Fall 2007 - International Waldenstrom's Macroglobulinemia ...

iwmf torch 

Fall 2007 

INTERNATIONAL WALDENSTROM’S MACROGLOBULINEMIA FOUNDATION 

RESEARCH AND CLINICAL 

HIGHLIGHTS OF 

THE 4th INTERNATIONAL 

WORKSHOP ON WM 

by Guy Sherwood, M.D. 

The 4th International Workshop on WM was held in June 

on the beautiful island of Kos, Greece, the birthplace of 

Hippocrates, “the father of medicine.” Despite a nearly 

tropical climate outside and malfunctioning air-conditioning 

indoors, a number of stalwart lymphoma specialists from 

all over the world endured the challenging atmospheric 

conditions to discuss and debate issues pertaining to 

WM research and the clinical implications of various 

treatment protocols. 

In a series of two articles for the Torch, I will summarize the 

numerous oral and poster presentations. The present article 

will review the proposed consensus recommendations 

for the treatment of WM and some of the oral and poster 

sessions. In the next issue I will complete our review of the 

research and clinical highlights of the Kos conference on 

WM, which was co-sponsored by the IWMF. 

Of the 25 oral presentations, 7 dealt with the genetics, 

pathophysiology, and staging system of WM, 6 dealt with the 

frontline treatment of WM, and 11 dealt with the treatment 

of advanced disease, including novel treatment approaches. 

Thirty WM research posters were also presented. 

Of particular importance was the last event of the conference, 

a special session devoted to a review of the consensus on 

WM treatment reached at the 3rd International Workshop 

(Paris, 2004). 

PROPOSED TREATMENT RECOMMENDATIONS 

At the most recent meeting of the American Society of 

Hematology last fall in Orlando, the IWMF Vice-President 

for Research, Dr. Tom Myers, and I met with many 

members of the IWMF Scientific Advisory Committee 

including Drs. Robert Kyle, Morie Gertz, Steven Treon, 

Research Clinical Highlights, cont on page 6 

MORE FUNDS, MORE RESEARCH, 

MORE HOPE FOR A CURE 

by Tom Myers 

Hope for a cure, the aspiration common to all members of 

the IWMF, is the driving force behind the IWMF Research 

Fund. In the following overview, the Vice President for 

Research describes new and ongoing research projects 

supported by the IWMF Research Fund in order to make 

this hope become reality. 

Fonseca Lab of Mayo Receives $74,274 Grant From 

IWMF - Dr. Esteban Braggio of the Mayo Laboratories 

in Scottsdale, Arizona, has just been awarded a one-year 

grant by the IWMF Board of Trustees to continue the 

genetic studies previously begun by Dr. Rafael Fonseca 

and his associates. Dr. Braggio’s study, “Genomic-Wide 

Characterization of DNA Copy Number Changes,” will 

use the latest scientific tools for identifying disease-related 

genes. The objective of his research is to facilitate the 

development of improved diagnostics, outcome predictions, 

and personalized approaches to treatment of the disease. 

More Funds, More Research, cont on page 9 

HOLD THAT DATE! 

We hope you will join us at our 2008 Educational Forum, 

which will be held May 16-18 in Los Angeles. Further 

details and registration information will be provided in the 

next issue of the Torch and at our website, www.iwmf.com. 

Inside this issue 

President's Corner.............................................2 

What Is Flow Cytometry?..............................3 

Medical News Roundup....................................4 

Administrative Matters.....................................5 

Treasurer’s Report............................................ 8 

Help Leave A Lasting Legacy........................ 10 

Planned Gift/Heritage Society Inquiry...... 10 

From Iwmf-Talk................................................11 

Support Group News ......................................14

PAGE 2 

OFFICERS & TRUSTEES 

FOUNDER 

Arnold Smokler 

PRESIDENT 

Judith May 

VICE PRESIDENTS 

James Bunton 

Tom Myers, Jr 

Guy Sherwood, M.D. 

SECRETARY 

James Berg 

BOARD OF TRUSTEES 

Arlene Hinchcliffe 

Elinor Howenstine 

Robert A. Kyle, M.D. 

Don Lindemann 

Dave Lively 

Roy Parker 

Karen Pindzola 

Richard Weiland 

Ronald Yee 

BUSINESS OFFICE 

Sara McKinnie, Office Manager 

Don Lindemann, Torch Editor 

IWMF SCIENTIFIC 

ADVISORY COMMITTEE 

David Agus, M.D. 

Cedars-Sinai Medical Center 

Bart Barlogie, M.D. 

University of Arkansas 

Morton Coleman, M.D. 

New York Presbyterian Hospital 

Meletios A. Dimopoulos, M.D. 

School of Medicine, 

University of Athens 

Christos Emmanouilides, M.D. 

Interbalkan European Medical Center 

Stanley Frankel, M.D. 

Merck & Co., Inc. 

Hoffmann-La Roche 

Morie Gertz, M.D. 

Mayo Clinic 

Robert A. Kyle, M.D. 

Mayo Clinic 

Veronique Leblond, M.D. 

Hopital Petie Salpetriere 

James Mason, M.D. 

Scripps Clinic 

Gwen Nichols, M.D. 

Hoffmann-La Roche 

Alan Saven, M.D. 

Scripps Clinic 

Steven Treon, M.D. 

Dana Farber Cancer Institute 

Mary Varterasian, M.D. 

i3Drug Safety 

Donna Weber, M.D. 

M.D. Anderson Cancer Center 

The conference attracted approximately 1,700 participants, with the first four 

days devoted to multiple myeloma (Monday through Thursday) and one evening 

and two days devoted to Waldenstrom’s macroglobulinemia. Since multiple 

myeloma is much more common than WM and has the interest of many more 

doctors and researchers, more sessions at the Kos Workshop were devoted to it 

than to WM. On Thursday evening a symposium on “Advances in the Biology 

and Therapy of Waldenstrom’s Macroglobulinemia” was attended by about 240 

doctors and researchers. The sessions on Friday and Saturday, however, drew 

fewer participants. This edition of the Torch includes Part 1 of a scientific report 

of the Kos workshop provided by Dr. Guy Sherwood. 

President's Corner, cont on page 3 

President 

Judith May 

Editor 

Don Lindemann 

Guest Editor (FaLL '07) 

Alice Riginos 

Medical News Editor 

Sue Herms 

PRESIDENT’S CORNER 

by Judith May 

The Fourth International Workshop on Waldenstrom’s 

Macroglobulinemia was held in late June on Kos Island, 

Greece. This workshop is held every other year in a 

different location to bring together the international 

researchers who have conducted research and clinical 

trials on our disease. The workshop provides a forum for 

sharing and discussion of new information, for forging 

a consensus on revisions to the current understanding 

of how WM is diagnosed and treated, and for reviewing 

responses to treatment. The IWMF Board members 

attending the conference were Tom Myers, VP for Research; Guy Sherwood, M.D., 

VP for Member Services; Robert Kyle, M.D., Director of IWMF’s Scientific 

Advisory Committee, and Judith May, President. 

This was the first time that the International Workshop on WM and a similar 

workshop on Multiple Myeloma were combined. The idea to combine the two 

workshops stemmed from the high cost and necessarily time-consuming fund 

raising efforts with pharmaceutical companies in order to find support for two 

separate workshops. The Board is now discussing whether we will continue to join 

the myeloma researchers or whether a separate workshop best serves the IWMF. 

The IWMF Torch is a publication of: 

International Waldenstrom’s Macroglobulinemia Foundation 

3932D Swift Road • Sarasota, FL 34231-6541 

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

E-mail: info@iwmf.com • Website: www.iwmf.com 

Senior Writers 

Jim Berg 

Guy Sherwood 

Support Group News 

Penni Wisner 

Talklist Correspondent 

Mitch Orfuss 

Layout 

Sara McKinnie 

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.

President's Corner, cont from page 2 

In the past the IWMF has always participated in the bi-annual 

International Multiple Myeloma Workshop by having a booth 

at the conference to answer questions and distribute our 

literature. This has proven to be a successful way to interest 

new researchers in applying for grants, and it is also a good 

way to add doctors and researchers to our mailing list and to 

provide them with information on our disease. Often doctors 

are willing to have IWMF publications sent to their offices 

and clinics for patient use. At previous multiple myeloma 

workshops we met doctors and scientists from Greece, China, 

India, and France who were interested and willing to work 

with us to develop new support groups in these countries. 

The booth provided a great opportunity to meet many medical 

professionals who often told us how impressed they were with 

our booklets and leaflets, many of which have been translated 

into other languages. (Currently publications are available in 

Spanish, French and German, and we are looking into further 

translations into Greek and Chinese) 

* * * 

A separate conference is being planned with our National 

Cancer Institute contact, Dr. Richard Little. This would be a 

one- or two-day think tank meeting of researchers to sort out 

the future direction for WM research and to specify where the 

IWMF Research Funds could have the most impact. Planning 

for this conference is yet in the developmental stage, and more 

will be announced when we have the details confirmed. 

* * * 

For all those with peripheral neuropathy, there will be a 

free telephone education workshop for people living with 

cancer, their families, friends, and health care professionals. 

CancerCare is the sponsor of this workshop, which will be held 

on Tuesday, October 30, from 1:30 – 2:30 p.m. Eastern Time. 

You must register in advance and can do so by calling 1-800- 

813-HOPE [4673], or register online at www.cancercare.org. 

* * * 

The National Cancer Institute reports two newsworthy 

items from the Centers for Medicare and Medicaid Services 

concerning premiums for Medicare Part D and a tip sheet for 

Medicare drug coverage. 

Due in large part to strong competitive bidding by health 

and prescription drug plans and beneficiaries’ choices, the 

Centers for Medicare & Medicaid Services (CMS) anticipates 

that the actual average premium paid by beneficiaries for 

standard Part D coverage in 2008 will be roughly $25. This 

is nearly 40 percent lower than originally projected when the 

benefit was established in 2003 and also lower than projected 

earlier this year. 

