her current level. Faye would not

hesitate to take this treatment again if it was offered.

AGING

Finally, there were a few comments about treatment for the

more elderly members of our group.

Shirley S asked about treatments that are available and show

promise for people in their eighties and upwards. Speciﬁcally,

are there some treatments that are considered too harsh? She

has been treated with solo Rituxan, but it may not have been

successful and she likely will need more treatment.

Grete C offered her opinion that physiological age is more

important than chronological age. Other factors such as

nutritional support, social support, and the medications one

takes are important. The same treatments prescribed for

younger patients may be appropriate for older patients, but

with lower doses, fewer treatment days per cycle, and using

fewer drugs in combination than is the standard. Dr. Treon has

designated bendamustine and Rituxan (and also chlorambucil)

suitable for older patients in the following publication: http://

www.bloodjournal.org/content/126/6/721?sso-checked=true

Dr. Véronique Leblond addresses the question in another

article: nature.com/leu/journal/v27/n4/full/leu201336a.html

Once again, this column covers only a small sampling of the

topics and postings continuing daily. Everyone is invited to

join IWMF-Talk and participate. All comments and questions

are welcome. Many join just to “lurk and learn” and then ﬁnd

that they have something to contribute or a question to ask.

We are all here to help and we welcome your questions and

comments!

IWMF DIRECTORY of PHYSICIANS: UPDATE

The IWMF DIRECTORY OF WM PHYSICIANS lists by country and city the names and contact information of

oncologists and hematologists who are experienced in the treatment of Waldenstrom’s macroglobulinemia.

All doctors included in the Directory are available for consultation with both patients and other physicians

regarding the diagnosis, care, and treatment of WM.

Currently the Directory gives the names and contact information for 77 WM physicians within 13 countries.

China (Beijing and Shanghai) and the Netherlands (Amsterdam and Utrecht) are recent additions to the Directory,

and there are some newly added physicians in the European listings.

Whether you are newly-diagnosed or an established WM patient, when you need a second opinion or consultation

with a WM specialist be sure to check out the Directory of WM Physicians at:

http://www.iwmf.com/get-support/directory-wm-physicians

23IWMF TORCH Volume 18.1

On Sunday, October 9, the day following the conclusion of

IWWM9, the IWMF joined forces on this occasion with

Hematon, the Dutch blood cancer organization, in sponsoring

the Ninth International Doctor-Patient Forum. One hundred

and seventy-two attendees, coming from Western and

Eastern Europe, Central America, Australia, Canada, and

the United States, ﬁlled the Koepelkerk Conference Hall of

the Renaissance Hotel in Amsterdam to hear from world-

class authorities on Waldenstrom’s macroglobulinemia. The

speakers at the International Forum had, over the previous

days, presented reports on their own recent research at

IWWM9. The focus of the International Forum, however,

was to provide an audience of WM patients, caregivers,

and family members with current information regarding

this speciﬁc blood disease. The topics of the day included

diagnosis, treatment considerations, disorders related to

WM, understanding the genetics involved, and patient self-

care. The accompanying graphic images were projected in

the auditorium on two screens, one in Dutch and the other

in English.

THE NINTH INTERNATIONAL DOCTOR-PATIENT FORUM

Following a warm welcome by Moderator of the Proceedings

Dr. Marie José Kersten of the University of Amsterdam, there

were introductory remarks by Hans Scheurer, Board Member

of Hematon, IWMF President Carl Harrington, and Dr. Guy

Sherwood, IWMF Vice President for Research, who outlined

the goals and the progress of the Strategic Research Roadmap

initiative undertaken by the IWMF in collaboration with the

Leukemia & Lymphoma Society.

The Ninth International, cont. on page 24

24 IWMF TORCH Volume 18.1

The Ninth International, cont. from page 23

The program then rolled forward with:

Dr. Ramon Garcia-Sanz, University of Salamanca, Spain

(diagnostics and treatments); Dr. Robert Kyle, the Mayo

Clinic, US (predispositions to WM);

Dr. Zachary Hunter, Dana-Farber Cancer Institute, (genetics

and genomics of WM);

Dr. Monique Minnema, University Medical Center, Utrecht,

the Netherlands, and Dr. Josephine Vos, St. Antonius Hospital,

NL (disease co-morbidities).

The break for luncheon provided an opportunity to make

new acquaintances and to relax and appreciate the paintings

hanging in the Conference Hall (see photos).

Speakers and organizers of the Ninth International Patient-Doctor

Forum: From left to right: Guy Sherwood, MD, IWMF; Ramon Garcia-

Sanz, MD, Spain; Robert Kyle, MD, Mayo Clinic; Elena Malunis, IWMF;

Monique Minnema, MD, the Netherlands; Marie José Kersten, MD,

the Netherlands; Zachary Hunter, PhD, Dana-Farber Cancer Institute;

Toni Dubeau, Nurse Practitioner, Dana-Farber Cancer Institute; Hans

Scheurer, Hematon, the Netherlands; Jorge Castillo, MD, Dana-Farber

Cancer Institute; Carl Harrington, IWMF.

Photo courtesy of Roger Brown

The afternoon session featured:

Dr. Jorge Castillo, Dana-Farber Cancer Institute (treatment

decisions);

Dr. Marie José Kersten, University of Amsterdam, NL

(relapsed or refractory WM);

Toni Dubeau, RN/NP, Dana-Farber Cancer Institute (self-

management of WM).

A quick break next and then the send-off: Ask the Doctor

with Dr. Kyle at the podium and a lively panel of physicians

at the ready to respond. Dr. Castillo, Dr. Hunter, Dr. Kersten,

Dr. Minnema, and Dr. Vos participated.

The Ninth International, cont. on page 25

25IWMF TORCH Volume 18.1

The Ninth International, cont. from page 24

Attendees departed from the Koepelkerk Conference Hall with much to reﬂect upon following the very informative Ninth

International Doctor-Patient Forum.

The presentations from the Ninth International Doctor-Patient Forum are available in English on iwmf.com

26 IWMF TORCH Volume 18.1

International Scene, cont. on page 27

INTERNATIONAL SCENE

edited by Annette Aburdene

FRANCE

Waldenström France held its annual meeting in the enchanting

Musée des Arts Forains, Paris, on October 1. More than 80

patients, spouses, family members, and friends attended the

meeting. Two sessions took place, the ﬁrst led by Professor

Véronique Leblond, who spoke in a general way about the

disease Waldenström’s macroglobulinemia, the second by

Professor Jean-Paul Fermand on the more speciﬁc topic of

amyloidosis. The meeting was followed by two visits to the

museum. Everyone was truly amazed by the beauty and

charm of the rooms.

Nothing can be done in France without a good meal, and so

the day was completed with a dinner in a restaurant near the

museum.

Patrice Ostermann, Waldenström France, reporting.

The Musée des Arts Forains was certainly a unique venue for

a WM meeting. Have a look!

http://www.arts-forains.com/index_anglais.php.

GERMANY

The German Waldenström Support Group organized by

Leukaemiehilfe Rhein Main (LHRM) meets every two years,

this year holding its two-day Symposium on September 10

and 11 in Darmstadt, Germany. More than 60 patients and

caregivers from all over Germany and Switzerland – one

third were newcomers – had the chance to submit questions

ahead of the meeting. The presenters were Professor Kai

Uwe Chow of the outpatient cancer center Schaubstrasse in

Frankfurt and Professor Georg Hess of Gutenberg University

Hospital Mainz. Both physicians received praise from the

participants for their detailed presentations.

