CureTalk Interviews Jack Aiello, Multiple Myeloma Survivor and Advocate – Part 2: Fighting Myeloma and Living a Normal Life
Me: What according to you is the most interesting development in the field of multiple myeloma research that you feel is a step in the right direction?
Jack: There is certainly not a single “most interesting” development. The last decade has seen the advent of novel therapies, resulting in more treatment options for MM patients. And more new drugs and treatment protocols are coming soon. I’m fortunate to have attended the ASH (American Society of Hematology) meeting each of the past 6 years and it’s incredible all the research results that get presented. I can’t wait to attend ASH each Dec.
Maybe the most interesting future development is to research why patient responses vary considerably to treatments. We need to answer the question “Which is the best treatment for me?” There are investigative projects involving tissue banks, gene arrays, genome studies and more to answer this question so that perhaps curative treatments can become more the norm than the exception (if at all).
Me: Do you believe that being an informed patient has helped you in this fight against multiple myeloma?
Jack: Each myeloma patient (and/or their caregiver) needs to be their own best advocate, and today we have many resources available to get educated about our disease. The organizations (IMF, MMRF, LLS) I previously mentioned, this CureTalk program, Patient Power, local support groups, seminars, teleconferences, webinars, and second opinions from MM expert oncologists are all ways in which the patients can learn more about MM and share treatment experiences with others. I facilitate our large SF Bay Area MM support group (www.sfbayareamyelomasupport.org) so it’s easy to understand why I feel so strongly about this.
Me: Are you under any kind of treatment now? What is your current treatment regimen?
Jack: I’m not currently on any treatment for MM.
Me: You have had two transplants. What is your opinion on treatment without transplant which incidentally is our November Cure Panel topic too?
Jack: Actually, I had three transplants, two autos and a full allo. My opinion is that transplant-eligible should consider a transplant as one of their treatment options. For example, perhaps a patient wants to harvest and freeze stem cells so that it’s easier to keep the options of a transplant in their future. At this moment there are clinical trials comparing transplants with no transplants (or delayed transplant) to answer the question of transplant but I suspect the answer to “transplant or not” won’t be known for 5-10 years…and by then, who knows what other treatments might be available?
Me: You were involved in Thalidomide clinical trials. What would be your advice to people on clinical trials?
Jack: Participation in clinical trials is the way we advance treatment knowledge for myeloma and other cancers. And there can certainly be patient benefits in clinical trial participation including closer patient monitoring, cost reductions, and early drug access. Of course, participation is a very individual decision. However, a patient should be aware that placebos are not used in clinical trials, the only exception being the possible addition of a placebo to standard treatment of care are compared with new drug treatment arm.
Me: What would you like to tell our readers about fighting myeloma and living a normal life?
Jack: I’m not sure, at least today, if you’re diagnosed with myeloma, that life is as “normal” as it was previously to learning of this diagnosis. You’re thrown into another world learning about this word “myeloma” you’ve probably never heard before and need to find a good oncologist/hematologist, make treatment decisions, deal with insurance companies, and more. However, patients can certainly live well with myeloma. It was my GP who told me when I was first diagnosed in 1995 that myeloma was not a death sentence but rather a cancer to be managed. I know how fortunate I am to have managed it since then. And fortunately today I see more long-term survivors than ever before.
Thank you Jack. It was great to connect and thank you for sharing your story with CureTalk.