A new partner tip sheet, Information Partners can Use: 

Medicare Drug Coverage under Medicare Part A, Part B 

and Part D, has been developed to provide an overview on 

the drugs covered within each of the Medicare program 

components. This tip sheet helps clarify drug coverage for 

providers and partners assisting beneficiaries with chronic 

diseases and drug coverage enrollment. 

For more information on the above items, go to 

www.cms.hhs.gov. 

* * * 

The IWMF has a new Vice President for Administration. 

IWMF Trustee Roy Parker will be taking on the job, relieving 

Jim Bunton, our current V.P. for Administration and also 

IWMF Treasurer, of this responsibility to focus solely on his 

duties as Treasurer. The Vice President for Administration 

has an internal role as overseer of the functions and staff at 

our headquarters in Sarasota, Florida. We are fortunate to 

have Roy in this position, and certainly his background in 

business will be helpful. Roy will also continue as Chair of 

the International Committee. 

In closing, I would like to remind you of our ever-constant need 

for your support through IWMF membership dues assuring 

continued member services and through contributions to 

the IWMF Research Fund to underwrite research studies on 

our disease. 

Stay Well, 

Judith 

WHAT IS FLOW CYTOMETRY? 

by Sue Herms 

One of the most frequent uses of flow cytometry in medical 

diagnosis is to distinguish among the various types of 

leukemias and lymphomas. Flow cytometry may be 

particularly helpful in cases where analysis of cancer cells 

under the microscope is not adequate to determine the 

specific type of tumor present. 

The modern flow cytometer consists of a light source, 

collection optics, electronics, and a computer to translate 

signals to data. In most modern flow cytometers, the light 

source of choice is a laser that emits light at a specified 

wavelength. Scattered and emitted light is collected by two 

detector lenses (one set in front of the light source and one 

set at right angles). 

In the diagnosis of leukemias and lymphomas, usually a 

portion of the bone marrow or other tissue, such as a lymph 

node, is broken up into single cells and placed in a liquid— 

the cells in the liquid then flow through a chamber, one at a 

time very quickly, up to several thousand cells per second. 

At this point, the laser beam hits the cells as they pass. The 

way the laser beam light bounces (scatters) off each cell is 

What is, cont on page 20 

PAGE 3

PAGE 4 

MEDICAL NEWS ROUNDUP 

by Sue Herms 

Ruling on Erythropoiesis-Stimulating Treatment by 

the Centers for Medicare & Medicaid Services – The 

Centers for Medicare & Medicaid Services determined 

that erythropoiesis-stimulating treatment (Procrit, Aranesp, 

Epogen) is not reasonable and necessary for anemia of 

cancer, hemolysis, bleeding, bone marrow fibrosis, or various 

deficiencies related to iron, B-12, or folate. The treatment 

is considered reasonable and necessary for cancer patients 

if the anemia is secondary to chemotherapy treatment and 

the hemoglobin level is

Medical News, cont from page 4 

in infection-related deaths and a higher rate of opportunistic 

infections in those patients who are also HIV positive. 

More Results on Zevalin and Bexxar – The Mayo Clinic of 

Rochester, Minn., reviewed the results of four clinical trials 

involving the use of Zevalin at 30 U.S. medical centers for 211 

patients with recurring or refractory B-cell non-Hodgkin’s 

lymphoma. Median overall survival was 49.3 months. The 

patients most likely to have long-term remission had nonbulky 

disease and achieved a complete response following 

treatment. The University of Michigan Comprehensive 

Cancer Center followed 76 follicular NHL patients after 

treatment with Bexxar. Eight years following therapy, 86% 

of patients were still alive and 50% had not had a relapse of 

their disease. 

Blood-Forming Stem Cells Produced from Fat 

Tissue – Researchers from the University of Pittsburgh School 

of Medicine report that they have found a way to isolate and 

culture human blood-forming stem cells from fat tissue. The 

researchers are hoping that this might be a method of giving 

patients who need bone marrow transplantation their own 

blood-forming stem cells derived from a source other than 

their defective bone marrow. 

Faster Infusion Schedule for Rituximab in Canadian 

Study – The University of British Columbia, Vancouver, 

Canada, has developed a 90-minute infusion schedule for 

rituximab, in which 20% of the dose is administered in the 

first 30 minutes, and the remaining 80% over 60 minutes. 

The rituximab infusion is combined with corticosteroids 

for this protocol. Only one of 1200 patients receiving this 

infusion approach developed a serious reaction, and it was 

successfully managed. 

Nucleoside Analog Treatment Poses Increased Risk for 

Transformation to Aggressive Lymphoma or Leukemia – 

A presentation at the 2007 Annual Meeting of the American 

Society of Clinical Oncology (ASCO) concluded that there 

is an increased risk of transformation to aggressive B-cell 

lymphoma or development of myelodysplastic syndrome/ 

acute myelogenous leukemia (MDS/AML) following 

treatment with nucleoside analogs. A total of 326 patients 

were investigated, with 173 patients previously treated with 

nucleoside analogs and 153 patients treated with other 

chemotherapies. Among patients treated with nucleoside 

analogs, 10 (5.7%) developed either disease transformation 

or MDS/AML at a median time of 48 months following 

treatment; only one patient on other therapies experienced 

this complication. 

New Proteasome Inhibitor Used for Immune System 

Cancers – Another report from the 2007 Annual Meeting of 

ASCO by K. A. Stewart, et al., presented information on two 

Phase I dose studies of a new proteasome inhibitor named 

carfilzomib (PR-171). A total of 54 patients with multiple 

myeloma, Hodgkin’s disease, non-Hodgkin’s lymphoma, and 

WM are enrolled. Several responses have been observed with 

no peripheral neuropathy and only one dose-limiting toxicity. 

Canadian Study of Bortezomib for WM – The National 

Cancer Institute of Canada has reported the results of a Phase 

II study of bortezomib as a single agent treatment for 27 

untreated or previously treated WM patients. Seventy-eight 

percent of these patients achieved at least a 25% reduction 

in IgM levels. The most common toxicity seen in this study 

was reversible peripheral neuropathy. 

The author gratefully acknowledges the efforts of Howard 

Prestwich, Bert Visheau, Mike Dewhirst, Gareth Evans, and Neil 

Schweer in disseminating news of interest to the WM community. 

ADMINISTRATIVE MATTERS 

By James Bunton 

2007 Educational Forum DVDs We are very sorry about 

the lengthy delay in making available copies of the DVDs for 

the 2007 Educational Forum. 

Unfortunately, just as the preparation of the tapes was 

nearing completion, one of our volunteers had a complete 

wipe-out of his computer hard drive. This meant starting all 

over again and reloading from the raw tapes recorded at the 

forum, inserting the presenters’ slides, and editing the whole 

thing over again. This set back means the finished product 

will not be available until the middle of November. 

Once again our apologies for the inconvenience caused by 

this delay. 

Special skills Do you have a special skill or training? 

On occasion the trustees will consider initiating a new 

member service, or enhancing an existing one, but find they 

are inhibited in this by a lack of expertise in that area. We 

expect there are members with such expertise but do not 

know who they are. It was suggested that we would be better 

able to use volunteers if we had some idea of the special 

skills or training available among our members. 

Accordingly, we would like to build up an inventory of 

members with special skills or expertise and who would 

be willing to volunteer to help IWMF. Some of the areas 

that come quickly to mind are legal training, website 

administration, computer skills, fundraising and project 

management. If you are interested and have a skill you can 

volunteer, please send your name to the business office and I 

will be in touch with you with further information. 

PAGE 5

PAGE 6 

Research Clinical Highlights, cont from page 1 

Veronique Leblond, Irene Ghobrial, and Meletios Dimopoulos 

(principal organizer of the upcoming Kos workshop). Dr. 

Myers insisted, and Dr. Dimopoulos agreed, that the workshop 

should include a consensus panel charged with updating the 

treatment recommendations for both frontline and salvage 

therapy from the 3rd International Workshop on WM . 

As we are all aware, the pace of scientific research continues 

unabated, and numerous new treatments have come into 

existence and have been evaluated in rigorous clinical trials 

since October 2004. The IWMF is proud to have encouraged 

and facilitated the updated recommendations for new 

treatment guidelines for WM. It is important to note that 

the recommendations outlined in this article have not yet 

been fully implemented. Drs. Treon and Dimopoulos will 

now present the Kos recommendations to a number of WM 

clinical experts for final approval; scientific publication will 

follow in the clinical literature. The IWMF will also update 

two of its most important publications, “Treatment Options” 

(August 2003) and “Questions and Answers” (August 2003). 

What follows is an outline of the proposed recommendations 

for both frontline (initial) and salvage (after the first failed 

remission) therapy, updating the previous recommendations 

issued following the 3rd International Workshop on WM in 

2004. I include as well my own comments and observations 

since I was privy to the interesting and lively debate which 

took place on the very warm island of Kos. 

1. Frontline therapy 

Frontline (up-front) therapy for WM (in never-before treated 

patients) includes: 

Monotherapy (single agent therapy) 

• alkylator agents cyclophosphamide (Cytoxan), 

chlorambucil (Leukeran) 

• nucleoside analogs such as fludarabine (Fludara), 

cladribine (2CdA), and pentostatin (Nipent), which 

is used more commonly in Europe 

• the monoclonal antibody rituximab (Rituxan) 

Combination therapy 

• (RF, RC, RP) rituximab + fludarabine/cladribine/ 

pentostatin 

• (R-CHOP) rituximab + cyclophosphamide + 

doxorubicin (Adriamycin) + vincristine (Oncovin) + 

prednisone 

• nucleoside analogs + cyclophosphamide +/- 

rituximab 

• (DRC) dexamethasone (Decadron) + rituximab + 

cyclophosphamide 

• thalidomide (Thalomid) + rituximab 

Comments 

• Since WM patients are at increased risk of chemoinduced 

peripheral neuropathy, bortezomib (Velcade) 

was not considered upfront therapy because of the 

high risk of neuropathy. However, the incidence of 

Velcade-induced neuropathy decreases greatly with a 

reduced dosing schedule such as weekly versus twice 

weekly. New generations of proteosome inhibitors 

from the Velcade family show no neuropathy in early 

trials. 

