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Support Group Leader Summit 2012 - And So We Begin


It's 2:45 in the morning, and we have finished the first day of the 2012 Support Group Leader Summit. Although this is the 13th Summit to be held, this is only the second Summit I have attended in my 10 years with the IMF. (I am the web producer, and as a rule we don't get out that often.) I was only too happy, though, to be asked to blog again. Last year's Summit was an inspiring and emotionally moving experience. (You can see what I wrote about the first day last year here.)


It is wonderful to see everyone again and to meet the new leaders. You have to understand that to me these are truly amazing people. Almost all of them--we have some social workers and nurses in the group who are also amazing--are patients or caregivers themselves. They could have turned inward on receiving a diagnosis of myeloma, but instead they turned outward and have committed themselves to helping others. And there are so many new leaders here this time! Leaders who have created groups where there were none. We even have one couple who has come to learn how to start a support group. (I will give everyone a name as I go along. Right now, in the middle of the night, I just want you to know what it felt like to be in the room yesterday.)

We started the Summit with a welcome from Susie Novis, who thanked the sponsors, identified a couple of leaders who had been at the first Summit (wow!) and went on to explain that Robin Tuohy and the Support Group Team had given everyone a seat assignment because there were so many new leaders they wanted the newbies to be seated with more veteran leaders.


She then introduced Dr. Durie, who gave us his annual medical update. I am sure he will blog about the specifics of his talk. Or at least I HOPE he will, because--like last year--some of it was very esoteric and I cannot do it justice. The gist of it was that for a myeloma doctor, these are very exciting times. In the last 5 years it has been particularly exciting because of the new drugs and things happening that are going to improve the outcomes for patients for myeloma.

First of all he talked about the new drug that has recently been FDA approved (Kyprolis) and those that are on the horizon such as pomalidomide, elotuzumab, and panobinostat. And then he began to explain how the International Myeloma Working Group (IMWG), made up of 160 of the world's myeloma experts, is turning its attention to several new strategic concepts involving early disease, frontline therapies, supportive care, maintenance, myeloma treatment around the world, and how to identify and manage plasma cell leukemia (PCL) and extramedullary plasmacytomata (EMP) in 2012.

Again, I will let Dr. Durie explain in detail what the plans are, but I got from the talk that although they are very excited about the new drugs, research into what are the most effective combinations of currently available drugs is also leading to some interesting results. What are the best and most cost efficient treatments and the ones that give the best quality of life.

He said there has been a shift in medical focus that is happening right now. In the last few years there has been a lot of interest in chromosome testing in myeloma. And now there is multiparameter immune testing that can be used to more clearly identify patients in different groups so that they can come up with more personalized therapies.

He also said that if we are looking for a cure, although it is important to identify the poor risk patients, the cure is going to come by looking at the good risk patients and determining what will work to bring them long progression-free survival.

He talked about so much that is so new, my head began to swim. He gives the leaders this update because he wants them to know about what is in the pipeline and  share the information with their members. I came away feeling confident that Dr. Durie and his 


colleagues were on the case.

Next up were Meghan and Aimee and the incredible accomplishments of the Advocacy Team. But I am going back to bed for now. More later.


Your use of the term esoteric is an excuse for the medical practioner being unable or unwilling to speak in terms that may be reasonably understood by patients, spouses, caregivers,or other interested laypersons. These physicians,who may be leaders in their field of practice, should be able to converse meaninhfully with those of us who really want,and need, to understand what they are ptesenting.

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