The presentations were recorded and can be viewed on the

LHRM website:

http://www.leukaemiehilfe-rhein-main.de

We regretfully report the death of Hans Erich Kiefer. Hans

Erich was for many years in charge of the WM Group within

LHRM. In his memory, a number of this year’s participants

agreed to volunteer more actively on behalf of the WM

Support Group.

Anita Waldmann, LHRM, reporting.

CANADA

On Friday November 11 we held our Fifth Bi-annual WM

Fundraiser at the Arta Gallery in the Distillery District of

downtown Toronto. The 94 guests enjoyed an evening of

music provided by Thin City, and we danced the night away.

Gourmet food stations and tasting platters kept our energy

up, and our guests took great interest in the silent auction,

the focus of the evening. With over 47 items up for auction,

including theatre tickets, hockey tickets, paintings, a Nepresso

coffee machine, I-Pads, beautiful quilts – and so much more

– the bidding was tense.

We were also presented with a cheque for $28,670 from

Rebecca Hinchcliffe, who held a fundraiser in support of WM

this past July. Along with a donation from Shelby Knowlton,

who also donated $3,800 from a fundraiser she did in honour

of her father, Michael Knowlton, we raised over $39,470 for

WM research.

We thank all those who came out to support us that evening and

especially those who then attended our WMFC Educational

Forum bright and early the next morning at The Royal

York Hotel.

Arlene Hinchcliffe, President, WMCF, reporting.

UNITED KINGDOM

Since the last Torch, things have become even busier. The

ﬁrst NICE (the UK health gatekeeper) funding meeting for

ibrutinib in relapsed WM resulted in provisional refusal,

accepting our WMUK evidence, plus that from Dr. Shirley

D’Sa and Dr. Roger Owen as experts, but still not funding

it. The meeting pack alone was 934 pages long! Our second

meeting in November was strengthened by some of the

results ﬂowing from IWWM9, and we hopefully await a more

positive result, as do the indications for CLL and Mantle Cell.

(Update as the Torch goes to press: NICE has given approval

to fund ibrutinib in relapsed CLL.)

Meanwhile, we fought a bitter battle with the National Health

Service (NHS) to restore stem cell transplantation, which

The Fifth Bi-annual WM Fundraiser held by WMFC attracted a lively

crowd of 94 participants (including Drs. Chen, Hunter, and Castillo who

were on the program for the following morning, see page 29) at the Arta

Gallery in the Distillery District of downtown Toronto. Bidding was lively,

and auction proceeds plus donations combined to total nearly $40,000.

27IWMF TORCH Volume 18.1

Roger’s birthday in Chingford. Participants in the Bake4Rory held at the BBC.

International Scene, cont. from page 26

ground to a halt in August due to a value for money

reassessment ﬁasco. Some 14 transplants are carried out

annually in the UK, mostly autologous with the patient’s

own cells. Not only was this a blow, but also patients being

prepared for their transplants faced cancellation of their

procedures. Sandra Redshaw and Harriet Scorer, with

WMUK support, had to bravely campaign in the press, on

TV, and in Parliament, where a petition rapidly attracted

12,000 signatures, meaning the government had to respond.

This resulted in their transplants going ahead, but the main

funding issue has still not been resolved at time of writing

and we continue to campaign.

In early September we had a delightful garden party meeting

at short notice in Chingford to coincide with my birthday,

with 26 patients and carers, lots of cake, and many glasses

of wine.

In October a large UK contingent went to IWWM9 in

Amsterdam, with some 14 UK doctors involved in delivering

papers or in the poster sessions, including one for the Rory

Morrison Registry, and on that Sunday 25 patients and carers

attended the International Doctor-Patient Forum generously

sponsored by the IWMF and Hematon. It was particularly

gratifying to see Dr. Roger Owen of Leeds receive the Jan

Waldenström Award at the closing ceremony of IWWM9 for

his services to WM, mainly through his extensive work in the

pathology of the disease.

In the New Year we should see some more UK clinical trials

with a multi-center BGB-3111 trial of this second generation

BTK inhibitor, whilst it seems that the results from the

acalabrutinib trial, ACP-196 (another BTK inhibitor) with

some 60 UK participants, indicate that Astra Zeneca is

looking at applying for regulatory approval in the USA in the

ﬁrst quarter of 2017.

There have been a number of notable fundraising events in

autumn, but the highest proﬁle was the fourth Bake4Rory,

held at the BBC by Rory Morrison’s colleagues. This event

raised £4,000 towards the WM Registry, some half of the

annual maintenance cost.

We are ﬁnalizing a late spring doctor-patient meeting at Oxford,

and details should be available on our website by the time

you read this. If you don’t already receive our e-newsletter,

subscribe on our website and join the WMUK community.

Roger Brown, WMUK, reporting.

AUSTRALIA

WMozzies WhiMSICAL CART-WHEEL Presentations

The WMozzies WhiMSICAL CART-WHEEL research study

has been presented three times since its June launch.

• Sydney Leukaemia Foundation WM patient support

meeting on October 19.

• Cancer Institute NSW Conference Innovation in

Cancer Treatment in Sydney on September 16.

• Amsterdam at the International Doctor-Patient

Forum on WM on October 9.

In Amsterdam at the International Doctor-Patient Forum,

IWMF President Carl Harrington hosted a special brieﬁng

on the WhiMSICAL study for international WM leaders

from the US, UK, the Netherlands, Germany, and Greece.

WhiMSICAL Principal Investigators Associate Professor

Judith Trotman and Dr. Ibrahim Tohidi-Esfahani led the

presentation and responded to questions.

The presentation provided an overview of WhiMSICAL

covering key differences of WhiMSICAL with the IWMF

database. WhiMSICAL has established a robust ethically-

approved WM data-collection platform via CART-WHEEL.

org. WhiMSICAL has demonstrated the feasibility of

generating patient-derived data with excellent recruitment

since June. Ongoing activities involve patient data updates,

expanded recruitment through the broader support of WM

clinicians internationally, and the promotion of WhiMSICAL

by the IWMF and its national afﬁliates. A signiﬁcant increase

in WhiMSICAL data is anticipated in coming years. The

breadth of information gathered will expand knowledge of the

range of presentations and treatment experiences of patients

with WM. This will complement the depth of data derived

from clinical trials and site-based registries. Demonstration of

International Scene, cont. on page 28

28 IWMF TORCH Volume 18.1

International Scene, cont. from page 27

any treatment disparities, coupled with information regarding

treatment efﬁcacy, may facilitate access to subsidised novel

therapies.

Melbourne Meeting with Dr. Steven Treon

Dr. Steven Treon spoke at a WM patient education meeting

at the Melbourne Convention and Exhibition Centre on

November 15, organised by the Leukaemia Foundation. Dr.

Treon was in Australia as an international speaker at the annual

scientiﬁc meeting of the Haematology Society of Australia

and New Zealand. On this occasion, WMozzies history was

repeated. On his last visit to Australia in 2005, Dr. Treon was

at the WMozzies inaugural meeting organised by the IWMF

where he was one of “big three” WM expert speakers at the

International Haematology workshop in Sydney.