• Alkylator agents are not recommended in young 

patients (


leukemia (AML), or transformation of WM to diffuse 

large B-cell lymphoma (DLBCL) with the use of 

nucleoside analogs, particularly fludarabine, was 

felt to need more data and review before a consensus 

statement could be made. 

• It is too early to recommend rituximab maintenance 

as long-term data are not yet available. 

• Age is an important factor for deciding which initial 

monotherapy to use (age 65 is the unofficial cut-off 

point); however, the measurable Performance Status 

of the patient is very important (a “young” 70 year 

old as opposed to a very sick 45 year old). 

• Special attention and caution are needed when 

using lenalidomide (Revlimid) in WM because of a 

possible rapid onset anemia (this is not seen in MM 

or CLL). 

• Autologous bone marrow transplants are 

increasingly viewed as valuable therapeutic options 

for the appropriate patient as the data on survival and 

duration of remissions are superior to many other 

conventional treatments. 

• Allogenic transplants should only be considered 

when absolutely necessary and in the context of a 

clinical trial. See the above comments on RIC or 

mini-allo transplants, which may be appropriate in 

exceptional cases. 

ORAL AND POSTER PRESENTATIONS 

Genetics, Pathophysiology and Staging System 

Many new and exciting discoveries are being made in the 

biology of WM. To date, however, problems still arise in the 

accurate differentiation between WM and other similar non- 

Hodgkins B-cell immunoglobulin (Ig) secreting lymphomas. 

Of particular interest is the family tree of the WM cell and 

determining the cell of origin along the B cell developmental 

path that gives rise to the WM tumor cell. Most current 

research has centered on the WM cell’s inability to “switch” 

from the initial production of IgM to the production IgG or 

IgA (see the IWMF publication “Introduction to Immunology 

in WM”). From the study of this “class switch” phenomenon 

(from IgM to IgG and IgA), which is arrested at the IgM 

level in WM (neoplastic arrest), and from the study of the 

immunoglobulin gene rearrangements, mutations, and class 

switch recombination, scientists are gaining insight into 

the dissimilarities between WM and IgM-MGUS. (MGUS 

refers to “monoclonal gammopathy of undetermined 

significance,” which is specified as IgM-MGUS in cases 

where the monoclonal protein is IgM.) This could suggest 

a distinct differentiation process between WM and IgM- 

MGUS. Furthermore, these studies will enable scientists to 

identify the differences and similarities between WM and 

other B-cell lymphoproliferative disorders, and this, in turn, 

can help to explain how the WM tumor cell is produced in 

the B-cell differentiation process. 

Dr. Linda Pilarski, a research scientist at the University 

of Alberta Cross Cancer Institute and a recipient of a large 

IWMF research grant, has focused her research on hyaluronan 

synthase 1 (HAS1). This large sugar molecule is important 

in cell motility, signaling, and mitosis (cell division). Dr. 

Pilarski’s laboratory has identified three different gene variants 

of HAS1, two of which are the result of partial retention of 

a particular segment of DNA in the gene (an intron) that 

is found only in patients with WM or multiple myeloma. 

“Intronic splicing” is seen only in cancer cells and is not 

found in the cells of healthy individuals. The identification 

of these gene variants holds promise of the development of a 

DNA lab test permitting not only individual risk assessment 

strategies for early detection and monitoring of malignancy 

before, during and after therapy, but also assessment of 

response and prediction of relapse. Furthermore, the pattern 

of tumor-specific DNA mutations may provide a common 

marker, or ID tag, for all such patients. It may also be possible 

to use DNA lab testing to monitor IgM-MGUS for the early 

stages of emerging malignancy, response to treatment, and 

identification of the monoclonal gammopathies that have the 

greatest risk of transformation to WM. 

Dr. Rafael Fonseca, a clinical researcher from the Mayo 

Clinic in Scottsdale, Arizona, and an IWMF research 

grant recipient, has also focused on the genetics of WM. 

His prolific gene expression profile studies have recently 

suggested that WM shares more similarities with chronic 

lymphocytic leukemia (CLL) than multiple myeloma (MM). 

Dr. Pilarski, however, contests this observation because her 

lab research suggests that WM is closer to MM, not CLL. Dr. 

Fonseca argues that, while clinically similar, the cytogenetics 

and genomics underlying MM and WM are quite different. 

The genetics of WM appears to be much simpler than those 

of MM, with fewer abnormalities (the 6q deletion is the 

most frequent abnormality in WM, observed in 16% of 

WM patients). Newer laboratory tools, such as array-based 

comparative genomic hybridization and gene expression 

profile, enable researchers to realize high-resolution whole 

genome screenings for abnormalities and to gain insight into 

the consequences of genomic alterations noted in WM. As is 

the hope of many WM patients, future therapeutic decisions 

may be based solely on practical clinical tools such as 

genomic studies. 

Dr. E. Morra of Italy evaluated the existing diagnostic 

criteria used to separate IgM-MGUS from SWM (smoldering 

or asymptomatic WM). Until recently, a reliable distinction 

of asymptomatic populations with different risks of 

transformation into active disease was not available. The 2 nd 

Research Clinical Highlights, cont on page 8 

PAGE 7

TREASURER’S REPORT 

AS OF JUNE 30, 2007 

James Bunton, Treasurer 

The finances of IWMF are operated through two separate 

funds: the Research Fund and the Operating Fund. 


International Workshop on WM (Athens, 2002) recognized 

that the sole parameter distinguishing SWM from IgM-MGUS 

is the presence, established by microscopic examination, of 

lymphoplasmacytic non-Hodgkin’s lymphoma cells in the 

bone marrow. 

PAGE 8 

The Research Fund accounts for all contributions received 

for research and is charged only for funds to be expended on 

approved research projects. 

The Operating Fund accounts for contributions from 

members that are not designated as being for research, such 

as membership contributions. This fund is charged with all 

member services expenses and all operating expenses (none 

of which are charged to the Research Fund). 

Following is a summary of the financial results for its first 

six months of 2007: 

Research Operating Total 

Income $323,000 $128,000 $451,000 

Expenses 275,000 275,000 

Net Income or 

(loss) $323,000 ($147,000) $176,000 

Income in the Research Fund was very encouraging in 

the first half of the year as a result of some significant 

contributions, especially from our pledge contributors. No 

research projects were approved in the first half of the year. 

As a result the fund had no expenses and the net income 

in the Research Fund was equal to the gross income for 

the period. The research award approved in August to Dr. 

Braggio at Mayo, mentioned elsewhere in this issue, will be 

an expense of the last half of the year. 

Unfortunately, the results in the Operating Fund are quite 

different. Expenses for the first six months were very high, 

increasing $100,000 over the same period last year. The 

major increases in cost this year were the Educational Forum, 

fundraising, and especially the printing costs and related 

postage of three new major booklets for WM members. While 

the resulting net loss of $147,000 is cause for concern, we 

should keep in mind that our annual membership campaign 

is held in the last few months of year. That is when a large 

share of our members’ contributions to the Operating Fund 

are received. 

In the next few weeks you will be receiving a letter asking 

you to make a membership donation. Please consider our 

current net loss situation and try to increase your donation 

to a higher level than in the past. IWMF needs a healthy 

Operating Fund to continue its current member services and 

add new ones to assist our members. 

Dr. Morra’s more recent study evaluated the prognosis for 

patients with IgM-MGUS versus patients with SWM. She 

noted that IgM-MGUS patients have a slight overall survival 

advantage compared to SWM patients but noted as well 

that SWM patients have a mortality rate equivalent with 

that of the general population. Risk factors for evolution 

of IgM-MGUS into WM or evolution of SWM into active 

WM were generally comparable. Increasing levels of IgM, 

detection of protein in the urine, decreased levels of IgG 

and/or IgA, anemia and other red blood cell abnormalities, 

elevated ß2-microglobulin, and other irregularities could 

predict evolution into more aggressive disease. Dr. Morra 

concluded that IgM-MGUS may be considered as the first 

step of an indolent lymphoproliferative disease and as such 

recommended periodic bone marrow biopsy evaluations as 

well as the requisite blood tests. 

Dr. Pierre Morel of France expanded on the role of prognostic 

factors in WM. He reported on an International Prognostic 

Scoring System for Waldenstrom’s Macroglobulinemia 

developed by a number of cooperative groups and institutions. 

Review of patient records, essentially retrospective analyses, 

identified several risk factors that were consistently associated 

with a poor clinical outcome. The combination of advanced 

age, IgM levels, low hemoglobin concentration, low platelet 

count, low serum albumin concentration and an elevated 

serum ß2-microglobulin provides a simple prognostic model 

for survival in WM. 

Part 2 of this article will be presented in the winter edition 

of the Torch. 

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 

Don Lindemann at 510-848-4069 or 

torcheditor@gmail.com

More Funds, More Research, cont from page 1 

New Classes of Drugs to Treat Waldenstrom’s 

Macroglobulinemia - In research sponsored by the IWMF, 

Dr. Constantine Mitsiades at Dana-Farber has identified 

several chemical agents which are effective in the treatment 

of WM; those agents are the foundation of research currently 

conducted by Dr. Steven Treon’s group at the Bing Cancer 

Lab at Dana-Farber. 

The agents studied by Dr. Mitsiades are the proteosome 

inhibitor PS-341 (bortezomib), thalidomide derivatives 

(pamilidomideor, Actimid) and heat shock protein inhibitors 

(hsp90). His work focuses on the molecular basis of their anti- 

WM activity and shows that each of these agents interferes 

with the signaling functions associated with apoptosis, 

proliferation of WM cells, and the activation of genes that 

cause increased production of WM cells. Dr. Mitsiades also 

demonstrated that these agents enhance the activity of other 

anti-cancer agents. 

Factors Regulating Immunoglobulin-producing B-cells 

in Patients With Waldenstrom’s Macroglobulinemia - Dr. 

Stephen Ansell of the Mayo Clinic in Rochester, Minnesota, 

had an initial IWMF grant to study the activity of B-lymphocyte 

stimulator (BLyS) in regulating the proliferation of WM cells. 

