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Myeloma, Party Of Two: What’s Behind Door #4?

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Published: Jun 27, 2018 7:25 pm

Lately, I’ve been thinking about how myeloma treat­ment is like being a contestant on a game show. You never know what’s lurking behind the screens once you get called up from the audience. It could be a new car, or it could be a “wah-wah-wah.”

Today, my husband Daniel com­pleted his 3rd cycle of Kyprolis (car­filz­o­mib), Revlimid (lena­lido­mide), and dexa­meth­a­sone (Decadron) for his multiple myeloma. In a week, he will have his next round of myeloma labs, and then we’ll meet with his myeloma specialist to discuss his progress. That’s when we’ll find out what’s behind “Door #4.”

Last month, we learned that Daniel had “only” achieved a partial response to ther­apy after com­plet­ing two cycles of his treat­ment. This month, after the completion of his third cycle, we will find out whether he has achieved a com­plete response.

Did you catch that? Only a partial response. When discussing his results with others, Daniel called it “mixed news.” He was concerned that this might indicate that the treat­ment wasn’t work­ing as well for him as we need.

The good news is that Daniel has already reached a partial response, which is the required minimum for him to be a can­di­date for the au­tol­o­gous stem cell trans­plant that his care team is planning for him in August. Also, as his stem cell specialist explained, while a deeper response is desired, less than 15 per­cent of his patients achieve a stringent com­plete response. So why are com­plete responses and stringent com­plete responses the goal? According to our specialist, some studies have shown that patients who achieve a com­plete response to ther­apy are more likely to have longer pro­gres­sion-free survival after stem cell trans­plant.

We’re into the sixth year with Daniel’s myeloma specialist, and we’ve learned to read her pretty well. Today, she is as calm and measured as always, but we sense her concern and we’re grateful for it. She has already come up with a plan for the fourth cycle of Daniel’s treat­ment, in case he needs it. To encourage a deeper response prior to trans­plant, she has requested pre-approval for Darzalex (dara­tu­mu­mab) from our insurance com­pany. It would be added to his current treat­ment cocktail if his myeloma labs do not show a deep enough response after his third cycle. The thinking is that between the Kyprolis (a proteasome inhibitor), and Revlimid (an immuno­modu­la­tory agent), dexa­meth­a­sone (a corticosteroid), and Darzalex (a mono­clonal anti­body), that this multi-pronged ap­proach might drive better results in com­bi­na­tion.

If he has not achieved a com­plete response and he is approved for the addi­tion of Darzalex to his treat­ment cocktail, our infusion time for his ther­apy increases another seven hours for the first infusion and about five hours for future infusions. This is on top of the 2.5-hour infusion of his current treat­ment that he receives twice a week.

Most days we find ourselves at the hospital for most of the day when he receives treat­ment because it takes so much time for his blood to be drawn and then analyzed prior to his infusion. Two- to four-hour waits are not uncommon for us, so by the time we get back to the treat­ment area for his infusion, it’s a long day. With Darzalex, it sounds like it will be even longer. I may need to invest in some noise canceling headphones and strategies to combat restlessness for my good “patient,” but all of that is a great bargain if we’re getting a com­plete response in exchange.

I understand that these end-of-cycle markers are just one of several mile­stones to come. As many readers have already ex­peri­enced, the final measure of response depth will be made after Daniel’s stem cell trans­plant. However, it hasn’t escaped our notice that these end-of-cycle markers measuring his response to treat­ment are guiding his treat­ment decisions, and they definitely have us thinking about the implications.

We hope that a stringent com­plete response is awaiting him at the end of all this and that we will have at least five years of pro­gres­sion-free survival before he has to do this again. By that time, who knows, the entire treat­ment landscape may have changed. Hopefully we’ll have found an easier way to treat this disease, if not cure it.

So, here we are waiting for next week. It never gets boring on this myeloma game show. We’re spinning the wheel, awaiting what’s behind “Door #4,” and hoping that it’s a com­plete response. I’m just glad that we get to play the game where we do, and that his specialist keeps the game plans coming.

Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diag­nosed with smol­der­ing myeloma in 2012 after initially being told he had MGUS. You can view a list of her pre­vi­ous­ly published columns here.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .

Photo of Tabitha Tow Burns, monthly columnist at The Myeloma Beacon.
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7 Comments »

  • Sandy said:

    Thank you for sharing this column. I was diagnosed with smouldering multiple myeloma this past September, which progressed to Stage 1 in March. I am currently finishing up my third round of treatment and will be meeting with my myeloma specialist in two weeks I to find out when my bone marrow transplant will happen. My husband has been with me every step of the way, which is difficult for me. Thank you for giving me the caregiver perspective. It has helped me be more open with my husband.

  • Susan Mandel said:

    It took me four cycles of induction therapy before I achieved a complete response, so hang in there. A partial response at this point is always good news. :)

  • Tabitha said:

    Thank you Sandy and Susan for your kind comments. Sandy, good luck with your upcoming transplant! How wonderful that you have your husband there to support you throughout this process! I'm glad that this column gives you insight into the caregiver's perspective, and I wish you both well as you face this together.

    Susan, thanks so much for sharing about your response to induction therapy. We're keeping our fingers crossed and hoping for that complete response, if not with next week's labs, then by the end of cycle four, for sure. Thanks for the encouragement to "keep the faith" and expect good results!

  • Marjorie Smith said:

    Dear Tabitha,

    Thanks so much for your column. I really hope for good news for you. We also waited a while for a complete response. I seem to remember that we worried more about the depth of response than our doctor did. He seemed to be confident that it would become deeper in time. I hope that you’re both doing as well as possible and managing to enjoy some calm times together. Every best wish.

  • Eric said:

    Take one day at a time. You add a whole layer of anxiety by doing more than that

  • Annamaria said:

    As with many other aspects of this disease, not all doctors agree about the importance of a complete response with regard to relapse. I had my transplant in a hospital where the main oncologist used to say, “It is better to have a partial response that lasts a long time, than a complete one that does not last long”.

    I had a very good partial response (VGPR). I relapsed after just over two years. Because of a complication in the bureaucracy, I was given Revlimid, which I had never taken before, three months after I should have been. While I was waiting, I had it rough: hospitals, transfusions, amyloidosis, you name it. But after just two weeks, I was on the mend. I bet I could have been spared the suffering if the Revlimid had been given straight away.

    Now I have been in remission for three years, and, yes, strange enough, last year my peak diminished. I am still in VGPR. Conclusion? The usual one: every person and every case is different, and that seems to matter more than the degree of response.

  • Patty Nolan Bodin said:

    Thank you for sharing the details of Daniel’s care and treatment. As you mentioned, many of us can identify with your experience. Those initial months of blood tests and treatments can be somewhat frustrating because everyone responds differently to treatment. We hope the addition of Darzalex gets Daniel where he needs to be for his stem cell transplant. My husband had his stem cell transplant three years next month and continues on maintenance therapy of Revlimid, dexamethasone, and Empliciti. He is still minimum residual disease (MRD) negative. Best wishes for Daniel’s care and treatment.