Dr. Treon’s presentation this time was on the WM

international perspective. Highlights of his address included

latest international consensus on WM treatments and focus

of ongoing WM research. Professor Miles Prince’s following

presentation was on the WM Australian perspective. He

spoke about the recent publication of the Australian clinical

practice guideline for WM treatment. Important points

highlighted by Professor Prince included:

• Treatment recommendations in Australia differ from

those of international guidelines with a reduced

emphasis on bortezomib, ibrutinib, and other newer

agents due to limited access to Pharmaceutical

Beneﬁts Scheme (PBS) subsidised drugs for the

treatment of WM.

• Bortezomib and ibrutinib are not yet available on

PBS for the treatment of WM.

• Bendamustine, although approved on the PBS for

ﬁrst line treatment of indolent NHL (iNHL), is not

reimbursed for patients with relapsed or refractory

disease.

• Rituximab has been PBS listed for the relapsed

or refractory setting, and access has been recently

expanded for CD20 positive low-grade lymphomas

in the frontline setting.

The panel session included Dr. Treon, Professor Prince,

Associate Professors Judith Trotman and Dipti Talaulikar,

and Dr. Tohidi-Esfahani. The panel answered submitted

questions as well as questions from attendees. A number

of questions related to clinical trials with ibrutinib. Steven

Treon and Judith Trotman, answered these questions with

great authority.

Co-Principal Investigator Dr. Tohidi-Esfahani gave a

presentation on WhiMSICAL Research Study. His

presentation is available for viewing on YouTube via the link

on the WMozzies website in the WhiMSICAL study section.

Australian Guideline on WM Treatment

The Australian WM Treatment Guideline was released

in November. It is a consensus established by the

Australian medical scientiﬁc advisory group (MSAG) to

the Myeloma Foundation Australia. MSAG consists of a

panel of 24 haematologists across Australia, as well as local

experts. The panel includes 7 members who are in IWMF

Directory of Australian WM doctors. They represent 24

Australian organisations covering university departments

of haematology, clinical haematology and BMT, institutes

of medical research, faculties of medicine, health, nursing,

medical and health sciences, and medical schools. Professor

Prince is chair of MSAG. The equal contributor authors

of the guideline are Associate Professors Talaulikar and

Constantine S. Tam. The 24 panel members represent all

states and territories. The Australian WM treatment guideline

is included in the downloadable publications section of the

IWMF website.

The guideline includes tables covering treatment indications,

recommended workup, and differential diagnosis of WM,

International Workshop response criteria, and doses and

schedules of frontline regimens for WM. The section on drug

access in Australia highlights that treatment recommendations

in Australia differ from those of international guidelines as

mentioned above.

Andrew Warden, WMozzies, reporting.

Panelists at the WM patient education meeting sponsored by the

Leukaemia Foundation included Dr. Steven Treon, who was visiting

Australia in the role of international speaker at the annual scientiﬁc

meeting of the Haematology Society of Australia and New Zealand.

To the right of Dr. Treon are: Associate Professor Dipti Talaulikar, Dr.

Ibrahim Tohidi-Esfahani, Associate Professor Judith Trotman, and

Andrew Warden representing the WMozzies.

29IWMF TORCH Volume 18.1

Bleary-eyed after a late night at the fabulous Waldenstrom’s

Macroglobulinemia Foundation of Canada (WMFC)

fundraiser the night before, more than 75 Canadian WM

patients and caregivers gathered 18 ﬂoors above downtown

Toronto for the sixth WMFC Educational Forum on

November 12.

A smiling, welcoming WMFC President Arlene Hinchcliffe

and her volunteer crew were models of efﬁciency and grace

as they greeted and registered Ed Forum participants, then

directed us to the sumptuous breakfast buffet. At promptly 9

am, Arlene welcomed us all, and the learning began in earnest.

First on the podium was Dr. Zachary Hunter from the Dana-

Farber Cancer Institute (DFCI) in Boston (Dr. Hunter was

also recipient of the prestigious Robert A. Kyle Award at

the recent IWWM9 in Amsterdam, see page 1) with a crash

course in Genetics 101, the WM version. Dr. Hunter’s

engaging, precise delivery was enhanced by clear and concise

slides that led us from understanding DNA to cell division,

genomes, and the signiﬁcance of the now-famous MYD88

and CXCR4 mutations in choosing the best therapy to treat

our disease.

Clinical experience has shown that the ﬁrst-generation BTK

inhibitor Imbruvica (ibrutinib) works best in WM patients

who have the MYD88 mutation but not the CXCR4. Dr.

Hunter shared news of an upcoming clinical trial of CXCR4

WMFC EDUCATIONAL FORUM 2016

by Ron Ternoway, Nova Scotia Support Group Co-Leader

inhibitor ulocuplumab, which may improve the effectiveness

of BTK inhibitors for those of us with CXCR4 mutations.

Next up was Dr. Christine Chen of Princess Margaret Cancer

Centre in Toronto, one of Canada’s leading WM specialists. Dr.

Chen took us on a magical history tour entitled “The Evolving

Paradigm of Therapy.” She pointed out how, until recently,

therapies for WM had always been hand-me-downs from more

common lymphomas and leukemias. Starting in the 1980’s

with alkylating agents (cyclophosphamide, chlorambucil)

and purine analogs (cladrabine, ﬂudarabine) through the

1997 innovation of the ﬁrst monoclonal antibody, rituximab

(Rituxan), alone or in combination with other therapies

(CHOP-R, CVP-R, CP-R, DRC, BR), some other blood cancer

patient always got the therapy before a Wally did.

In early 2016 Health Canada approved Imbruvica (ibrutinib)

for use in all WM patients, but in November the pan-Canadian

Oncology Drug Review (pCODR) board rejected a request

for funding the drug through Canada’s Medicare system. As

a result, routine genetic testing of bone marrow for MYD88

and CXCR4 mutations is not done in Canada. It can,

however, be selectively requested by Ontario hematologists

and perhaps by those in other provinces.

The current ﬁrst-line treatments for younger or ﬁtter

Canadian Wallies are bendamustine and rituximab (BR) or

WMFC Educational Forum, cont. on page 30

The audience at The Royal York Hotel was eager and intent on absorbing as much

as possible about all the latest developments concerning WM and treatment options.

30 IWMF TORCH Volume 18.1

WMFC Educational Forum, cont. from page 29

dexamethasone, rituximab and cyclophosphamide (DRC)

followed by 2 years of rituximab maintenance. For older or

debilitated patients, chlorambucil or solo rituximab is the

choice. In either case, re-treatment with the initial therapy is

considered if the time to relapse is more than one year. For

the moment, Imbruvica is only available to Canadian WM

patients with gold-plated health insurance plans or very deep

pockets – or those on a clinical trial. At the time of this report,

new applications to Janssen Canada’s You&I compassionate

care funding programme for WM would be accepted until

December 31, 2016.

After coffee break, Dr. Jorge Castillo brought his

extraordinary bedside manner to the stage as he addressed

“Novel Approaches in WM.” A worthy successor to Dr.