To date, progress has been made in showing which chemical 

parts of BLyS effect WM cell growth, and several variations of 

BLyS have been synthesized and are being studied for activity. 

Dr. Ansell also demonstrated that other cytokines (proteins) 

cause the growth and death of WM cells. As a second phase 

of his project he proposed a study focused on these cytokines 

and received funding from the IWMF. He has already 

successfully shown that cytokines previously known to be 

active in vitro are also active in vivo. Moreover, his work has 

determined that IL-6 in combination with BLyS increases the 

production of WM cells and that IgM production increases in 

the presence of the connective (stromal) cells in tissues. 

Molecular and Functional Sequelae of the P13K Pathway 

in Waldenstrom’s Macroglobulinemia - Dr. Irene Ghobrial 

of Dana-Farber is conducting a clinical trial in which patients 

are treated with perifosine, which has been shown to inhibit 

a molecular pathway stimulating WM cell growth. The trial 

has seen some success with 25 patients being treated. While 

11 patients dropped out of the trial for various reasons, the 

14 patients remaining showed no sign of disease progression 

after two treatment cycles. Six of the 14 have shown a 

reduction in IgM levels. 

The IWMF gave Dr. Ghobrial a research grant for laboratory 

work to identify the pathways signaling to WM cells and to 

test various agents for disrupting those signaling pathways. 

Dr. Ghobrial’s group is in the process of testing combinations 

of perifosine, bortezomib and rituximab. 

Genetic Characteristics of Waldenstrom’s 

Macroglobulinemia - Dr. Linda Pilarski of the University 

of Alberta and the Cross Cancer Institute received an IWMF 

research grant to study the hypothesis that genetic factors 

related to the hyaluronan synthase (HAS1) cause people to 

contract various blood cancers. Her studies demonstrate that 

mutations of the HAS1 gene can cause WM or MM. Under 

the grant she is conducting detailed laboratory work to 

determine which mutations are associated with each disease. 

By testing people before they contract cancer and identifying 

the mutations of the HAS1 gene, Dr. Pilarski believes that 

predictions can be made regarding the type of cancer they 

will develop and how severe the effects will be. 

Comprehensive Studies Into the Genetic Basis and 

Pathogenesis of Waldenstrom’s Macroglobulinemia - Dr. 

Steven Treon’s group at the Bing Center for WM at Dana- 

Farber received a four-year research grant to study the genetic 

and molecular origin of WM. Three main areas of research 

are being funded by this grant. The first area examines 

possible genetic predispositions to WM. Studies aimed at 

characterizing the blood and cheek cells of both WM and 

healthy patients have reinforced previous findings that some 

ethnic characteristics (e.g. Ashkenazi) increase the risk of 

WM. In addition Dr. Treon’s group has demonstrated that 

in family members of WM patients there is a trend revealing 

significant irregularities in serum immunoglobulin and 

cholesterol levels. 

The Dana-Farber group also studied the sequences of various 

genes that could be involved in sending messages controlling 

WM cell growth and death. Finally, in collaboration with 

researchers from the University of Arkansas, gene expression 

profiling was also extensively used at Dana-Farber. By 

considering which genes were expressed and which 

suppressed, the group was able to separate WM patients from 

the normal population. WM patients were found to have a 

distinct molecular signature, the implications of which need 

further elucidation. 

Dr. Treon’s second project deals with alterations in the TACI/ 

TRAF signaling pathway and their ability to predispose 

a patient to WM and decreased levels of IgA and IgG. 

Mutations were found in TACI which correlated with lower 

levels of IgA and IgG. Additional studies are underway to 

expand these results by testing more patients, their extended 

families, and healthy donors. 

The third area of research attempts to determine the 

mechanisms which permit the expansion of cancer cells in 

the bone marrow of WM patients. The major finding of this 

work is that WM cells tend to secrete a soluble protein labeled 

sCD27 which is elevated above the level seen in healthy 

subjects. These cells were demonstrated to stimulate CD40L 

and APRIL, two factors that control growth and survival of 

WM cells. Additional work is required to substantiate these 

findings. 

PAGE 9

HELP LEAVE A LASTING 

LEGACY TO IWMF 

by Dave Lively and Dick Weiland 

At the mid-August IWMF board meeting in Chicago there was agreement among those board members present to consider 

a recognition society for all planned giving donors. Official action for this heritage society will be taken at our next board 

meeting after a special task force puts together some facts and figures, policies and procedures. 

One set of facts we need is a roster of all folks who have left a lasting legacy to IWMF already and of those who have 

arranged, or will have done so by April 1, 2008, to include IWMF in some aspect of their estate plan. These “founding 

members” would be recognized in a special way, probably at the 2008 Ed Forum. Each year thereafter new members would 

be introduced and recognized at such a special event. 

So, if you know of someone, or if you intend to include IWMF in some aspect of your own “planned” or “deferred” giving, 

such as a bequest, a gift annuity, a trust arrangement, an insurance policy, or a similar planned gift, please feel free to contact 

Dave Lively at livelyfish@aol.com or call him at (608) 783-4552. Or complete the Inquiry Form below and return it in the 

enclosed envelope with your membership dues, and Dave will get in touch. 

PAGE 10 

The following is a brief set of definitions of some of the options for easy admission to the IWMF lasting legacy program. 

A Bequest through your Will or a Codicil to your Will provides for a percentage of your estate, a fixed amount of money, 

or a specific item going to IWMF. 

A Charitable Remainder Trust provides income to the donor’s beneficiaries and the remainder to IWMF. Payments are 

determined annually and depend on the value of the trust assets as recalculated yearly. 

A Gift Annuity provides the donor with a contractual promise of fixed income each year. The payout rate depends upon the age of 

each beneficiary at the time the gift is made and when the payments begin. Payments can be deferred for several years. 

A Life Estate provides IWMF with a gift of residence or farm while allowing the donor the right to continue to live there 

for the remainder of his or her life. 

A Charitable Lead Trust provides IWMF with income for a term of years and leaves the remainder to the heirs of the benefactor. 

Life Insurance designations allow a charity to receive benefits upon the death of the insured. 

Be sure to see your attorney or tax adviser as you put your plans on paper. 

PLANNED GIFT/HERITAGE SOCIETY INQUIRY FORM 

I would like to support IWMF in one of the following ways. Please contact me about: 

❏ A Bequest in my Will or making a Codicil ❏ A Charitable Remainder Trust ❏ A Gift Annuity 

❏ A Life Estate or Real Estate Gift ❏ A Charitable Lead Trust ❏ Life Insurance 

❏ Other_ ____________________________________ 

___________________________________________________________________________________________________________ 

Signature 

Name (please print) 

___________________________________________________________________________________________________________ 

Address/City/State/Zip 

___________________________________________________________________________________________________________ 

Telephone Number 

E-mail Address

FROM IWMF-TALK 

by Mitch Orfuss 

Over the summer months the IWMF-Talk participants aired 

their views on many topics concerning treatment options 

and coping with the side effects of WM. Some of the livelier 

discussions are revisited below. 

Is there a “magic” PN drug?–Dianne Perry writes that 

Mayo Clinic’s web site recommends B-12 for PN. Guy 

Sherwood talked about four candidates for treating PN: 

L-glutamine (if taken before chemo); B-6 (with caution not 

to exceed 50 mg/day); lysine; and what Guy called the clear 

winner for him–morphine after Velcade a few years ago. 

Ann Tygart wrote about B-12: not just for PN but perhaps 

for memory problems as well, especially when taken in 

combo with other B vitamins. However, Liane Cochran- 

Stafira raised the possibility that B-6 actually makes PN 

worse. And Patti takes the supplements acetyl l-carnitine 

and alpha lipoic acid in search of better skin, only to learn 

that they are both good for PN. 

Shingles–Since WM patients are susceptible to Herpes 

zoster, commonly known as shingles, there is frequent 

discussion on IWMF Talk about this extremely unpleasant 

condition. Rob Selden wrote that though shingles is 

contagious only through direct contact with open lesions, 

such contact does not result in shingles—it causes chicken 

pox and does so only if the receiver never had chicken 

pox previously. Minnie Hattori sent several short notes 

to shingles newcomers describing the symptoms of this 

numbing, tingling, burning, itching, eruptive, blistering and 

in all ways relentless illness. Fay Langer emphasized that 

while shingles did not cause her pain, it did cause constant 

itching severe enough to keep her up at night. June Canter 

had another take on how sly shingles can be. When June 

came down with shingles during Rituxan treatment there 

was no rash at all—so no one immediately recognized 

her symptoms as a case of shingles. The result was that it 

became too late to make use of an antiviral, leaving June to 

three months of pain meds to help her get to sleep. Laure 

Van Kerkhove told a story of having shingles along with 

spinal encephalitis at age nine, causing pains in her side 

that she remembers nightmarishly almost four decades later. 

Sybil Whitman recounted having suffered from shingles 

four times, occurring both before and after her autologous 

SCT last year. After five rounds of chemo Gerri McDonald 

attempted to wean herself down to a half dose of the antiviral 

Famvir and, sure enough, it was weak enough to allow for 

a shingles outbreak. Once the outbreak had passed Gerri 

went back to the dose of Famvir which had originally been 

prescribed for prevention of shingles. There was also 

discussion on how long to keep taking a preventive antiviral 

after treatment, and our participants reported a range of 

directives from their physicians. 

Velcade, Leukeran, Campath–Ellen writes that though 

she experienced unpleasant side-effects from Velcade with 

cortisone–head and neck ache, sleeplessness, shortness of 

breath, and edema in the legs–her blood work did improve, 

with hemoglobin and WBC back to normal and a 50%- 

reduced monoclonal spike. Ron (The Hermit) Romeis, 

for a variety of reasons, elected a 13-month course of daily 

Leukeran (chlorambucil) in pill form starting in 2004, with 

very satisfactory results—but Ron mused on how difficult 

it is to know when sufficient treatment crosses over to too 

much. Frank Citrone, Jr., enjoyed a partial remission 

from Campath (with hydrocortisone) prior to a SCT. Guy 

Sherwood wrote that he had a result similar to Frank’s 

except that he had Velcade after Campath at Dana-Farber 

before his successful auto transplant. Mike writes that he 

was diagnosed at 32 and had Campath as a first treatment 

with mixed results: a seven-month partial remission but a 

knocked-back immune system. 

