Last Thursday I visited my oncologist. We reviewed the most recent lab tests. Things are good. My M-Spike holds at 0.1 g/dL and serum free light chain numbers are all within the reference range. My drug-free remission continues 21 months post transplant.
On Friday I drove to Portland, OR to attend the International Myeloma Foundation’s Patient and Family Seminar. My wife and I attended one in Seattle back in 2008. At the time, we were new to the myeloma world. The vast amount of information overwhelmed us, though we did learn a lot. This time around, I arrived as an informed patient full of questions and able to better appreciate the comprehensive analysis of our complicated disease.
- I met several individuals who, like myself, were in the midst of long term remissions from autologous stem cell transplants with durations of 3, 4, 6, and 8 years. Our conversations validated the choice we made prior to the availability of today’s drugs.
- Multiple myeloma patients can be thought of as “slow growers” and “fast growers.” Approximately 1 in 4 patients with MM presents with high-risk disease that requires more aggressive and continuous therapy.
- Typically, most of us with MM received a prognosis of 3-5 years. Now, the consensus is a median survival rate of 8+ years. That is a significant change since my diagnosis in 2007.
- Transplants, plus thalidomide, revlimid, and velcade are the current therapies leading this improvement. Furthermore, new drug trials on their derivatives are promising. An interesting outcome of the trials of those drugs is that individuals who became resistant to revlimid and velcade are responding well. These new drugs are still winding their way through the FDA’s regulatory process.
- Bone lesions do not ever completely heal. Deterioration can be arrested. Scar tissue forms but the bone is not as strong. The doctors at this seminar do not recommend bisphosphanates in the absence of bone lesions. Dr. Berenson’s group in LA, however, does. So, differences of opinion exist.
- There is currently no drug solution to peripheral neuropathy. PN caused by drug treatment needs to be addressed with dosage adjustment when it first appears or it may become a chronic problem. Well, I think most of us with PN knew that but it was nice to hear experts say it aloud.
- Studies presented at last year’s ASH meetings showed remissions after transplant could double with maintenance. Overall survival, though, did not improve. Consequently, many doctors still prefer waiting until relapse before interfering with a remission.
- I heard numbers as high as $8500 per month for revlimid and something similar for a month’s worth of velcade infusions!!!
Cure or Control?
No unequivocal answer here. The lineup of speakers was laden with doctors from the Mayo Clinic. Their philosophy favors controlling myeloma. The default metaphor used was that of pruning a tree. I asked for comments on the University of Arkansas Medical School’s Total Therapy protocol. Arkansas is the only myeloma clinic touting a curative therapy.
Part of the Mayo philosophy stems from the belief that there is no such thing as a safe drug. Therefore, the extraordinary induction, double transplants, bridging, and maintenance treatments of Total Therapy limit it to younger patients capable of tolerating and enduring the regimen. Issues of quality of life and toxicity causing chronic side effects need careful consideration. Moreover, the side effects can be both physical and financial.
Nonetheless, UAMS is held in high regard for their genetics studies and proof that intensive therapies can alter the equation. The feeling I got was that we are all in this together and differences of opinion drive the science forward. I recommend readers refer to Nick’s Myeloma Blog for a highly detailed first person account of the Total Therapy protocol.
Attendance at the IMF seminar filled me with encouragement about my health. The IMF is our friend. This year marks their 20th anniversary. During that span, they have raised $57 million for research and education. The IMF, along with the MMRF and the Leukemia and Lymphoma Society are fundamental to us being well-informed and living longer healthier lives with multiple myeloma.