Stephen Treon as head clinician for WM patients at Dana

Farber, Dr. Castillo’s empathy, sense of humour, and profound

understanding of our shared malady was apparent to all.

Dr. Castillo highlighted the signiﬁcance of our nearly-

universal MYD88 mutation as a key to the success of

Imbruvica (ibrutinib) therapy and shared results of the Phase

II clinical trial which led to FDA and Health Canada approval

of the drug for the treatment of WM.

We also learned about ongoing clinical trials at DFCI,

including:

• Ixazomib, dexamethasone, and rituximab in

treatment-naive patients.

• Ibrutinib for treatment-naive patients – a few spots

still available at this writing.

• BCL2 inhibitor venetoclax for previously treated

patients.

Coming soon – trials of anti-CD38

monoclonal antibodies, CXCR4 inhibitors,

and MYD88 blockers.

After lunch, IWMF Research Committee

Chairman Dr. Guy Sherwood presented

details of current IWMF and WMFC-

sponsored for IWWM9 in Amsterdam this

year (see page 5).

Lori Halton, a registered dietitian with

Cleveland Clinic Canada’s Executive

Health program, presented valuable advice

on proper nutrition while undergoing

chemotherapy. She stressed the importance

of maintaining body weight in the face of

loss of appetite and digestive problems. Lori recommended

increased intake of calories, protein, and ﬂuids and reminded

us to avoid antioxidant supplements (Vitamin A, C, E,

selenium and zinc) while on chemotherapy. Plenty of fruits

and vegetables provide phytochemicals that enhance the

body’s ability to heal. High-nutrition drinks like Boost and

Ensure may be used to bolster calorie and protein intake.

Finally, Robin Markowitz, CEO of Lymphoma Canada,

reviewed the pCODR process and their decision to reject the

application for the funding of Imbruvica for WM in Canada.

The Expert Review Committee, composed of oncologists,

physicians, pharmacists, economists, ethicists and patients,

concluded that the limited clinical evidence as to effectiveness

of Imbruvica, the availability of other therapies, and the high

cost of the drug were key factors in their decision. These

concerns outweighed very strong WM patient input as to the

effectiveness, ease of oral therapy at home, and improved

quality life brought about by Imbruvica.

Two Ask the Doctor sessions complemented the uniformly

high quality of the presentations. As the sun set slowly in the

west, our heads spinning from information overload and our

lives enriched by contact with fellow travellers, seven dozen

Wallie Canucks headed home counting our blessings.

WMFC 2017 Ed Forum in Halifax, anyone?

Breaks in the program provided an opportunity for those attending

to speak directly to the presenters. Here Dr. Castillo responds to questions.

31IWMF TORCH Volume 18.1

Support Group News, cont. on page 32

SUPPORT GROUP NEWS

edited by Penni Wisner

Please note!

Contact information for all Support Groups is found on iwmf.

com under GET SUPPORT.

Details of Support Group meetings and other upcoming

events are posted on iwmf.com under EVENTS. Please check

there to conﬁrm details of future events.

CALIFORNIA

Northern California

Laura Ellingson, Professor of Communication at Santa Clara

University, spoke at the October meeting held at Cancer

CAREpoint in San Jose, CA. The topic of her presentation

was “Communicating with Your Doctor.” Her research

focuses on communication in clinics and hospitals. She is

currently completing a study that uses both social science and

art to explore long-term cancer survivorship. Dr. Ellingson

discussed how to prepare for medical appointments and how

to use a partnership approach in order to meet the patient’s

needs and to make the most of the physician’s time. She

included practical ideas as well as suggestions for how to

think about priorities and about the quality of life desired at

each stage of the cancer journey. The following key points

were touched upon as suggestions for doctor appointments:

aim for partnership; be prepared for your visit; communicate

priorities; don’t be bashful; express yourself; ﬁnalize plans

including next steps. After the meeting refreshments were

enjoyed by all.

COLORADO AND WYOMING

On Saturday, October 29, more than 47 people met for a light

lunch sponsored by the Leukemia & Lymphoma Society

(LLS) and a great informative presentation by Dr. Jeffrey

Matous, Medical Director at the Colorado Blood Cancer

Institute and Clinical Professor of Medicine at the University

of Colorado. Dr. Matous gave an overview of WM, followed

Members of the Northern California Support Group at their recent meeting.

Professor Ellingson made a very insightful presentation that

included may tips and practical suggestions, especially for

patients who intend to communicate effectively with their doctors

and share in management of their disease.

32 IWMF TORCH Volume 18.1

Support Group News, cont. on page 33

Support Group News, cont. from page 31

Chicago Support Group Leader Don Brown at the podium during the group’s recent meeting, which coincided with the annual

Lymphoma Research Foundation’s Educational Forum and was held in the Palmer House Hotel, a landmark of downtown Chicago.

The annual summer picnic of the Chicago Support Group is traditionally a well-attended event, and this year was no exception.

33IWMF TORCH Volume 18.1

Support Group News, cont. from page 32

by a recap of IWWM9 (see page 1) held in Amsterdam, which

he had attended earlier in October. Not only was his talk very

interesting, but questions were allowed during and after his

talk, creating a relaxed, informal sharing of information. His

“takeaways” were: how patients are feeling dictates treatment,

not high IgM numbers; and all patients should get current ﬂu

and pneumonia shots. The hot topic of the day was the high

cost of ibrutinib and similar drugs.

ILLINOIS

Chicago Area/SE Wisconsin

Since the last roundup, the group has been busy, meeting for

its annual picnic in August and again in the fall. The picnic

was at Sara and Mike Thran’s home. Sara is a member of

the program committee and a gracious hostess. The picnic as

usual created an atmosphere of friendly fellowship. For the

ﬁrst time, this fall the meeting took place during the annual

Lymphoma Research Foundation’s Educational Forum held

at the Palmer House Hotel in downtown Chicago. Both Dr.

Steven Treon of Dana-Farber Cancer Institute and Dr. Stephen

Ansell of Mayo Clinic Rochester spoke at the weekend-long

conference. Dr. Treon led Saturday and Sunday breakout

sessions on the latest treatments and research relating to

Waldenstrom’s. Despite the fact that Wallies represent a

small minority of total lymphoma patients, about 50 WMers

(out of a total of 375 registrants at the conference) came to

the Forum, adding up to more than 10% of the attendees.

Dr. Treon mentioned that WM-speciﬁc research is now

breaking new ground for all lymphomas. Jesse Brown, event

coordinator for the LRF (and no relation to Don Brown, the

support group’s facilitator), arranged for the group to hold

its own meeting at the venue on Saturday evening. After

introducing some new Waldenstrom’s patients from around

the US and the local area, Carl Harrington, IWMF President,

summarized the IWMF-LLS Strategic Research Roadmap.

Chicago Cubs fans did not lose sight of the history being

made at Wrigley Field during the LRF Forum. Despite losing

their hometown games, the Cubs managed to go on to win in

seven games at Cleveland and to break a historic 108-year

drought! The spring meeting will be at the usual location,

Lutheran General Hospital in Park Ridge, IL.

INDIANA

A smaller-than-usual group met in early November at the

LLS ofﬁce in Indianapolis. Due to technical difﬁculties, the

planned program – to view Dr. Jorge Castillo’s presentation

to the Philadelphia support group – was aborted. However,

the group had so much to talk about that a great round table

discussion ensued, focusing on treatment options and side

effects. One member said that the reason he came to the

meeting was to participate in a discussion! Later, an e-mail

went out to all members with instructions on how to access

Dr. Castillo’s presentation.