About Rituxan–After Peter DeNardis referenced an article 

about fast-infusion of Rituxan, many replies and comments 

were received on IWMF Talk. Corinne wrote that she is 

given her Rituxan infusions very slowly. During treatment 

she tends to get an itchy head and a puffy, red face, and she 

has trouble breathing with a heavy feeling in her chest—plus 

“restless leg” from the Benadryl. She actually starts taking 

prednisone, Benadryl and Zantac the day before treatment. 

Her infusion crew adds Atavan to the IV cocktail along with 

the Benadryl, and Corinne sleeps for the entire 12 hours. 

Maria writes that she didn’t have side effects after the 

treatment—just during. Her blood pressure would drop to 

a dangerous level. She could not sit still–it felt like “being 

plugged in to a wall socket.” So Maria went to the hospital, 

the staff infused her over a 24 hour period, and the problems 

evaporated. 

From IWMF-Talk, cont on page 14 

PAGE 11 

How to join the IWMF-TALK 

Here are two ways to join: 

1. Send a blank e-mail to: iwmf-talk-subscribe-request@lists.psu.edu 

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 iwmf-talk@lists.psu.edu 

2. Contact Peter DeNardis at pdenardis@comcast.net and provide your full name

PAGE 12 

ALABAMA 

Mal Roseman 

770-392-1255 

malroseman@comcast.net 

Ann Gray 

501-915-0825 

anngray1@suddenlink.net 

ARIZONA 

Phoenix 

Ed Nadel 

480-502-5045 

EnadeL63@aol.com 

Tucson 

Jackie Smith 

Winter-520-299-5470 

Summer-605-717-2862 

(Nov. 1 – Apr. 1) 

ARKANSAS 

Eastern 

Bill Paul 

901-767-6630 

biLLpauL1@juno.com 

Western 

(area not currently served by 

support group) 

General Contact: 

Ann Gray 

501-915-0825 


CALIFORNIA 

Los Angeles 

Kathie Coen 

310-454-7127 

kdcoen@roadrunner.com 

Orange County 

Emil Parente 

949-388-9666 

pnepar@cox.net 

Marty Glassman 

949-951-6903 

mglassman@cox.net 

Sacramento 

Cynthia Nicholson 

916-852-6012 

nicholson26@comcast.net 

Santa Barbara 

Ceci Menchen 

805-687-1736 

cici@menchen.sbcoxmail.com 

San Francisco 

Penni Wisner 

415-552-6579 

penniw@pacbell.net 

IWMF SUPPORT GROUP CHAPTER LISTINGS 

COLORADO 

Bill Bass 

303-753-4006 

wmbass@ix.netcom.com 

Cindy Furst 

970-667-5343 

cindyfurst@msn.com 

CONNECTICUT 

Francoise Lampe 

203-431-1455 

wmfgL@sbcglobal.net 

Bob Hammond 

203-426-2772 

Rhamm17@aol.com 

Linda Mc Intosh 

860-460-6445 

lynmac47@aol.com 

DELAWARE 


717-845-5937 

karenpindzola@yahoo.com 

FLORIDA 

Treasure Coast 

Gail Murdough 

772-564-9910 

Golphin1@comcast.net 

Ft. Lauderdale Area 

Charlie Koch 

954-476-8726 

Bonnie143@bellsouth.net 

Tallahassee 

Doris Mathis 

850-545-5529 

dmathis521@aol.com 

West Coast 

Herb Kallman 

239-466-6911 

margerina@aol.com 

Tampa 

Linda Rothenberg 

352-688-0316 

A1pets@tampabay.rr.com 

GEORGIA 

Atlanta 

Mal & Judy Roseman 

770-392-1255 

malroseman@comcast.net 

HAWAII 

(Nov – Apr) 

Sandy Skillicorn 

808-891-2882 

jLsLs@aol.com 

IDAHO 

Eastern 

John Stanger 

208-529-4462 

johns@dolefresh.com 

Barbara Britschgi 

208-522-2130 

cbrits@cableone.net 

Northern 

Judy Clark 

208-888-0346 

jzclark@cableone.net 

ILLINOIS 

Chicago 

Don Brown 

630-323-5894 

Ldonbrown@msn.com 

INDIANA 

Ron Payne 

937-349-4344 

revrpayne@embarqmail.com 

Marion Petry 

937-438-8850 

mLpetry123@earthlink.net 

KENTUCKY 

Northern KY 

Ron Payne 

937-349-4344 


Marion Petry 

937-438-8850 


LOUISIANA 



Regional Contact: 

Ann Gray 

501-915-0825 


MARYLAND 

Catherine Naylor 

301-229-0319 

catherinenaylor@verizon.net 

MASSACHUSETTS 

Boston 

Lynne & Joe Mara 

781-749-0204 

jmara@nordicgroupusa.com 

MASSACHUSETTS 

Judy Christensen 

781-335-5698 

MICHIGAN 

Peter & Barbra Boyse 

989-415-9936 

peterdboyse@earthlink.net 

baboyse@earthlink.net 

MINNESOTA 

Minneapolis/St. Paul 

Michelle Blazek 

651-730-0061 

mandsblazek@comcast.net 

MISSISSIPPI 

Bill Paul 

901-767-6630 


Ann Gray 

501-915-0825 


MISSOURI 

Nancy Gerhardy 

417-889-2461 

Gerhardy2000@yahoo.com 

MONTANA 

John Stanger 

208-529-4462 

johns@dolefresh.com 

Barbara Britschgi 

208-522-2130 

cbrits@cableone.net 

Cindy Furst 

970-667-5343 


NEBRASKA 




Cindy Furst 970-667-5343 


NEVADA 

Eastern 

Gerri McDonald 

804-484-0360 

gerri-sLc@comcast.net 

NEW ENGLAND 

Boston 

Lynne & Joe Mara 

781-749-0204 

jmara@nordicgroupusa.com 

Judy Christensen 

781-335-5698

NEW ENGLAND (cont.) 

Western MA, VT & CT 

Mel Horowitz 

518-449-8817 

wmcure@yahoo.com 

PENNSYLVANIA 

Philadelphia 


717-845-5937 

karenpindzola@yahoo.com 

UTAH 

Gerri McDonald 

801-484-0360 

or 801-232-5811 

gerri-sLc@comcast.net 

CANADA (cont.) 

Alberta 

Stu Boland 

403-281-0271 

Stu_boland@hotmail.com 

NEW MEXICO 

Bill Bilbro 

505-642-4987 

wbilbro@gmail.com 

NEW YORK 

Albany 

Mel Horowitz 

518-449-8817 

wmcure@yahoo.com 

New York City 

Neil Massoth 

201-444-6253 

nmassoth@aol.com 

Rochester, Central & Western 

Gail Burgie 

585-248-3609 

ghburgie@mymailstation.com 

NORTH CAROLINA 

David Hibbs 

919-563-3852 

dhibbs1@triad.rr.com 

Bob Zehner 

804-796-3571 

bobnbetsz@comcast.net 

NORTH DAKOTA 




Cindy Furst 

970-667-5343 

Cindyfurst@msn.com 

EASTERN OHIO 

Shariann Hall 

330-533-4921 

shari19@juno.com 

Marcia Klepac 

412-421-2437 

marciaklep@hotmail.com 

WESTERN OH, E. IN 

Ron Payne 

937-349-4344 


Marion Petry 

937-438-8850 


OREGON 

Joan Berglund 

503-668-5037 

rjbergie@verizon.net 

Harrisburg 

Terrie Eshleman 

717-665-7393 

tmeshleman@paonline.com 

W. PENN, E. OH, WV 

Shariann Hall 

330-533-4921 

shari19@juno.com 

Marcia Klepac 

412-421-2437 

marciaklep@hotmail.com 

RHODE ISLAND 

Linda Mc Intosh 

860-460-6445 

lynmac47@aol.com 

SOUTH CAROLINA 

John & Paula Austin 

803-644-6002 

jhaustin@bellsouth.net 

SOUTH DAKOTA 



Regional Contact 

Cindy Furst 

970-667-5343 Cindyfurst@ 

msn.com 

TENNESSEE 

Central & Western 

Bill Paul 

901-767-6630 





Myrna Daniel 

706-539-2866 

mdmermer@yahoo.com 

TEXAS 

Dallas 

Jerry Fleming 

972-867-5102 

NTWMSG@verizon.net 

Houston 

Barbara & John Manousso 

713-840-0828 

manousso@hal-pc.org 

Western 

Bill Bilbro 

505-642-4987 

wbilbro@gmail.com 

VIRGINIA 

David Hibbs 

919-563-3852 

dhibbs1@triad.rr.com 

Bob Zehner 

804-796-3571 

bobnbetsz@comcast.net 

WASHINGTON 

Peg Horton 

253-874-8820 

Peggy.horton@comcast.net 

WASHINGTON D.C., 

NORTHERN VA 

Catherine Naylor 

301-229-0319 

catherinenaylor@verizon.net 

WISCONSIN 

Dan Lotts 

920-295-3018 

danltts@aol.com 

Fon Du Lac 

Cheryl Callahan 

920-921-4854 

chercal@charter.net 

Western WI 

Michelle Blazek 

651-730-0061 

mandsblazek@aol.com 

WYOMING 

Roy Parker 

303-470-6699 

roypar@comcast.net 

Bill Bass 

303-753-4006 

wmbass@ix.netcom.com 

Cindy Furst 

970-667-5343 


INTERNATIONAL 

AUSTRALIA 

Gareth Evans 

WMozzies-owner@ 

yahoogroups.com 

CANADA 

Alberta 

Cam Fraser 

403-281-8278 

cmfraser@shaw.ca 

Halifax 

Susan Gagnon 

902-446-9533 

sgagnon@eastlink.ca 

Montreal 

Sandra Proctor 

450-672-4336 

sandra.proctor@sympatico.ca 

Ottawa 

Terry Cherry 

613-596-1413 

terry@tccherry.com 

Toronto 

Arlene Hinchcliffe 

905-337-2455 

wmfc@noco.ca 

Vancouver 

Charlene Kornaga 

604-487-1100 

dennischarlene.kornaga@ 

shaw.ca 

FINLAND 

Veikko Hoikkala 

+35 8500 48 4864 

veikko.hoikkala@ 

finnforest.com 

UNITED KINGDOM 

Nigel Pardoe & Cheryl 

Luckie 

+44 020 8579 8120 

info@septemberservices.com 

Sussex 

Mike Dewhirst 

+44 1323 841735 

mkdewhirst@yahoo.co.uk 

Birmingham & West 

Midlands 

Geoffrey Willsher 

+44 0121429 1038 

willsher.s@btinternet.com 

INDIA (area not currently 

served by support group) 


