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February 2003 Volume 5, Issue 5:
Report from the Los Angeles IMF Patient & Family Interactive Seminar

This issue of Myeloma Today is sponsored in part by an unrestricted educational grant from Novartis Pharmaceuticals.

Los Angeles IMF Patient & Family Interactive Seminar faculty:
Dr. Jeffrey Wolf, Dr. Robert Vescio, Dr. Morie Gertz, Dr. Jean-Luc Harousseau, Dr. Brian Durie, and Anne Grainger

After attending dozens of IMF Patient & Family Seminars all over the world, what Unknown reason keeps the Unknown Patient coming back? Each seminar offers something new. Something new from the faculty. Something new from the hundreds of people who come together to learn and to share. The latest IMF seminar, held in Los Angeles on January 24 and 25, 2003, was no exception.

Registration Desk

The seminar began on Friday afternoon with a session given by Regina Swift, RN (Clinical Research Coordinator, Multiple Myeloma & Bone Metastasis Program, Cedars-Sinai Medical Center, Los Angeles, CA). She presented on "Pain Management & Quality of Life Issues." This was followed by a very useful talk by Barbara Schwerin, Esq. (Director, Cancer Legal Resource Center, Loyola Law School, Los Angeles, CA) who covered "Managing Insurance Issues."

Dr. Brian Durie, Susie Novis,
and Regina Swift, RN
IMF Director Mike Katz
with presenter Barbara Schwerin, Esq.

Following these sessions, there was a great opportunity to meet new folks as well as old friends at the welcome dinner, which was preceded by a cocktail hour. The Unknown Patient was delighted to find Sheila Field and her family. Sheila is a faithful friend of the IMF and a prime mover in the Los Angeles support group. Sheila has been through a very tough year and it was wonderful to see her on the mend and charming the crowd, as usual.

The Field Family
Thelma and Abe Alkana

At the Welcome Dinner

Sitting down to dinner, the Unknown Patient met a lovely newlywed couple, married just last month and both in their seventies. The bride was the patient. For some Unknown reason, her doctors seem to have given up on her—despite the fact that she had received only minimal treatment, she was put on morphine and told there was nothing else to be done for her. The Unknown Patient and his tablemates were stunned and spent most of dinner making sure that the couple would seek another opinion ASAP.

Mike and Regina Conti with Susie Novis
Beverly and Jon Cross

After dinner, IMF President Susie Novis presented donor recognition awards to a number of generous IMFers. Last year, about 8,000 donors stepped up to support the IMF mission with gifts of all shapes and sizes. While the IMF does receive support from pharmaceutical companies, the bulk of its support comes from individuals whose lives have been touched by myeloma. The Unknown Patient is grateful to all who help make it possible for the IMF to do its good work!

IMF supporter and frequent volunteer Wilma Sallman with Susie
Donald and Mary Spicer

On Saturday morning, the Unknown Patient got an early start, skipping the breakfast buffet to catch up with old friend Mike Katz, who was working feverishly to get the equipment ready for the Interactive program—the IMF's new system that allows attendees to get more directly involved at IMF seminars. Participants use electronic keypads to answer questions posed by the faculty. Their answers are tabulated by computer and displayed on a projection screen in front of the room. After some Unknown video problems were resolved, the system was ready to go. Mike and his Unknown friend breathed a deep sigh of relief.

Jerry and Françoise Pransky
Lucas and Johanna Dekker

The sessions started with a talk by Dr. Morie Gertz (Mayo Clinic, Rochester, MN) who explained the basics of myeloma, clearing up many Unknowns for the group. He did a wonderful job, using real world analogies and drawing diagrams to explain what myeloma is and how it is treated.

Mike Katz then took the group through some introductory Interactive questions, revealing that 2/3 were attending their first seminar and just over 1/2 the group were patients. Over half of the patients in the group had been diagnosed over 2 years ago, with 15% reporting they were diagnosed over 5 years ago.

Sample Interactive Screen Display of Tx Options

Next, Dr. Brian Durie (Cedars-Sinai Comprehensive Cancer Center, Los Angeles, CA) reviewed standard treatment options, which have changed quite a bit in recent years. The change was evident when participants were asked about their own first treatment and current treatment and the Interactive tool registered their responses, summarized in the graph above. The growing prominence of Thalidomide and Thal-dex and the declining numbers for MP (melphalan-prednisone) and VAD (vincristine, adriamycin and doxorubicin) were striking.

Ray and Roberta Klein flank Susie Novis

Prof. Jean-Luc Harousseau (Founder, Intergroupe Francais du Myelome, Nantes, France) was up next to talk about Stem Cell Transplantation. Dr. Harousseau is one of the world's top experts on myeloma transplants. In fact, his study on tandem (double) transplants was chose for presentation at the plenary session of the 2002 meeting of the American Society of Hematology (ASH). Dr. Harousseau reviewed current data on autologous and allogeneic transplants. His data shows that a second autologous transplant improves survival when there is a less than complete response to the first. He also reviewed progress in allogeneic (donor) transplants, where the mini-allo is now the focus of new clinical trials. In a mini-allo, an autologous transplant is followed by a non-ablative, donor transplant (where the patient's marrow is only partially destroyed by high dose chemotherapy before the donor cells are infused).

Dr. Vescio reviews approaches to managing bone disease.

Dr. Robert Vescio (Assoc. Director, Multiple Myeloma & Bone Metastasis Research Program, Cedars-Sinai Comprehensive Cancer Center, Los Angeles, CA) reviewed current approaches to managing bone disease, focusing on bisphosphonate therapies (i.e., Zometa and Aredia). Dr. Jeffrey Wolf (Director, Bone Marrow Transplantation, Alta Bates Comprehensive Cancer Center, Berkeley, CA) discussed novel therapies currently in clinical trials, including Velcade (a.k.a. PS-341), a proteosome inhibitor, and Revimid, a thalidomide analog. The Unknown Patient couldn't help but be excited about these new treatments. There seems to be more and more progress generating new options for myeloma patients. While the ultimate benefit of these new treatments will remain Unknown until clinical trials can be completed, the pace of progress is accelerating and it can only mean good things for those of us battling this difficult disease.

Fred and Viginia Gloor
Herman and Ester Adler

Ann Grainger of the UK-based company, The Binding Site, explained their new blood test, FreeLite, which has been a boon for many, the Unknown Patient included. Some myeloma patients are "non-secretory," which means that their myeloma cells don't manufacture fully-formed immuno-globulins. Standard blood protein electrophoresis tests, which measure IgG and IgA levels in the blood, are useless for these patients, so their disease can be difficult to track. The test is also being considered as a potential replacement for the 24-hour urine test, which the Unknown Patient and many others would gladly avoid if they could.

Dr. Mehl-Madrona uses the IMF’s new Interactive tool
to make a point that gets everyone’s attention

The last speaker was Dr. Lewis Mehl-Madrona, author of "Coyote Medicine," who discussed alternative healing, mind-body interaction, and spirituality, and their role in battling cancer. His talk was inspiring and invigorating, and was the perfect high-energy finale before everyone went off to the breakout sessions.

Dr. Gertz in his breakout session.

The afternoon breakout sessions provided an opportunity to get up close and personal with the expert faculty, as well as to network with fellow patients and caregivers. By the time the group reassembled for the wrap-up, the Unknown Patient had met many new friends and learned some exciting new things to help in his battle against myeloma. The Unknown Patient thanks the dedicated faculty for volunteering their time and Susie Novis and the dedicated IMF staff for making it all possible.

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