NEW YORK

New York City

On a beautiful November afternoon, 28 energetic and talkative

members met at the Mahon Center at Weill-Cornell Medicine

for a spirited discussion about such topics as: new drugs, for

example venetoclax/ABT-199, which one member is taking

in a trial and is doing encouragingly well; side effects; dosage

levels (and who decides – the patient, the doctor, or both?);

doctors who keep patients waiting for hours; frequency of

check-ups; which blood tests are necessary to get a full

picture of health with WM; and more. It was a similar range

of pertinent, perennial questions to those found on IWMF-

Talk. This meeting was the ﬁrst in a long time without a

“newbie” in need of information and empathetic support.

Instead, it was just the usual gang of veterans who continue

to enjoy keeping up with each other and ﬁnd value in the

meetings.

Eastern NY and Western New England

In August our group enjoyed our annual summer picnic. As

each member brought food to share, we satisﬁed our appetites

and enjoyed the conversations. In mid-November the group

met as usual at the American Cancer Society’s Hope Club

in Latham, NY. Two members were the featured presenters,

each discussing a salient portion of their WM journey. Leslie

Neustadt facilitated a session devoted to bendamustine at the

2016 IWMF Educational Forum. The drug continues to be

prescribed as a frontline therapy for WM. Leslie gave the

group some background on bendamustine and discussed

the side effects and efﬁcacy of the treatment. Since she is a

LIFELINE contact for both bendamustine and amyloidosis,

Leslie also described the issues typically raised by callers

to the LIFELINE and how she helps guide them to make

informed decisions about treatment. The second speaker,

Peter Skinner, who is now part of the IWMF planning

committee for the 2017 Educational Forum, shared details of

his experience in a Dana-Farber Cancer Institute clinical trial.

In addition, he discussed new drugs currently in clinical trials

and then launched into news from the Providence, RI, Ed

Forum and the IWWM9 International Doctor-Patient Forum

in Amsterdam. Peter has CLL as well as WM and his clinical

trial (IDR or ixazomib/dexamethasone/rituximab) has meant

excellent results for him. The group broke for a bag lunch

and continued talking, exchanging information, and making

plans for future programs.

Rochester, Western, and Central NY

The upstate NY group is small, about 8-10 active members.

At the last gathering, long-time leader, Stephen French,

asked if Lynn Milliman would take over as group facilitator.

Here Lynn introduces herself in her own words: “My name is

Lynn Milliman and I live in Penﬁeld, NY. I was diagnosed

with WM in 2013 and remain on ‘watch and wait.’ I am being

followed by a hematologist at the Wilmot Cancer Center,

Support Group News, cont. on page 34

34 IWMF TORCH Volume 18.1

Support Group News, cont. on page 35

Support Group News, cont. from page 33

Strong Memorial Hospital, in Rochester. My husband and I

attended the 2016 IWMF Educational Forum in Providence,

RI. It was extremely educational and inspiring. I have been a

member of the local support group for about a year and a half.

The group gathers a few times a year at a local restaurant,

and I look forward to continuing the tradition. With the

help of the more experienced members, I hope to expand

the opportunity to disseminate the latest information on WM

research through printed materials, CDs, and guest speakers.”

EASTERN OHIO,

WESTERN PENNSYLVANIA, AND WEST VIRGINIA

Two new Wallies and their caregivers were warmly welcomed

to the mid-summer get-together at the Cuyahoga County

Branch Library in North Royalton, OH. Members offered them

encouragement and support, sharing their stories of hope, from

treatment to remission to getting good care for WM. By group

consensus, the group viewed Dr. Stephen Ansell’s presentation

from the 2016 Ed Forum, “IWMF Research Roadmap

Overview and Bone Marrow Tumor Microenvironment.”

Dr. Ansell’s hopeful message of new advances in research

and treatment created an optimistic spirit among the group.

As always, an abundant array of snacks and beverages were

available to contribute to an enjoyable afternoon. Then in the

fall, on a warm, late-October afternoon, WMers from as far

as Cleveland met at the home of Marcia and Glenn Klepac

in Pittsburgh, PA. The guest speaker, Theresa Brown, BSN,

RN, home hospice nurse, and author, created a spirited, open

discussion following her presentation of “What Nurses Do.”

Theresa is the author of the New York Times bestseller The

Shift: One Nurse, Twelve Hours, Four Patients’ Lives, a moving

account of the joys and challenges that Theresa experienced

during her shift on an oncology ﬂoor. The discussion laid the

groundwork for members to share personal experiences from

a patient and healthcare professional perspective: two are

retired nurses and another is a retired physician. Improved

communication between doctors and nurses was highlighted as

a key target for better patient care. Refreshments followed –

salad, fruit, sandwich selections, and two fabulous cheesecake

options by our dessert chef, Shari Hall. Members chatted to

catch up on events in their personal lives including their latest

WM updates.

PENNSYLVANIA

Philadelphia

When the clocks change, the days shorten, and the world

feels a little shaken up. Lisa Wise, the area’s Support Group

Co-Leader, offers a cure: gather together with good friends to

enjoy good food in a warm, welcoming atmosphere that builds

connections, heals the heart, and helps Wallies understand

they are not alone on their WM journeys. In November, Lisa

collected more than 20 members together for what is now an

annual autumn gathering. The centerpiece of the generous

More than 20 members of the Philadelphia Support Group met at the home of leader Lisa Wise for their annual autumn meeting.

The lively conversation included exchange of personal news and much useful information. The table chez Wise was spread with

abundant seasonal fare, including the house specialty, vegetarian chili – see page 36 for the recipe.

35IWMF TORCH Volume 18.1

Support Group News, cont. from page 34

buffet was her Vegetarian Chili (see her recipe in Cook’s

Happy Hour page 36), ﬂanked by honey corn bread, hot apple

cider, spinach salad, fresh fruit, and sweets. But the rich and

stimulating group discussion and member “catch up” session

provided real nurturing as well. Participants shared health

updates, exchanged helpful online resources, explained

complex treatment choices, and discussed how to meet the

challenges of the high cost of cancer medications, medical

insurance coverage, and advocacy efforts around parity

issues. Many expressed interest in attending the May 2017

IWMF Ed Forum in Phoenix, AZ. The group collectively

explored possible improvements to the meeting format and

e-mail communications sent between quarterly meetings. An

online survey for members to “rate” their interest in future

meeting topics (such as the effect of a cancer diagnosis on

career, retirement, estate planning, etc.) is in the planning

stages. The power of sharing stories and experiences with a

group of folks who understand because they, too, travel the

same path, is not to be underestimated. A highlight of this

meeting was the gift of a small plant for each member. A

newly diagnosed patient – who happens to be a horticultural

therapist by profession – brought the plants to act as a symbol

of hope and optimism. It was an outstanding gathering, and

everyone really had a ball together.