Sanjeev Kharwadkar 

swkharwadkar@yahoo.co.in 

PAGE 13

PAGE 14 

From IWMF-Talk, cont from page 11 

Betty McPhee writes regarding the phenomenon of 

Rituxan flare to remind us that not everyone experiences 

it. Guy Sherwood says that many oncologists recommend 

plasmapheresis before Rituxan therapy when IgM reaches a 

certain level, though this level varies by doctor. Matt raised 

the issue of one downside to a great treatment result: after a 

course of fludarabine and Rituxan no less than eight years 

ago that brought his hemoglobin and IgM all the way back 

to normal levels, Matt’s IgG worsened with every blood 

work report. Could the combo treatment have caused that 

negative despite the positive results with other important 

blood readings? Should Matt seek the fludarabine/Rituxan 

combo treatment again if it becomes time to treat? 

Jeff Atlin writes about Velcade and Rituxan in combo, 

referencing a Phase-II trial in which the amount of Velcade was 

halved. The result: excellent response—and fortunately without 

the PN previously associated with higher dose Velcade. 

Another thread of Talk that sparked interest concerned a 

rapid-infusion test of Rituxan. The standard infusion rate 

for Rituxan, established empirically taking potential adverse 

reactions into account, is slow, ranging between 4-7 hours. 

But, as recently reported, 1200 patients in British Columbia 

tolerated Rituxan delivered by a severely compressed 

infusion schedule in which 20% of the total drug was infused 

in the first 30 minutes and the remaining 80% in the next 

60 minutes. What a potential improvement in resource 

utilization! Betty McPhee said that she had recently had a 

rapid infusion of Rituxan without problem. 

Finally, there continues to be considerable passionate 

discussion on IWMF Talk about the many unknowns 

concerning maintenance Rituxan. Bob Bent, Ron Draftz, 

Dave Johnston, Dr. Tom Hoffmann, and this writer, among 

many others, weighed in with a wide array of thoughts and 

speculations. Though the evidence does not now exist to 

show that maintenance-R is or is not a treatment approach 

superior to Rituxan-As-Needed, this topic continues to 

excite the imaginations of the readers of Talk as much as, 

if not more than, any other topic that pops up. There have 

been many reports from patients who say they were, or are, 

on maintenance-R schedules, with spirited responses from 

others. Perhaps Guy Sherwood has the last word-–for now, 

anyway!–with a reminder from the scientists working so 

hard for us. A panel of experts at the recent 4th International 

Workshop on WM on Kos Island, Greece, addressed the issue 

of maintenance Rituxan, and there was a virtually unanimous 

decision that the recommendation in favor of maintenance 

(every 3 months for 2 years or similar protocol) could not 

be made at this time because of lack of data. By the time 

the next International Workshop on WM is held in two years, 

Guy expects that sufficient data will be available to make a 

confident, fact-based recommendation, be it for or against 

maintenance Rituxan. In the meantime, we can expect this 

topic to continue to surface again and again. 

SUPPORT GROUP NEWS 

edited by Penni Wisner 

New support groups continue to blossom and expand. 

Here in California, in the south, a new group formed, and 

the Orange County group is very active. One of the most 

exciting developments for groups has been the visits of 

Drs. Irene Ghobrial and Steven Treon, both of Dana-Farber 

Cancer Institute. Their cutting edge research and clinical 

expertise is very much on display in their presentations at 

these small (compared to the annual IWMF Educational 

Forum), meetings. And summer appears to be a social 

season for support groups as many host annual barbecues 

and picnics. A recent post to IWMF-Talk concerned research 

into what patients wanted from support groups. Run by and 

for WM patients and their families and friends, they reflect 

our unique concerns. Read on to discover what the groups 

in your area are discussing. 

CALIFORNIA 

Los Angeles 

Katie Coen organized the Los Angeles support group which 

met for the first time in July. They had a good turnout and 

plan to continue to meet regularly. Occasionally, the group 

will join with its neighbor in Orange County for programs 

such as the October 6 presentation of Dr. Irene Ghobrial. 

Orange County 

Marty Glassman, co-leader of the Southern CA support 

group, organized the October 6 meeting featuring Dr. Irene 

Ghobrial at the Hoag Cancer Center in Newport Beach. 

Sacramento and Bay Area 

Does it count as a meeting when two members meet? Talk 

on the telephone? Perhaps the most important—and most 

enjoyable—role of support group facilitators is that of “first 

responder.” Newly diagnosed patients find the name of the 

local group leader on the web and call or email. Hopefully, 

after that initial call, patients can more easily navigate the 

often confusing path before them. At first some patients are 

reluctant to attend a meeting: they are afraid a room full of 

WMers will be a room full of sick people. Or they just do not 

want to think about their disease. But then, gathering their 

courage, they show up. And discover homemade cookies and 

a caring group of active, intelligent, curious, dedicated peers. 

And from these, they can learn what lies ahead after diagnosis, 

the subject of the group’s fall meeting October 14. 

COLORADO & WYOMING 

The Colorado-Wyoming support group (also known as 

the Rocky Mountain support group) enjoyed a wonderful 

presentation in September by Dr. Irene Ghobrial. She spoke 

to a joint meeting of the IWMF group and the local chapter 

of the Leukemia & Lymphoma Society. The winter meeting 

will feature Dr. Steven Treon on February 9. 

Support Group News, cont on page 15

Support Group News, cont from page 14 

FLORIDA 

South Florida 

Dr. Daren Grosman fielded questions in an “Ask the Doctor” 

format for the summer gathering of the South Florida IWMF 

support group. Each patient was able to discuss his or her 

status and treatment. Dr. Grosman discussed the various 

options available to patients including when to start with 

Rituxan, Rituxan maintenance, use of Velcade, identifying 

the monoclonal spike, peripheral neuropathy, plasmapheresis, 

and treatment side effects. Handouts of the new IWMF 

publications were also provided. The next meeting is being 

planned for early December and the hope is to have another 

guest speaker. 

GEORGIA 

The Georgia and South Carolina support groups will meet 

on Saturday, October 20, to hear the latest from Dr. Steven 

Treon. Anyone who would like to attend, please contact Mal 

Roseman by email. 

IDAHO 

The Eastern Idaho support group is quite small with just four 

patients and four caregivers. We welcome all WM patients 

in the Snake River Valley as well as patients in Western 

Wyoming and Southern Montana. Despite thin population 

density and great distance, in June the group held its third 

annual barbecue at a member’s home. Proving that “the third 

time’s a charm,” it did not rain. We traded WM-educational 

DVD’s from our group library. A new addition this year is 

the “Weeds in the Garden” DVD by the Mayo Clinic’s Dr. 

Morie Gertz. In August the group met informally for lunch 

at a local restaurant. Since three out of the four patients are 

in treatment, the group feels it is important to meet, or at 

least communicate by telephone/email, as often as possible. 

The next meeting will be during the holiday season. We 

continue to reach out via IWMF-Talk and the Torch as well 

as through the local newspaper and with notices placed at 

cancer centers and oncology offices in our area. 

MINNESOTA & WESTERN WISCONSIN 

Plenty of laughter, feasting, playing games, and getting to 

know one another better were the featured menu items for 

the Minnesota/Western Wisconsin support group’s first 

annual summer picnic. Sixteen members frolicked through 

the lovely afternoon. A nutritionist spoke at the group’s 

September meeting. 

SUPPORT GROUP LEADERS 

TALK LIST 

This list is only for support group leaders to use in 

communicating with each other about support group 

issues. It is used by the leaders to share their experiences 

and ideas for facilitating our IWMF support groups. 

Please email Support Group Coordinator, Karen 

Pindzola at kpindzola@yahoo.com if you would like to 

participate. 

NEW YORK 

Rochester, Western and Central NY 

In July the group enjoyed a good turnout and lots of great 

conversation and food at the annual summer picnic. Pam 

and Frank Fox-Ferro were perfect hosts. Usually meetings 

are held at the Albany Medical Center where the free parking 

is greatly appreciated. At the September meeting the group 

was particularly excited about the upcoming October 13th 

Regional Lymphoma Research Foundation (LRF) Ed Forum 

in Brooklyn, at which Drs. Ghobrial, Coleman, and Nichols 

will give presentations during the WM sessions. The support 

group meets next on November 17. 

OREGON/SOUTHWEST WASHINGTON 

The Oregon and Southwest Washington WM support group 

meets quarterly. At this summer’s meeting two members and 

their spouses who had attended the IWMF patient education 

forum in Atlanta shared their impressions. Following their 

presentation, the group broke into two small groups (patients 

and caregivers) for sharing and Q&A. The patient group was 

moderated by IWMF support group leader Joan Berglund, 

RN, MSN. The caregiver group, including spouses and 

friends, was moderated by Sue Sumpter, RN, MS, Patient 

Services Manager, The Leukemia & Lymphoma Society, 

Oregon and S.W. Washington Chapter. The feedback from 

this meeting, our fourth, indicated that it was one of the best 

so far. Attendees felt they learned from the presenters and 

also had an opportunity to get better acquainted in the small 

groups. They were able to ask questions and learn from each 

other and to get ideas by group brainstorming. The group 

plans to meet the 4th Saturday of every third month (January, 

April, July and October). Our next meeting will be October 

27. This is a change from the previously published date. The 

January meeting will be postponed until February 2. 

