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Spring 2000 Volume 3, Issue 8:
IMF Returns To D.C. Area With Tysons Corner Patient/Family Seminar
By The Unknown Patient
04.01.00
Just when you thought it was safe, he's back. For reasons Unknown to anyone but him, our reticent raconteur had been silent for some time now. He returns re-energized, having had a fantastic experience at the Tyson's Corner seminar.

With his largely Unknown and some might speculate imaginary wife in tow, the Unknown Patient left for La Guardia airport bound for the Tyson's Corner seminar. Tyson's Corner marked our clandestine cohort's eighteenth seminar. But, it was only the second for his stealthy spouse and he was quite anxious that she have a good experience. Beyond the spousal situation, the highly-anticipated appearance of NCI Director Dr. Richard Klausner was a wonderful opportunity for the myeloma community to make a strong impression and deepen its relationship with the NCI, but our almost never timid traveler was a veritable bundle of nerves, thinking of the many Unknown things that might go awry.

Arriving at the hotel, the Unknown Patient and his spouse were drawn into the best element of the seminar experience – people helping people. They met a young couple dealing with a relatively new diagnosis, providing some reassurance and answering seriously difficult questions about treatment timing. While it is always distressing to see myeloma intrude on yet another family, it is gratifying to be able to help people get the facts straight and put things in perspective. Yet another young couple was dealing with the after-effects

of a plasmacytoma in the spine and potential surgical options to repair the damage. As bone damage and surgery are topics not at all Unknown to this author, he was able to share information and make suggestions on the right set of questions to ask the doctors to arrive at a reasonable decision.

After attending an early planning session for the IMF's tenth anniversary benefit and a cocktail reception honoring some of the IMF's most generous donors, it was off to the welcome dinner. The dinner program included an exciting update from IMF Advocacy Consultant, Greg Brozeit. Greg brought us up to date on the wonderful progress that has been made with the Congress and the NCI with the help of some dedicated IMFers and a little bit of luck. Public service awards were given that day to Senator Arlen Specter of Pennsylvania and Representative Edward Porter of Illinois for their help in getting specific "report language" into the NIH/NCI Appropriations bill. Awards were also given to Susan and Rick Alvarado, who were instrumental in formulating and executing the advocacy strategy. At the dinner table, the Unknown Patient sat next to a woman attending the seminar with her aunt, who was recently diagnosed. They used the time well, getting advice from the Unknown Patient, as well as IMF Chairman Dr. Brian Durie, one of the world's leading myeloma experts.

As the dinner ended, the Unknown Patient talked with many old friends, including IMF Board member Don Woodward and IMFer Patty Twilde, who, like the Unknown Patient, were all at the prior Tyson's Corner seminar held six years ago – statistics be damned!

The seminar started bright and early, beginning with a "newbies" session led by Prof. Brian Durie. This session offered an opportunity for those new to the subject to learn the basics and ask their questions before the full seminar was convened. This was a first, as was the availability of a live webcast, provided by cancereducation.com. The webcast provided live audio/video over the Internet, which was viewed by about 200 people on the day of the seminar. Combined with the audience of 430 in the room in Tyson's Corner, the webcast brought the total attendance over 630! And, the program is available for viewing in the cancereducation.com archives, along with last fall's Los Angeles seminar. To view these programs, visit the website at http://www.cancereducation.com and pick multiple myeloma from the Patient and Family Center menu.

The main seminar opened with a classic, class act – Dr. Robert Kyle of the Mayo Clinic. Dr. Kyle is affectionately known as "the grandfather of myeloma," having worked tirelessly for decades, treating patients and breaking new ground in research. Dr. Kyle covered the array of diagnostic tests necessary to understand the status of the disease and make intelligent treatment decisions. He also went over the tried and true treatments, along with newer agents, such as thalidomide, and a discussion of the most common side effects. Dr. Kyle fielded questions about interleukin-2 (IL-2), interferon, thalidomide and transplants from the Tyson's Corner audience as well as the webcast viewers.

