BACK IN THE TRENCHES AFTER 2016 ASH
Less than a day after returning from 2016 ASH, our IMF Westchester [NY] Support Group met for our monthly meeting. The format spontaneously changed into a two-hour discussion, in place of our customary round table where each person has an opportunity to discuss their current status and to ask questions. I interjected various nuggets picked-up over the four-day conference and was surprised at how much I could remember. This was due in part to Dr. Durie’s informative Making Sense of Treatment video broadcast live on Monday, December 6 with Drs. Mikhael and Lonial; I encouraged everyone to go to listen to it here.
CURIOSITY: One notable personality characteristic of the presenters and attendees was their deep curiosity in the workings of the immune system, the genetic system and anything myeloma-related. As a patient, we need to live with a great deal of uncertainty—this is our state-of-the-art—so I am encouraged by the curiosity of those scientists working for a cure. Let go of our rigidity and by all means, figure out a way not to regret our choices. Above all, think about whether or not we trust our selected hem/onc because each will have a recommendation for treatment that derives from years of experience, research, and reading.
THOUGHTS: I have put in a suggestion for next year’s ASH meeting – SGLs (otherwise known as “support group leaders”) met with Amgen (Kyprolis), Janssen (Darzalex), Celgene (Thalidomide, Revlimid and Pomalyst), Bristol-Myers Squib and Takeda (Velcade and Ninlaro) for one hour or more each. The companies wanted to know what they could do for patients so far as education and other support. Interestingly, it struck me that they will step in further to this role not only because many of the medical centers do not emphasize patient education, but also because most of the companies are willing to send their nurse educators anywhere in the US – to the smallest towns far away from medical centers. There is a long way to go before patients will trust drug companies as much as their MM physicians. THEREFORE, it would be wonderful if support groups leaders could meet next year at ASH with several medical center groups so these experts would recognize us and learn even more about what patients are discussing. Perhaps they would be more willing to uniformly alert patients to the IMF and their vast resources, including the info-line, downloadable publications, Dr. Durie’s blog and weekly “Ask Dr. Durie” and the emailed Myeloma Minute. My last thought for this blog is that perhaps the SGLs can be more active while attending ASH and try to create our own top ten list of succinct take-aways to provide our groups!
CLINICAL TRIALS: I spoke with Celgene and with Amgen at their exhibits in the gargantuan Exhibit Hall over the weekend. A PhD in each case was quite interested in the side effects that I have been experiencing (shortness of breath, elevated blood pressure, benign essential tumor, fatigue, and perhaps a bit of peripheral neuropathy), took down all of my information on a form and offered to speak with my multiple myeloma (MM) specialist. Moreover, they offered to research the most serious and disturbing side effect – a tremor in my hands – indicating that they could spend the time finding information that the MM specialist may not have the resources to uncover. I took up the Celgene offer on this, as the clinical trial showed a significant percentage of the trial participants did develop a tremor. When I asked whether those tremors had resolved, progressed or gotten worse, they did not know. Once the trial ends, the patients are not followed.
This strikes me as a large gap in what we as patients would like to know. My point is that patients can always call the pharmaceutical company that makes their treatment and speak with someone there who could prove useful.
