I'm sure all of you have been following the topic of second primary cancers in myeloma which has recently been in the news. If you have not yet had the chance to read the IMF's "Frequently Asked Questions" as well as the follow up "Statement," I highly suggest you do so. Here are the direct links:
Frequently Asked Questions:
Follow Up Statement from Support Group Leader Conference Call on Second Primary Cancers and myeloma treatment:
My husband Michael and I discussed the ASH studies and above articles at length. Of course, just like all of you, we are concerned about any issues on myeloma treatment.
Michael is an 11-year myeloma survivor, diagnosed in 2000 at the age of 36. He was fortunate enough to be diagnosed with myeloma at the best possible time. Sound crazy? Well, when you look at what treatment options were available prior to 2000 and that statistics were showing average 3-5 year survival rates; compared to what treatment options are currently available, where we are looking at much longer average survival rates and better quality of life...well, yes, that's positive progress!
Our feelings are that we need to be "patient" patients. Based on the IMF's teleconference for support group leaders in which we took part, it was clear that Dr. Durie, Dr. Anderson and all the International Myeloma Working Group's scientific advisors are hard at work gathering additional data. We cannot and should not jump to conclusions and change our treatment plans until we have clear data. Clinical trials are set up to gather particular information in each phase of the trial. Post-trial data has not been tracked in the past. As patients live longer because of new treatments being approved which give us better quality of life, longer remissions and overall survival, trials are also pointing to other aspects we need to pay attention to and learn from. That is what the experts are doing now.
This is all good news for myeloma patients! We are living longer and learning what treatments are the best options with the least side effects. As corny as it may sound, I totally go back to the IMF's motto of "Knowledge is Power." The more we learn the better off we will all be. So let's try our best to be "patient" patients and caregivers. Talk to your myeloma expert, read the IMF website for updates and trust that the scientific advisors are reviewing all the data feverishly and thoroughly on behalf of us all.
Let me end with Michael's primary thought: "When I relapsed in 2005, Revlimid was in the Expanded Access Phase of the clinical trial. My myeloma expert, Dr. Ruben Niesvizky at Weill Cornell Medical College, Robin, and I discussed all available options at that time. There is no doubt in my mind that Revlimid was my best option. I have enjoyed the last 6 years in complete remission and a good quality of life. Who knows where I would be today if I did not go on Revlimid. Of course, I will keep a close watch to see what the experts learn and advise."