WASHINGTON

In the fall, the group hosted its big, annual fall meeting at

the Fred Hutchinson Cancer Research Center. This year

about 70 people attended (including some from out-of-state)

to hear several presentations. Dr. Andrew Cowan covered

“What Does a WM Diagnosis Mean for You?” Dr. Ed Libby

discussed “Expect the Unexpected” and “Treatments and

Trials,” and Charlie Pieterick, Advance Registered Nurse

Practitioner (ARNP), spoke about “Finding Support with

Palliative Care.” As usual, the Q&A with Dr. Libby was

lively and covered a wide range of WM-related topics with

lots of useful information. All the presenters are with Seattle

Cancer Care Alliance (SCCA, a union of Fred Hutchinson,

University of Washington Medicine, and Seattle Children’s).

Dr. Libby is a very popular, local WM specialist. He had

recently returned from the IWWM9 in Amsterdam, and he

had some very interesting news about research and new drugs

in the pipeline. The meeting was jointly sponsored by the

IWMF and SCCA.

NORTHERN VIRGINIA/WASHINGTON DC/

WESTERN MARYLAND

Dr. Jorge Castillo of the Bing Center for WM at Dana-

Farber Cancer Institute generously traveled to the area in

July. He brought almost 60 WMers and caregivers up-to-

date with his presentation: “The Latest Advancements in

Waldenstrom’s: A 2016 Update.” He kindly addressed many

questions throughout the two-hour program, elaborating on

speciﬁc topics and relating them to the questioners’ concerns,

allowing all members of the group to beneﬁt from hearing

these extra details. Dr. Castillo lingered for one-on-one

questions from patients, further addressing personal issues.

Afterwards, grateful thanks ﬂooded in to Lu Kleppinger,

group leader, attesting to the delight and excitement caused

by Dr. Castillo’s hopeful news and personal attention.

Dr. Jorge Castillo and members of the Northern Virginia support group who gathered this summer to participate in the two-hour

program during which Dr. Castillo spoke on recent advancements in the management of WM. He generously replied to questions

raised by his remarks and was also available to those attendees who wished to ask about speciﬁc disease-related issues.

36 IWMF TORCH Volume 18.1

COOKS’ HAPPY HOUR

Guest curated by Lisa Wise

Philadelphia Support Group Co-Leader

Lisa, the enthusiastic Philadelphia Support Group Co-Leader,

clearly likes to cook and to bring people together around

good food. Last year, she sent me this recipe which I’ve saved

until now. The stew brims with vegetables and beans, some

canned products for convenience, and a meat substitute. If

processed soy is not your thing, feel free to substitute tofu or

tempeh. And if meat is part of your diet, feel free to replace

the meat substitute with some ground chuck. Herewith, I will

turn the proceedings over to her. Penni

Nothing beats coming in from the cold to a steaming hot bowl

of chili with warm cornbread. Okay, sitting by a pool on a

warm, sunny, summer day might beat it, but in these winter

months, get your cozy on and enjoy a big bowl of veggie love.

It may seem like the recipe takes a long time but it makes 12

generous portions and keeps well, covered and refrigerated,

and disappears pretty quickly.

Heat some olive oil in a large (chose a very large one!), heavy

pot over medium heat and sauté 1 or 2 medium, yellow onions

until soft and transparent. Add some ﬁnely chopped garlic

(the amount depends on you, try 3 large cloves), 1/2 or 1

pound sliced mushrooms (Tip: buy pre-sliced to save time. I

use a mix of cremini, baby portobellos, and oyster mushrooms

when I can ﬁnd them. Otherwise, button mushrooms are

ﬁne.), and lots of coarsely chopped vegetables such as green,

red, and yellow peppers; zucchini; cubed yams or pumpkin;

carrots; parsnips; turnips and rutabagas (anything you

love!). Cook over medium heat until the veggies soften. Stir

regularly to prevent sticking and add a little water if needed.

Add 2 (16-ounce) cans of Heinz Vegetarian baked beans, 1

or 2 (14.7-ounce) cans of Amy’s Organic Vegetarian Chili,

and 1 (28-ounce) can of Hunt’s chopped tomatoes. Bring to a

boil over high heat, then lower the heat to maintain a simmer,

and cook, uncovered, to blend all the ingredients and until the

vegetables are thoroughly cooked.

Heat a small amount of olive oil in a skillet and sauté 1

(12-ounce) package of soy-based “ground beef ” over

medium heat until browned. (Note: I like to use Morningstar

Farms Meal Starter Griller Crumble or Lightlife Smart

Meatless Original Crumbles, two great sources of meatless

protein.) Add a good dose of your favorite bottled BBQ sauce

and cook until melded and hot throughout. Add this to the

vegetable mix, stir well, and continue to simmer gently. Total

simmering time will be about 2 hours.

Season with chili powder, cumin, brown sugar, basil and

other herbs, fresh or dried (anything you like), and salt and

pepper. Make sure to taste before seasoning. Continue to

simmer until all the ingredients come together nicely and the

aroma makes you hungry.

Serve topped with sliced scallions, shredded mozzarella,

Greek yogurt or light sour cream, and hot sauce.

Our motto: Eat Well to Stay Well

Ya know, I really

adore spontaneity,

Wally, providing

it’s carefully

planned.

WALLY and WINNIE, WM Model Mice by Linda Pochmerski

Phoenix, surrounded by radiant red rocks, blue sky, and golden sunshine, is the

cosmopolitan city of Arizona that will host the 2017 Educational Forum.

101 Things To Do!

Plus Ed Forum?! We

may have to act on our

spontaneity to cover

unexpected pursuits.

PHOENIX—

101 THINGS TO DO

GRAND CANYON

NATIONAL PARK

37IWMF TORCH Volume 18.1

SINCE AUGUST 2016, THE FOLLOWING CONTRIBUTIONS TO THE INTERNATIONAL

WALDENSTROM’S MACROGLOBULINEMIA FOUNDATION WERE MADE IN MEMORY OF:

Sandra Adamson

John & Dee Bianucci

Patricia Bonk

Robert & Helen Floyd

Pattie Foley-Munoz

Geogene Harris

Arlene Antilla

Gayle Backmeyer

Marvin H. Arenson

Beth Levin

Marcel Augereau

Waldenstrom France

Dr. John Austin

Paula Austin

Zachary Bartz

Harvey A. Bartz

Freddy Bastin

Nicole Bastin

Eric Birmingham

Joan Birmingham

Gayle Clites

Roy & Fran Clites

Robert M. Coulbourn, III

Bennett Wethered

Rachel Culver

Anonymous

Mildred Davis

Anonymous

Ken & Barbara Hand

Georgene Harris

Eleanor M. Dowd

James Dowd

Ron Draftz

Hubert C. Edfors

Suzanne Herms

Daniel Drexler

Cathy Drexler

Wade Mueller

Kenneth Ewen

Penelope Ewen

George Farrier

Margaret Farrier

Jerry Fleming

Sally Stephens

Amy Foster

Amy Foster Memorial

Bruce WM Warrior Fox

Francine Fox

Melvin Freedman

Muriel F. Goldberg

Patrick Fulton

Jim & Carole Phillips

Philip Gover

Joyce Gover

Ann Gray

Boyd Burkholder

Bob Greene

Ed Goldberg

Alden Vincent Halloran

Nossaman LLP

Mary Lou Haffner

Pat & Stan Czyson

Robert Hakes

Cathy Hakes

Donald L. Hann

Cheryl Hann

Jamie Hilker

The Hoy Family

Donald L. Hann (cont.)

