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Mohr’s Myeloma Musings: Change Of Game Plan
By: Steve Mohr; Published: February 16, 2017 @ 4:12 pm | Comments Disabled
During my 25-year career as a boy’s head basketball coach, I found the most satisfying (and most important) part of coaching was planning and devising game plans.
Putting my knowledge and experience to test to give my teams the best chance of winning was challenging and time consuming, but also enjoyable and exciting. Equally enjoyable and exciting was making adjustments to the game plan during the course of the game.
At times the game plan worked to perfection. Sometimes, the plan had to be adjusted immediately. With my better teams, the game plans varied little from game to game, as the focus was on doing what we did best. We made the opponent adjust to what we did rather than adjusting to them.
When devising a game plan, I always consulted with my assistant coaches and especially with my players to make sure they were comfortable with the game plan we were going to use.
Treating multiple myeloma is similar to devising a game plan for an athletic contest. Oncologists use their knowledge and experience to devise treatment plans. They use the talents of their medical team to assist them and constantly communicate with their patients about how they feel about the treatment plan. More importantly, they closely monitor how effective the treatment plan is in controlling the multiple myeloma.
Like game plans, treatment plans may work to perfection from the outset. Sometimes only minor adjustments are needed. In some cases, the entire treatment plan needs to be scrapped and a new one put into place.
In my case, the game plan my doctor put into place has essentially worked to perfection. From the initial “watch and wait” period, through induction therapy, an autologous stem cell transplant, and maintenance therapy, very few adjustments have been made. A reduction in my dexamethasone (Decadron) dosage during my induction therapy is the only real change that has been made.
Despite the great game planning by my doctor, we have decided to make a significant change in my treatment regimen, as I have decided to stop my maintenance therapy.
I made this suggestion to my oncologist because of quality of life issues – including severe diarrhea, occasional bouts of fatigue, and moderate neuropathy – which have seemed to worsen over time. Welchol (colesevelam) has controlled the diarrhea, but it always leads to constipation, which, in my case, is far more uncomfortable than diarrhea.
These quality of life issues raised the classic question for me whether the treatment was actually worse than the disease. Routine laboratory tests to monitor my multiple myeloma – the serum protein electrophoresis (SPEP) test, the serum free light chain test, and the serum immunofixation electrophoresis (IFE) test – have consistently shown my myeloma numbers to be in the normal range since my stem cell transplant. If such is the case, I've asked myself, why suffer from Revlimid side effects when the disease is under control?
My doctor suggested minimal residual disease (MRD) testing to determine how many multiple myeloma cells remained in my bone marrow. MRD testing is done by counting myeloma cells in a sample of the bone marrow aspirate. It uses one of several methods that are far more sensitive than the routine blood tests for multiple myeloma. The tests can detect even one myeloma cell in one million total cells.
For patients who have achieved a complete response (CR) or stringent complete response (sCR) during their treatment, MRD testing can provide more information about exactly how effective the patient's therapy was. A patient who tests MRD negative has gotten a very deep response to treatment, and very deep responses often lead to long remissions.
I agreed to have MRD testing done. A bone marrow biopsy was performed that day. Like the three previous bone marrow biopsies I have had, it was uneventful. I experience more pain at a dental visit than I have ever felt in any of my bone marrow biopsies.
I knew the results of the test were not what I had hoped for when my phone rang at dinner one evening, and the identified caller was my oncologist. My experience has been that good test results come from physician assistants at my cancer center, and that bad test results come from my oncologist.
After delivering the news that I was MRD positive, which means that myeloma cells could still be detected in my bone marrow, we discussed what course of action to pursue. One school of thought among myeloma specialists is to continue maintenance treatment when results are MRD positive.
I decided against this approach and chose to stay off treatment until my myeloma numbers rise above the normal range and there is evidence of an M-spike. What I really appreciated about making this decision was that my doctor listened quietly to my reasoning behind this change in game plan, respected my reasoning, and supported my decision. This was comforting because he had previously told me he would never allow me to make any dumb or bad decisions about treating my disease.
Time will tell whether this change in our game plan was a good adjustment. In early March, I will have new blood work done, and it will be interesting to see what happens with my myeloma numbers.
Until then I'm going to continue enjoy near normal "gastrointestinal function," no bouts of fatigue, and tolerable neuropathy.
Steve Mohr is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here [1].
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