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Live from the Support Group Leaders' Summit - The End of an Interesting Day

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After a fun mental exercise led by facilitator, Alan Kumamoto, Dr. Durie presented a summary of the outcomes of the discussions at the Second  Imternational Myeloma Working Group (IMWG) Summit, recently held in London. First he explained the value of the collaborative effort that is the IMWG, and then he went on to talk about the six issues they addressed and whether there was consensus or not, and what consensus represented within the group. The six issues were 

    1. Diagnosis and management of high-risk myeloma
    2. Sequential vs Curative Strategies: Testing 2- vs 3- vs 4-drug combos
    3. Role of early transplant
    4. Maintenance or consolidation
    5. Integrating new and existing drugs into the myeloma treatment paradigm
    6. Risk stratification in myeloma

The Support Group Leaders as a whole were very interested in this presentation, despite the fact that it was very esoteric. Why is this, you might ask? Well, I have found that myeloma patients in general, and the support group leaders in particular, are very well-versed in the details of treatment, response, relapse, maintenance and so on. When I worked for the NCI's Cancer Information Service, I had a woman tell me that her doctor told her she had garden-variety breast cancer. And she accepted this!

Well, no doctor I have every heard speak has ever tried to tell myeloma patients anything even remotely like that. I am not sure if anyone tried if he (or she) could get away with it. Most of the support group leaders here have attended the IMF's Patient & Family Seminars, where the top players in the field of myeloma research present current fields of study in language we all can understand. Most read the literature, and follow the work of the IMWG.

durie_introsgls11.jpgDr. Durie will cover the Summit outcomes in his blog, so I am going to move on to what really caused their ears to prick up. He began to talk about the search for a cure. It seems at the Summit, Dr. Russell from the Mayo Clinic presented a talk on oncolytic virotherapy. Myeloma cells killed by a virus assisted by interferon. And Dr. Durie said this is a little like the concept of the black swan. He discusses this in his blog. Tradition says that if we cannot conceive of a black swan, we will not go looking for one. We have to be open to all possibilities--to the "highly improbable." We have to be willing to run down dark alleys in the search for light. And if using a virus against myeloma can be shown to be effective in mice, then we need to follow that possibility. We need to be open to the concept of a finding a cure.



At the end of the day, Arin Assero, Director of IMF Advocacy, introduced the group--who included as I said before--many new leaders, to advocacy. What is it? Why is it important. And then members of her team, Meghan Buzby and Christina Vargas, held the first All-Star Advocacy Oscars, presenting statuettes to IMFers who had gone to their state legislatures or Capitol Hill to testify successfully on behalf of drug oral parity bills.


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advo-award-Aiellosgls11.jpgOn the red carpet, beneath swaying spotlights, Michael and Robin Tuohy, Sue and Rob Enright, Caethe Goetz, Jerry Walton, and Jack Aiello received awards, Congratulations to them all.

Now it is time for all to relax and have some dinner. I am looking forward to talking with more of the great people who have gathered here. I promise (!) I will have pictures tomorrow.

Good night.

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