PENNSYLVANIA 

Philadelphia 

Sixteen Philadelphia-area folks and Heidi, the Pindzolas’ 

white dog, met in August at the Bryn Mawr Hospital for a 

wonderful session of sharing and discussion. We covered 

people’s experiences with many of the current treatments, 

various symptoms and how they were handled, and a couple 

of more serious problems that were perhaps in need of a 

second opinion. In addition, the group discussed the whys 

of support group attendance and came up with quite a little 

list including: 

1. Feels good to see old friends and keep up with WM 

acquaintances. 

2. Hearing firsthand experiences of symptoms and treatments 

is very educational. The group decided it is particularly 

encouraging to hear about people who are doing well. 

3. Gathering feedback for managing new symptoms. 

Support Group News, cont on page 16 

PAGE 15

PAGE 16 

Support Group News, cont from page 15 

The group is fortunate to have a good joke teller (not the 

dog) and good snack providers, Jim and Betty Orteleva. 

The next meeting will be the second Sunday of November 

(instead of October): 2 pm Sunday, November 11. 

SOUTH CAROLINA 

The South Carolina WM support group will join with 

the Georgia support group on Saturday, October 20, for a 

joint meeting in Atlanta, where we are fortunate to have 

Dr. Stephen Treon of Dana-Farber joining us to provide an 

update on the latest advancements in WM treatment. Please 

contact the SC support group coordinators, John and Paula 

Austin, if you would like to attend. 

TEXAS 

Dallas & Northern Texas 

The North Texas support group is enjoying a new relationship 

with several other organizations. In May we co-sponsored a 

meeting with the Leukemia & Lymphoma Society hosting 

Marvin Stone, MD, Chief of Oncology at Baylor University 

Medical Center in Dallas and Steven P. Treon, MD, Program 

Director, the Bing Center for Waldenstrom’s Research, Dana- 

Farber Cancer Institute. In September the group participated 

in the Lone Star Blood Cancer Conference sponsored by the 

LLS at the University of Texas Southwestern Medical Center 

in Dallas. During the break-out session time, the group had 

its September meeting. On Saturday, November 17 at 10:30 

am the group will host Dr. Ghobrial, Instructor of Medicine, 

Dana-Farber Cancer Institute. She will speak on “Novel 

Therapeutic Options for Waldenstrom’s Macroglobulinemia” 

at the Baylor University Medical Center. The meeting will 

be co-sponsored by the LLS of North Texas and the Baylor 

Charles A. Sammons Cancer Center at Dallas, Baylor 

University Medical Center. 

Houston 

Drawing on local expertise, the Houston support group had 

a wonderful program with M.D. Anderson’s Dr. Sheeba 

Thomas on a Sunday in August. Dr. Thomas gave a very 

informative overview on the molecular basis of WM. The 

group proclaims her a most welcome addition to the cadre 

of caring WM expert doctors. On Sunday, November 11, 

at 3 pm Houston will have their meeting with guest speaker 

Dr. Ghobrial. This program will again be coordinated with 

the LLS. The location will be at the home of group leaders, 

Barbara and John Manousso. RSVP by November 9. 

VIRGINIA 

Central Virginia 

Bob Zehner hosted a cookout in August for the Central 

Virginia support group at his home in Chesterfield. Attendees 

arrived from Virginia Beach, Middlesex, Portsmouth, and 

the Richmond area. Three members of the group are, or 

have been in, clinical trials, and the rest were eager to hear 

about personal experiences in the trials. Member Arno 

Muller shared some of the things he learned at the IWMF 

Atlanta forum. 

THE LIFELINE 

If you can’t get to a local support meeting, use our IWMF 

Telephone Lifeline to call a WM veteran. 

The lifeline is seeking volunteers who speak a language 

other than English. If you would like to volunteer, please 

contact the IWMF business office at 941-927-4963 or 

info@iwmf.com. 

2-CdA 

Norm Spector 858-454-6313 

2-CdA WITH RITUXAN 

Bernard Swichkow 305-670-1984 

CAREGIVING 

Lynn Bickle 805-492-4927 

Brad Alexander 972-529-2002 

CHLORAMBUCIL 

Dave Lively 608-783-4552 

Ronald Romeis 610-724-3481 

Jerry Berman 416-925-6715 

CLINICAL TRIALS 

Tom Hoffmann 501-868-8305 

Guy Sherwood 765-282-4377 

CRYOGLOBULINEMIA 

Fay Langer 973-464-6696 

FLUDARABINE 

Peg Horton 253-874-8820 

Dave Lively 608-783-4552 

FLUDARABINE with Rituxan 

Marty Kopin 310-390-1546 

Jerry Block 301-460-9799 

LATEST RESEARCH 

Bert Visheau 905-528-1789 

NEWLY DIAGNOSED 

Guy Sherwood 765-282-4377 

Norm Spector 858-454-6313 

Sallie Moore 516-795-3746 

ORAL CYTOXAN 

Lou Birenbaum 314-961-5591 

PLASMAPHERESIS 

Fred Bickle 805-492-4927 

Arlou Brahm 203-264-7995 

RITUXAN 

Charles Vassallo 201-947-6977 

James Townsend 352-376-3664 

Allen Weinert 603-863-5347 

760-568-2918

SOCIAL SECURITY DISABILITY 

Howard Prestwich 815-233-0915 

SPLENECTOMY 

Kathleen Ugenti 631-470-0971 

STEM CELL TRANSPLANT 

Howard Donley 307-587-3397 

Davell Hays 530-295-1344 

Sybil Whitman 506-450-3970 

THALIDOMIDE 

Mel Horowitz 518-449-8817 

VELCADE 

Jeff Atlin 905-731-7756 

VETERANS 

Jerry Fleming 972-867-5102 

WATCH AND WAIT 

Mel Horowitz 518-449-8817 

Renee Paley-Bain 203-744-7851 

Polly Oldberg 513-932-7486 

YOUNG WM 

Nobby Riedy 650-879-9104 

Bob Bailey 770-664-8213 

Betty Mc Phee 905-775-3413 

HEARING IMPAIRED TTY FACILITY 

SWEDEN/NORWAY 

Anne Odmark 46 018-14 05 13 

anneodmark@privat.utfors.se 

GERMAN SPEAKER 

Roy Parker (Colorado, USA) 

303-470-6699 

Rnvp38@hotmail.com 

Sybil Whitman (New Brunswick, CANADA) 

506-450-3970 

hcouture@nbnet.nb.ca 

DUTCH SPEAKER 

Lia van Ginneken-Noordman 

Ginneken.noordman@wxs.nl 

SPANISH SPEAKER 

Peter Mitro 

440-247-3460 

stonehill@earthlink.net 

Betsy Beazley 

510-527-5827 

betsybeazley@gmail.com 

SPANISH SPEAKER (cont.) 

Gladys Mendieta 

215-860-9216 

Gladysmendieta@aol.com 

FRENCH SPEAKER 

Guy Sherwood 

765-282-4377 

guysherwood@comcast.net 

Sybil Whitman (New Brunswick, CANADA 

506-450-3970 

hcouture@nbnet.nb.ca 

UNITED KINGDOM LIFELINE 

2Cda 

Roger Brown +44 01285 650107 

roger@bookworm.uk.com 

CHLORAMBUCIL 

John Povall +44 1606 833022 

jpovall@mmm.com 

FLUDARABINE 

Ken Rideout +44 1278 782108 

ken@4rosetree.fs.co.uk 

FLUDARABINE AND CYCLOPHOSPHAMIDE 

John Povall +44 1606 833022 

jpovall@mmm.com 

FLUDARABINE AND RITUXIMAB 

Mike Dewhirst +44 1323 841735 

dewhirst_6@hotmail.com 

OPTHALMOLOGY 

Terry Betts +44 01992 583643 

tjb-planning@freeuk.com 

PLASMAPHERESIS 

Roger Brown +44 1285 650107 

roger@bookworm.uk.com 

RITUXAN 

Nigel Pardoe +44 0208 326 3270 

pardoe@aol.com 

UK WEBSITE/CHAT ROOM 

Raphael Altman 

arty@aranti.freeserve.co.uk 

PAGE 17

PAGE 18 

Since June, 2007 the 

following contributions 

to the International 

 

Waldenstrom’s 

Macroglobulinemia 

 

Foundation were made in 

memory of: 

In memory of Martin Baer: 

Jess & Lauri Rosenthal 

 

In memory of Michael Baranski: 

Delores Baranski 

Sam & Lindsay Moucha 

In memory of Evelyn Beattie: 

Angelo & Mary Jane Hernandez 

Frank & Carol Rockwell 

In memory of Paula Myra Boelts: 

Kerry, Denise & Jim Armstrong 

Leo & Yoli Bounds 

Dennis & Diane Giuliano 

John & Judy Giuliano 

Tom, Nina and Bruce Giuliano 

Jim & Doris Pool 

In memory of Bob Botwen: 

Noah & Phyllis Fields 

In memory of Kay Bruce: 

Sam & Doris Mathis 

In memory of Robert G. Bryans: 

Richard & Barbara Bonnardel 

In memory of Bud & Edna Carpenter: 

Ed & Idalee Carpenter 

In memory of Sophie Clemenza: 


In memory of Lucille Dettore: 

Don & Lillian Colavecchio 

In memory of Jay Fitts: 

Edith Haffner Fitts 

 

In memory of Sally Frankel: 

Dassault Systemes Americas Corp. 