Helen & Lonny Olson-Williams

Laura Weerheim

Edward W. Hardy III

Dorothy Hardy

Eleanor Harrington

Amelia Harrington

Merwin Harrington

Paul Hendricks, Jr.

Eloise Cathcart

Florence Hergesheimer

Jan Hergesheimer

Blanche Heyman

Mrs. Bookman

Frank & Carole Buterwaiser

Terri & Randy Gans

Mr. & Mrs. E. Hochberg

Dr. & Mrs. Joseph Pomerantz

Eve Retzkin

Margaret Gregory Hunt

Ann H. Leonard

Liz Inkpin

Lynette Doorn

Richard Irizary

Sally & Chuck Simpson

K. Edward Jacobi

Richard Baringer

Stella Bishop

Charlotte & Karen Brodfuhrer

Joan & Joe Cichalski

Charles Clemens

Ellen Crimi

Elizabeth DeGiulio

Beverly English

Catherine Goldberg

Jeff Jacobi

Ralph Jensen

Roberta Kilduff

Marilyn Lekas

Alka Lothe

Jane Mawicke

Charles McCleary

David McCleary

Donna McCleary

Katharine McCleary

Melissa McCleary

Robert McCleary

William McCleary

Patricia McCrink

Grace Pak

Corine Peifer

Ellen Peifer

Ruth Spencer

Wendy Turnock

Catherine Johnston

Elizabeth Johnston-O’Connor

Bernice A. Kane

Francis Kane

Terry Kilsby

Kevin Kilsby

Helen Kunz

Mr. & Mrs. Stanley Helsel

Pam Lewkovich

Sandra Banks

Anne P. (Nancy) Lindsay

Margaret P. Stevenson

Foundation

Don Lindemann

Ellen Smith

Audrey Malasky

Teri Sklar

The VanderPlas Family

Renee Mandel

Mark Mandel

Rein Mattes

Barbara P. Mattes

Edward McCleary

Catherine Goldberg

Andree Miller

Stephanie & Bill Brown

Virginia Kickle

Suzanne & Jeff Kobayashi

Jeanne A. Milton

Marshall Milton

Carolyn K. Morris

Ursula Bessing

Albert J. Muehlbauer

Ursula Faix

Roy Parker

Eileen Parker

Bill Paterson

Jan Paterson

Carl B. Petersen

Mary E. Petersen

Karen Pindzola

Anthony Blanco

Cancer Care Associates

of York, Inc.

Kathleen Chapman

Jill & David Emmert

Cindy Furst

Susan Heinle

Ralph & Jane Hendrickson

Mel & Sissy Horowitz

Mrs. K. Edward Jacobi

Marcia & Glenn Klepac

Roy Langhans

Lois McLean

Lisa Newman

Ross F. Schmucki

Anne & Larry Schultes

Lynald & Danielle Silsbee

David Skolnick

Carl & Louise Walker

Lisa Wise

Elizabeth Pye

Jane A. Herchenroder, Esq.

Mary Pye

Anna Mae Quitter

Janine Quitter

Tom Quitter

John Rosenberger

Susan P. Rosenberger

Barbara Rowse

David Rowse

Ben Rude

Mikhail Souponitski &

Susan Gross

Andrew Warden

Lora Sanberg

Jeffrey T. Sanberg

John Sanderson

Sharon Sanderson

Elaine Schenker

Jacqueline Brettler

Richard (Dick) Shelly

Margaret Turnbow

Gary Simpson

Sally & Chuck Simpson

Dan & Estella Singer

Rosamund Crownover

Ian Singer

Rosamund Crownover

Arnie Smokler

Andrew Warden

Robert Murray Steele

Barbara & Robert Lynch

Marie Ellen Stoddard

Judith Workman

William & Mary Sullivan

Maureen A. Sullivan

Richard C. Swain

Barbara Swain

John Thompson

The Wilkinson Family

Robert Titko

Arlene Titko

Bettye Tomlinson

Bruce Fox

Richard Ullman

Martha & Arthur Brody

Fred Waldron

Rebecca Caldwell

Ruth & Leroy Hartstack Family

Ronald G. Hiser

Tony & Janice Mancini

Alexander & Jennifer Tselentis

Karen Waldron

Warren & Evelyn Waldron

Brenda Weaver

Daniel & Patricia Willette

Sara Woods

Jon Warren

Kathleen Warren

Bob Weinkam

The Hsieh Family

Tricia & Jenny Kwan

Winnie Kwan

Julia Wesmiller

Harold S. Wesmiller

Marcia Wierda

Drew & Chelsey Billin

BJW Berghorst & Sons

Kathy Brandt

Loren Brandt

Ron & Bea Brandt

Thomas Brandt

William & Patricia Brandt

Lynelle Brown

Jim & Gloria DeHoop

Friends at Premier

Truck Repair

Bill & Renae Gibson

Ross Hoezee

Eric Hoogewind

John Jenkins – FedEx Services

Rex Kiekintveld

Tony and Hazel Kiekintveld

Kiekover, Scholma &

Shumaker, PC

Roger & Eva Koetje

Mike & Karen Meyer

Judy Motman & Family

James & Janet Reynierse

Barbara & Robert Ricord

Steven & Karen Scholten

James & Elaine Smits

Linda Taylor

Tectran Mfg. Inc

Richard Van Dorp

Dale & Alice Van Farowe

Andy & Tracie Wierda

J. Ronald Windsor

Ian Mitchell

John Wiseman

Sally & Chuck Simpson

38 IWMF TORCH Volume 18.1

SINCE AUGUST 2016, THE FOLLOWING CONTRIBUTIONS TO THE INTERNATIONAL

WALDENSTROM’S MACROGLOBULINEMIA FOUNDATION WERE MADE IN MEMORY OF:

SINCE AUGUST 2016, THE FOLLOWING CONTRIBUTIONS TO THE INTERNATIONAL

WALDENSTROM’S MACROGLOBULINEMIA FOUNDATION WERE MADE IN HONOR OF:

Henry Wright

Arthur Sims

Tom & Frances Wright

Bett Long

Ron Yee

Suzanne Herms

Alexis Long

Joan D. Zeidner

William A. Zeidner

Eugene Burroughs

Jan H. Zimmerman

Antoinette Zimmerman

Albert Zucker

Jeff & Julie Kuhn

Dr. Rafat Abonour

Andrew Seager

Sharon Seager

Sylvia Almstadt

Darla Harkins

Honey Ward

Gail Arcari

Anonymous

John Reisch

David Slover

All Caregivers for Someone

Living with WM

Julianne Flora-Tostado

All IWMF Volunteers

Peter DeNardis

All Survivors

Anita Lawson

All WM Specialists,

Researchers and Patients

Karen Roberts

All WM Patients and

Caregivers

C. Vande Velden

Sandra Allen

Leland Perman

Keith Anderson

Bev Anderson

Tina Ann

Timm Timoney

Linda Atlin & Shelley

Wisefeld

Zack Atlin

Robert Shapiro

Larry Barbuto

Anonymous

Joe Sasso

Paula Sasso

Peg Bohanon

Kathleen Bohanon

David Boyer, Sr.

