Last night, I watched the movie "Contagion". The movie was just OK, but I got a kick out of one of the lines in the film. One character was a blogger, who described himself as a writer, to which another character responded, "Blogging is not writing. It's graffiti with punctuation." Now I know what I am: a punctuating graffiti artist (PGA?). It's nice to know my place in the world.
Pat Killingsworth recently posted an interesting video by Dr. James Berenson, who gave an update during the recent ASH conference on the drug development pipeline for Myeloma. Here is the link:
http://www.patientpower.info/video/update-on-the-drug-development-pipeline-for-myeloma?autoplay=1
I invite you to watch the video, even though it is sprinkled with lots of technical terms. He gives a very upbeat assessment of the status of the many new drugs under development for treating MM, especially for patients who fail their existing treatments. While these drugs have not yet achieved FDA approval, some are now in the approval process, while others may be available to patients in a clinical trial setting. It's encouraging to note that if a drug in a certain class stops working, other drugs in the same class may still be effective. Thus, if I became refractory to the proteasome inhibitor MLN9708, it could be effectively replaced by Velcade or Carfilzomib. Similarly, the immunomodulatory drug lenalidomide (Revlimid) could be replaced by thalidomide or pomalidomide. The bottom line is that there are now many tools available for treating MM. Dr. Berenson says that median life expectancies have gone from 30 months to 130 months over the last 10 years, and we are on the verge of regarding myeloma as a manageable rather than incurable disease. It's a very optimistic overview. I'll drink to that! (Oops, sorry Dr. Richardson.)
Last week we met with Muriel Gannon, the transplant nurse, who gave us a blow-by-blow description of what to expect throughout the transplant process. While it clearly won't be pleasant, knowing what is coming is more comforting than facing the unknown. I told her then that I was inclined to go immediately to transplant after stem cell collection, but that I wanted a confirming opinion from Dr. Richardson before finalizing that decision. She said she would email Richardson, who was in Ireland at the time (playing golf, I hope). Today she responded that "Dr. Richardson is very impressed with your Complete Response and told me we are good to go with the schedule as it is." So that's it...the die has been cast, the Rubicon crossed, the bridges burned, fait accompli. Let's go for it!
Yesterday, I got my new crown and bridge installed. It looks good, which it damn well better for the price I paid. I am also scheduled to go back to the dentist next week for the pre-transplant dental evaluation and x-rays, which is a prerequisite for getting approval for the ASCT. Since I have now taken care of all my dental work, I should be in good shape with that.
Hi Bill - I will have to cross that path in the near future. Since you are responding so well to the drugs, why did you decide to go ahead with the transplant, as oppose to waiting? Is your decision based on statistics, your gut, etc?
ReplyDeleteThanks
Mike from NY.
Hi Mike,
ReplyDeleteAs a retired engineer, I did a fair amount of research and went through a rather thorough evaluation process in trying to decide when to do a stem cell transplant. In my !2/8/11 post, I argue with myself over which way to go. In the end, the decision was based partly on data and partly on instinct. The main factors that contributed to my decision were:
- My age: I'm 69 years old, and my time for doing a transplant may be getting short. I am healthy now, but If I waited until relapse, the toxicities will increase and I might not be healthy enough then to go through with it.
- Second transplant: If I do the transplant now, I might still be eligible for a second transplant down the road, depending on timing and my health. If I wait until relapse, I probably lose the option for another transplant.
- Trial results: The only trial so far showing results comparing early to delayed transplant is a European study (see my 12/29/11 post), which shows better PFS for doing it early rather than waiting until relapse. Other trials are underway, but no other results are available yet.
- Maximum MLN9708 response: I seem to have reached a plateau in my response to the initial induction therapy. If I continue the MLN clinical trial, I run the risk of becoming refractory and having the MM actually progress.
- Complete Response (CR): One could argue that achieving CR is a reason to delay, but I am more persuaded by the counter argument that doing a transplant immediately after achieving CR is the most important predictor for a good outcome and long-term PFS.
- Dr. Richardson opinion: He thinks we should hit the MM with everything we have up front, rather than hold something back in reserve. His opinion counts heavily in my decision process.
- Risk factors: In addition to my t(4;14) chromosome abnormality, my IgA type of MM is more aggressive than the more common IgG type, which in my mind argues for more aggressive treatment up front.
- New drugs: While my transplant options diminish with time, available drug therapies are expanding rapidly, so that I expect lots of effective new drug regimens for treating relapsed MM when that time arrives.
- Gut feel: After mulling this over for several months, it just feels right to do it now. I don't know how much is based on data and how much on instinct, but I'm comfortable that I have made the right decision for myself at this time.
I don't know if this helps you, but it was helpful for me to summarize my thoughts. I think of you often, and I hope you are doing well on the MLN9708 protocol. I would like to keep track of your progress. Please feel free to email me and keep me informed as to how you are doing.
Thanks Bill. This is very helpful. I am doing ok so far with MLN9708. I hoping that my age 51 is helping me to tolerate side effects. Please keep me inform of your progress. Good luck with the transplant. By the way, did you go for a second opinion on this?
ReplyDeleteThanks
Mike
Mike, I'm glad you are doing well on the MLN9708. I didn't go for a second opinion on the transplant, because I don't know who I would ask that I would trust more than Dr. Richardson. In general, however, I would recommend getting a second opinion on a major decision such as this. In my case, I am trusting my own judgment based on my research, as well as Richardson's input.
ReplyDeleteRegards,
Bill