Welcome to the Myeloma Roller Coaster

Living with multiple myeloma is full of ups and downs, twists and turns and surprises. For me an unexpected twist has led to a very happy place.

Welcome ladies and gentlemen to one of the scariest rides of our generation. It will bring you to the highest point only to drop you down at unimaginable speeds. You will enter turns you never see coming and remain breathless to the very end. Welcome to the multiple myeloma roller coaster.

When last we spoke, I was celebrating three years post-ASCT and preparing to pare back my aggressive 3-drug maintenance regimen to something more manageable. I looked forward to a return of precious time to me and my family.  Since that column, the plan shifted to more testing and continuation of the same treatment regimen.

The good news is that my general health remains outstanding with no apparent changes in my myeloma. Regular blood tests continue to register no measurable monoclonal proteins, my free-light chains are normal, and my other blood counts and kidney functions are good for a person taking regular chemotherapy medication.

My physical health is strong, in fact, we ended the summer with a fabulous family vacation to New York and I wrapped up the year attending two-week-long conferences in Minnesota and Tulsa with several hundred colleagues. 

Shortly after writing my last column I met with my doctor, but the conversation didn’t go as I expected. Instead of suggesting a reduction in treatment, he said he wanted to continue the three-drug regimen indefinitely. The reasoning was understandable, given my high-risk cytogenetics, but it was still a big disappointment.

Approaching this meeting I felt I’d achieved an unexpected turning point in my myeloma journey. The treatments had gone so well that I was considering an even greater return to my pre-diagnosis life. While that was always my hope, I didn’t know if it would happen and reaching that point was cause for celebration. While not intended, the conversation with my doctor tempered the celebration.  Wrongly or not  I felt a level of defeat.

More realistically, it all comes down to the risk of relapse. All myeloma patients have the same goals; find the best method to forestall a relapse as long as possible, and be prepared for a relapse of myeloma that is more difficult to fight than the prior incarnation. For high-risk patients like myself, the goals are the same, but the chances of a harsh relapse are greater.

My current treatment has achieved complete response for a substantial time and there are no current signs that is about to change. I’ve tolerated this level of treatment extremely well. The theory, as I’ve been told, is “if what you are doing is working keep doing it, otherwise do something else.” Because the disease could return more aggressively and may not respond as well to the next treatment there is great value to preserve the progress I’m enjoying today for as long as possible.

My doctors and I both recognized we needed more information to make this decision. On my doctor’s advice I underwent another bone marrow biopsy in November 2019, but this time we would test for minimal residual disease (MRD). With a regular blood test, doctors can identify one cancer cell in up to one-hundred thousand blood cells. By contrast, MRD testing can identify one cancer cell in one million blood cells. Because it requires a bone marrow biopsy and it is more costly than blood testing, MRD testing is not regularly prescribed. Myeloma professionals also still debate the value of MRD testing as it relates to treatment decisions for individual patients.

Because the testing requires such precise measurements I waited sixty days for the results. I was not expecting that length of uncertainty, but I tried to temper my expectations. Given the current science, being MRD negative, finding no minimal residual disease, is still fairly rare and a bit of a milestone. During my wait, I assumed I was MRD positive (there must be a monoclonal cell hiding somewhere). I felt it was better to expect the “worst” and be surprised by the best.

I finally received my MRD test results on January 15, 2020 (a whole decade after the procedure). I was shocked and ecstatic to learn I am MRD Negative.

My first reaction was surprise. Perhaps because I’ve conditioned myself to be hopeful, but not overly optimistic I didn’t expect this result. My second response was to feel validated. At least that’s the word that comes to mind. I’ve felt healthy and “normal” for a long time, but knowing I had multiple myeloma and all that goes with it I figured it was a bit illusional. While I know MRD Negative doesn’t reflect any sort of “cure”, and I remain vulnerable to relapse and all the attendant risks of myeloma, at least for this moment there is no myeloma. I’m feeling healthy because there is no cancer. I’m not fooling myself, I deserve to feel good.

I have a new appointment to have a new conversation with my doctor. We may decide that some level of treatment will continue, but I won’t be disappointed this time. I have proof that all the work and effort is paying off. I have cause for celebration, but I’m not letting down my guard. 

A lesson learned from my myeloma journey is to not allow myself to get too high or too low. Since my diagnosis I’ve been up and down the roller coaster enough times to prepare for the next big turn or drop. For now my arms are raised high, I have a big smile on my face and I’m ready for whatever comes next. 

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Photo Credit: (c) 2019 Mark Pouley.

My family closed out 2019 making a trip to New York. For a week I set aside being a myeloma patient as we went all-in as tourists enjoying all the sights, sounds, and tastes of the “Big Apple.”

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