Next up was Dr. James Berenson, best known for his work in bisphosphonates for controlling myeloma bone disease as well as the potential involvement of viruses in multiple myeloma. Dr. Berenson spoke about myeloma bone disease, explaining how myeloma can cause bone damage and what can be done to prevent it. Aredia remains the stalwart drug for preventing bone damage. Aredia is typically given once every four weeks via a 1-4 hour intravenous infusion. Research is proceeding apace on a new drug, Zometa, which is much more powerful than Aredia and can be given in a 5-10 minute "push" infusion. The research is focused on establishing proper dosage as well as the safety and effectiveness of Zometa vs. Aredia. A questioner from the web asked about the potential use of taking 180mg of Aredia every two weeks, essentially doubling the dosage and the frequency (taking a total of 360mg over a four week period vs. 90mg, which is the "standard" dose). Dr. Berenson commented that there was a study performed showing that the higher dosage is safe but that there was no data showing that it was more effective. So, the jury is still out.

One of the Unknown Patient's favorite IMFers, Michael Katz, introduced a brief video telling the IMF story, remembering its valiant founder, Brian D. Novis. Mike concluded by recalling the contributions of others who have followed Brian, including Francesca Thompson, Sharon Rudolph, June Brazil, Leta Garvett, Bill Solomon, Don Springer, Charles Briscoe, Pam Ferraro, Cathy Lebkuecher, and the list goes on.

Mike then introduced Dr. Richard Klausner, the Director of the NCI. He saluted Dr. Klausner for his dedication to the fight against all cancers as well as his courage in challenging conventional wisdom and breaking through the politics and bureaucracy of the scientific community and the government. Dr. Klausner returned the compliment, thanking Mike for his help in chairing the NCI Director's Consumer Liaison Group, the first all consumer advisory committee to be chartered by the federal government.

Dr. Klausner provided a layman's explanation of the major research thrusts at the NCI. Particularly fascinating was his explanation of the human genetic system, a magnificently complex "recipe book" which contains the instructions for making every type of cell in the body. Dr. Klausner described the role of genetic mutation (alterations to that recipe book) in the pathogenesis (disease process) of cancer. Working on ground breaking efforts like the Cancer Genome Anatomy Project (CGAP), the NCI is working to build a comprehensive database of the genes involved in cancer that researchers can use to develop screening approaches and potential treatments. He reviewed efforts to identify cancer "hot spots" across the country and help remove the potential causes.

Dr. Klausner was gratified to report that there has been a material drop in the number of cancer deaths over the past five years. He pointed out, however, that this is not true for all cancers and that the NCI wants to be able to report this kind of progress for all cancers, including myeloma. He announced that myeloma would be the subject of a "Progress Review Group" (PRG), which is the NCI's mechanism for identifying priority areas that need to be addressed for specific diseases. He stated that when the PRG's work is complete, there will be, for the first time, a plan in place detailing the progress to date and future priorities for myeloma research. Understandably, this announcement was greeted with thunderous applause.

The NCI Director spent over an hour with the group, despite the fact that his ten year-old son was waiting impatiently at home for his dad to help him with his science project. Mike thanked Dr. Klausner for being so generous with his time and for caring enough to spend it with people battling a cancer that most have never heard of.

Dr Raymond Comenzo of Memorial Sloan Kettering spoke about amyloidosis, a form of myeloma in which monoclonal proteins deposit on vital organs, causing additional complications. Dr. Comenzo covered diagnostic techniques, symptoms and explained standard treatments and new therapies in clinical trials for amyloidosis.

Scheduled to be up next was Dr. Bart Barlogie, a transplant pioneer and most recently the leader of groundbreaking research into thalidomide as a treatment for multiple myeloma. But alas, it was not to be, as the distinguished doc was snowbound in Little Rock, Arkansas and unable to get to Tyson's Corner. The rest of the faculty pitched in, leading a panel discussion and question and answer session on transplants and thalidomide.

The seminar concluded with the all important breakout groups, where the attendees got to ask their questions of the experts in a more intimate setting. Most people went from room to room, taking advantage of the opportunity to discuss their issues with some of the world's leading myeloma experts.

And so ended one of the best seminars the Unknown Patient has ever attended. After eighteen seminars, he's still, for reasons that are far from Unknown, still coming back for more. He hopes to see you at one soon!


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