In memory of Manny Friedman: 

Esther Mann & Family 

In memory of Irene Hagland: 

Patricia Massett 

In memory of Lucille Harris: 

Sam & Doris Mathis 

In memory of Bernice Katz: 


Herb & Judy Fuchs 

In memory of Raymond Kuehn: 

Roberta Kuehn 

In memory of John Lane, Jr.: 

Caroline Herr 

Lauren Wendel 

Mary Wendel 

Steven Wendel 

Whitney Wendel 

In memory of Michael Lesmister: 

Gay Lesmister 

In memory of Lillian Lillemoe: 

Alden & Doris Halloran 

In memory of Lachlan Macphail: 

Friends & Colleagues at StreetForce 

In memory of Catherine Mc Gee: 

L. Allan 

Gini Bethell 

Big Brothers & Sisters Board of 

Directors 

Monique Brazeau 

James Carroll & Family 

Eleanor Chase 

Terry & Janet Cherry 

Eloise Colson 

William Henneker 

David Hoodspith 

Jan & Frank Jones 

Rosemarie Komm 

Pauline Levean 

Darquise Moore 

David & Marie Norlock 

Chantal Sayde 

 

In memory of Jerold R. Peterson: 

Ruth Kinka Beile 

Paul & Gloria Carter 

Check ‘n Go 

Kenneth & Jane Cihon 

Clingen, Callow & McLean, LLC 

The Dorr, Sullivan & Fleming 

Families 

Donald & Hildegarde Duval 

Al & Carolyn Fulton 

Jack & Lorraine Kull 

Warren & Helen Petersen 

Corinne Schaer 

Patricia Wadsworth 

Dick & Janice Wilson 

Craig & Jan Zaleski 

 

In memory of Peter G. Pfendler: 

Peter Hardin & Karen MacPherson 

Tom, Barbara & Amy Pfendler 

In memory of Neil Rehrer: 

Bruce & Joann Binkley 

Lawrence & Arelene Marsh 

In memory of Alfred Sfreddo: 

Michael & Jo-Ann Killeen 

Donald Sfreddo 

In memory of Russell F. Smith: 

Ed & Idalee Carpenter 

Helen Cernauskas 

Robert & Carol Dawson 

Sue Eichhurst 

A. Hinz 

Joanne Hughes 

Sue Iona 

Arlene Kucaba 

Mr. & Mrs. Dean Lindemann 

Mr. & Mrs. Ed Mazurowski 

Mr. & Mrs. Rich Morrow 

Mr. & Mrs. Charles Plasil 

Betty M. Prochazka 

Mr. & Mrs. Donald Sikorski 

Dorothy Smith 

In memory of Jenni Stone: 

Jerry M. Fleming 

In memory of Mari Ellen Stoddard: 

Judith Workman 

In memory of Paula Sweeney: 

Peyton & Emily McLamb 

In memory of Diane Taylor: 

Ruth A. Bourdelais 

David & Joanne Cross 

Janet Delani 

Beverly & Lester Hall 

High Plain Elementary School 

Sunshine Fund 

Bente Lupion 

John & Delcie Myatt 

Ann Tarr 

In memory of Edward Wubbins: 

Bob & Sue Morris 

In memory of Harold Zfaney: 

Jeff Baer 

Jim & Peggy Belmonti 

Ben & Joan Bishaf 

Marvin & Gail Boehm 

Joel Fenchel, Fischel & Kahn 

Sergio & Edna Garcia 

Scott & Lori Goldberg 

Susan Gradman & Jeff Gourdji

In memory of Harold Zfaney (cont.): 

Nancy Kohn 

Gerald Leeb 

Max & Sondra Lorig 

Colleen Lowmiller 

Joseph & Phyllis Meltzer 

John & Frances Moore 

The Nadig Family 

Sy & Miffie Nagorsky 

Richard & Marsha Newman 

Jonathan Paluga 

Robbie & Bunny Polovin 

Michelle Prettyman 

Fred & Brenda Turner 

Leslie & Jo Turner 

Mark & Barbara Turner 

Robert Wagman 

Since June, 2007 

the 

following contributions 

to the International 

Waldenstrom’s 

Macroglobulinemia 

Foundation were made in 

honor of: 

In honor of Dr. Ashraf Badros: 

The Washington DC Area Support 

Group 

In honor of Fred & Lynn Bickle: 

Cars 4 Cash Charity 

In honor of Ross A. Bielenberg: 

Mark, Julie & Kaitlyn Sintkowski 

In honor of Erna Brout: 

Marcia Heisler 

In honor of the wedding of Melissa 

Brown to Aaron Tieman and in honor 

of Donald Brown, Father of the Bride: 

Rev. & Mrs. Ralph E. Robrahn 

In honor of Jim & Barb Bunton: 

Jack & Joan Hill 

John Wilson 

 

In honor of Susan Burns: 

Avon Products 

In honor of Joy Dulin: 

Michael & Jan Dulin 

In honor of Jeffrey Eickhoff: 

Carolyn Moser 

Bob & Tara Vincent 

 

In honor of Jerry Fleming: 

John & Marie McCann 

In honor of Dr. Irene Ghobrial’s 

research: 

San Francisco Bay Area Support 

Group 

In honor of Dave Heiser: 

D. Neil & Maddie Gissler & Family 

In honor of Leslie Herzog & Steven 

Blum: 

Warren & Holly Rosencranz & Gang 

In honor of Helena Hollitscher: 

Pete Hollitscher 

In honor of Bill Howanski: 

Kristine Howanski 

In honor of Elinor Howenstine: 

Thomas C. Howenstine 

Monte Robison 

In honor of Catherine James and the 

Wedding Day of Jimmy & Tricia 

Wells: 

The Borchardt Family 

In honor of Mrs. Brent S. James: 

Jim & Sheila Denes 

In honor of Cyrus Karper: 

Betsy, John, Jonah & Maggie Brais 

 

In honor of Dr. David B. Kirby: 

Nancy Fisher 

In honor of Steve Kirsch: 

Robert, Sara & Elsie Benjamin 

In honor of Dave Lively: 

Minnesota-Wisconsin Support Group 

In honor of Catherine Mc Clounan: 

Elizabeth Rudolph 

In honor of Sheila & Everett McGinn: 

Colleen & Brian O’Neill 

In honor of E. Lynn Overboe: 

Edwin & Helen Overboe through 

the Fargo-Moorhead Area 

Foundation 

In honor of Karen Pindzola: 

Marcia Bosswick 

In honor of Alice Riginos: 

Gus & Linda Swift 

In honor of Ada Royce: 

Lloyd & Mary Elizabeth Josie 

In honor of Jeffrey & Susan 

Rubenstein: 

John & Christina Hatherly 

In honor of David Smith: 

William & Marjorie Foss 

In honor of Peter Steel and The Mills 

& Reeve Coast to Coast Cycle Ride: 

Rachel Birks 

Linda Cusack 

James Hiscock 

Matthew Pearce 

Neil Sleat 

Jonathan Smart 

In honor of the wedding of Aaron & 

Melissa Tieman: 

Don & Mary Brown 

In honor of Dr. Steven Treon: 

Anita Nelson 

In honor of Charles Vassallo’s 60 th 

Birthday: 

Linda Bohdan 

Michael Burke 

Joan Cioffi 

Brad & Serina Dansker 

Charles & Maryann DiMaggio 

Joseph & Ann Grippo 

William & Maria Grohskopf 

Maria Hellen 

Christopher Kearns 

Vittoria Massari 

Mark & Christina Nissen 

Norma Pallares 

Mark Petrone 

Paul & Mary Petrone 

Eric & Eileen Plasa 

Anna-Maria Rothenberg 

Bill & Janet Ulbrich 

Vincent & Rosemary Vassallo 

 

In honor of Ubaldo Vitali: 

The Family of Michael Arace 

Bruce & Judy Bernbaum 

Jennifer Bernbaum 

Celeste & Phyllis Fasone 

Val & Yolanda Iacovantuno 

Timothy & Gina Monahan 

John & Diane Vantuno 

Ralph & Nicole Wagner 

PAGE 19

Non Profit Org 

US Postage 

PAID 

Manasota, FL 

Permit No. 133 

International Waldenstrom’s 

Macroglobulinemia Foundation 

3932D Swift Road 

Sarasota, FL 34231-6541 

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

E-mail: info@iwmf.com. • www.iwmf.com 

IWMF is a 501(c)(3) tax exempt non-profit organization 

Fed ID #54-1784426 

PAGE 20 

What is, cont from page 3 

picked up by the detectors and provides information about the cell’s characteristics. 

Light that bounces forward (called forward scatter or FSC) gives information about the cell size. Light that bounces off the 

side (called side scatter or SSC) provides information about the inner structure of the cell, such as the shape of its nucleus 

or the amount and kind of granules present. Each type of cell in the immune system (lymphocytes, monocytes, neutrophils, 

etc.) has a unique combination of forward and side scatter measurements, allowing the instrument to count the number of 

each type of cell present in the sample. 

Flow cytometers can also use antibodies tagged with fluorochrome stains that bind to specific antigens on the cell surfaces. 

In the case of leukemias and lymphomas, these fluorochrome-tagged antibodies bind with and identify protein surface 

markers on the immune cells called cluster differentiation (CD) markers. When a fluorochrome stain is added to the cell 

sample, a laser beam excites the cells so that they fluoresce and emit a specific color of light, depending on the type of 

fluorochrome stain used. Color detectors collect the different colors of light and send the data to the computer. 

Modern flow cytometers usually have multiple lasers and fluorescence detectors. Increasing the numbers of lasers and 

detectors allows for multiple antibody labeling and can more precisely identify a target population of cells. 

The computer attached to the flow cytometer tabulates the data from the light scatter measurements and the fluorescing cells 

and can plot the data in several ways. The most common plot is a graph called a histogram, where fluorescence intensity 

or the degree of scattered light (x-axis) is plotted against the frequency at which this type of event occurs (y-axis). From 

such a histogram, the population distribution for the particular cell(s) of interest can be determined. Other types of plots are 

called dot, density, or contour plots. The operator of the flow cytometer can select certain cell populations based on their 

characteristics in order to refine and further analyze the data—a process called gating. 

Flow cytometers can also be configured as sorting instruments. As the cells pass through, they can be electrically charged 

selectively and on their exit can be deflected into separate paths of flow. It is therefore possible to separate several defined 

populations of cells from an original mixed sample with a high degree of accuracy and speed. Sorted cells can be further 

examined microscopically, re-stained for additional analysis, or put into tissue culture for research purposes.

Fall 2007 - International Waldenstrom's Macroglobulinemia ...

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