Linda Boyer

Ronald W. Branscome

Mary J. Branscome

John Brower

Anonymous

Don & Mary Brown

Erik Brown

Katharine Charney

Ann Harris

Ormel & Lois Prust

Mary Brown

Don Brown

Alexis Brynien

Martin Brynien

Gail Burroughs

Eugene Burroughs

Babbie Cameron

Stuart Cameron

Babbie Cameron (cont.)

Susan Campbell

Erica Shore

Mindy Caplan

Anonymous

Anna Caplan

Michael Caplan

Richard Kirschman

Pete Lewis

Amy Webster

Mark Casci

Mary Ann Casci

Dr. Jorge Castillo

Christine Harber

Lisa Wise

Wanda Cebulla

Shalia Basavappa

Susan Hicks

Donald Christiansen

Lucye Christiansen

Maria Colosi

Gia Colosi

Maria Colosi

Rose Crownover

Raymond Valadez

Mark Davey

Megan Davey

Patricia Davey

Ronn Rubio

Mark & Megan Davey

& Family

Patricia McRee

Megan Davey

Mark Davey

Arlene R. Davis

Mary Ann Chartrand

Gil DeLeo

Carla Kobrick

Ted & Leslie Markus

Roberta Malter

Elliot Taub

Karen Del Vecchio

Whitney Seltzer

Peter DeNardis

Erna Brout

Elizabeth Pfenninger

Team DeNardis

Sarah Drudy

Liz Flush

Linda Haberman

Suzanne L. Herms

Lori A. Johnson

Gerri McDonald

Mary Denton-Meier and

William Evans

Penny & Al Katz

Barbara DeWindt

Angela Baeten

Jane Dobies

Karen Dobies

Joseph Dunn

Allyn Dunn

Glen Durmas, Sr.

Charlotte Doss

Lee Ann Fausnaugh

Ed Fausnaugh

Kitty Filippone

Barbara Barnowitz

Stanley Fisher

Gayle Crosby

B. J. Fisher

Stan Fisher

Greg & Debra Floyd

Laurel Floyd

James Hurley

Dennis Jackson

Helen & Oliver Jackson

Larry Jackson

Brian Kaub

Gregg Kerr

Karen Kolba

Emily, Lilly, & Sophie Lynch

Jodi Lynch

Don McClure

Marlene McCutcheon

Richard Muto

Lois Rankin

Nelson Robbins

Doug Schukar

Joseph Thiermann

Sharon Wallace

Catherine Wittrock

Florida Cancer

Specialists Team

Leif Jacobsen

Kelly Foster

Francine Fox

Bruce Fox

Marlyn Friedlander

Gail Clifton

Dr. Richard Furman

Stuart Nagourney

Linda Gallivan

Mary Hatﬁeld

Edward Goldberg

Steven Chess

Greater Kansas City

Community Foundation

Linda Trytek

Jennifer Goldman

Marian Guyton

Dr. Karen Gripp

Daniel Webster

Susan Hamblin

Bob Hammond

Gail Arcari

Carl Harrington

Elie Aslan

Vimukti Aslan

Lori Atkin

Bob Bendix

Robert Bernstock

Connie & Serge Borichevsky

James Cook

Frank DeLeo

Elizabeth Downing

Barbara Emmett

Joellyn Gray

Linda Hahn

Carolyn Handler

Marcie Handler

Karen Horton

Benjamin Levie

Eleanor Levie

Tom Lutzy

Benjamin Maleson

Leon Maleson

Arlene Midash

Sammie Moshenberg

Theolynda Murtaugh

Kimberly Nelson

Christine Ottaviano Shestak

Cheryl Palmer

Glenn Pransky

Rebecca & Ed Schulman

Marc Silver

Lawrence Sternberg

Carl Harrington & Elly Levie

Morry & Dawn Edwards

Davell Hays

Elena Degrande

Pamela Fuson

Eric Hays

Robert Loftus

Marilyn Melton

Patricia Telek

Celeste Hechman

Anonymous

Nancy Brenton

Marci Heller

Laura Simmons

Nancy E. Hess

Anonymous

Jay Brohas

Gerald Slusher

Arlene & Jeremy Hinchcliffe

Andrew & Margaret Stephens

David C. Hill

Mr. & Mrs. Deardorff

Jennifer Hoegerman

Robin Hoegerman

David Horne

Brian Abrahams

Jennifer Adut

Tammie & Jim Baldinger

Joanna & Michael Bopp

Frank Borchert

Elaine Brasch

David Brint

39IWMF TORCH Volume 18.1

SINCE AUGUST 2016, THE FOLLOWING CONTRIBUTIONS TO THE INTERNATIONAL

WALDENSTROM’S MACROGLOBULINEMIA FOUNDATION WERE MADE IN HONOR OF:

David Horne (cont.)

James Brodsky

Daniel Callister

Sharon Camhi

Sean Cassidy

Andrew Cohen

John & Sally Cox

Melody Fennel

Judith Friedman

Mary Fullington

Robert E. Gardinier, Jr.

Laurence Groner

Sally Higginson

Amy Horne

Robert Horne

Sarah Horne

Steven Jacobson

Stephen Kahn

Shelly Kupfer

Rick Lazio

Jay Lindy

Douglas Loeser

Eva Loeser

Matthew McCardle

Brad Mont

Paul Rosenzweig

Pam Salzman

David Schaeffer

Philip Schwartz

Marysue Shore

Bradley Stillman

Scott Sudduth

The Horne Family

Katie Esposito

Beata Howe

Wayne Cutler

Jonathan Harkins

George Hood

Beata Howe

Janet Hunter

Deborah Jeffrey

Tracy Metzger

Carol Newton

Carol Potter

Kathleen Shea

Penny Sullivan

Gene Villarreal

Teresa Walton

Gwen Hughes

Edith Perman

Dr. Zachary Hunter

Christine Harper

Wanda Huskins

Andrew Baron

Sage Baron

Bernadette Bompensiero

Dennis Huskins

Rachel Johnson

Neal Makens

Jeff Prupis

ShariAnn Quirk

Naomi Raynor

Paul & Carolyn Ritchie

Karen Ivens

Stephen Ivens

IWMF

Larry Dwiggins

The IWMF Board of Trustees

Barbara Manousso

John Jenkinson

Stephen Chenoweth

Julie Jenkinson

David Johnston

Don & Susan Johnston

Liz Johnston

Mike Kanieski

Stills Marqua

Toby Kevin

Patricia Kevin

Joyce Kleinhenn Deaton

Lois Kleinhenn Lanier

Michael Knowlton

Shelby Knowlton

Elaine Kozlowski

Thomas Beard

William Downs

Eric Elstro

Thomas Handloser

Daniel Kozlowski

Elaine Kozlowski

James McNulty

David Shay

Lori Sosnowski

Dr. Steven Krause

Karen & Jerry Eisman

Dr. Robert Kyle

Cindy Furst

Marlyn Friedlander

Madeleine Lacombe

Bertrand Lacombe

Ricardo Leigh

The Gidcumbs

Ruth Lizotte

Anonymous

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22nd Annual

IWMF Educational Forum

Imagine a Cure: Mapping Our Future

May 19-21, 2017

Phoenix, Arizona

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Visit www.iwmf.com to register online and for program details