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Myeloma Lessons: Decisions, Decisions

By: Andrew Gordon; Published: February 6, 2016 @ 2:26 pm | Comments Disabled

From the minute a person is diag­nosed with multiple myeloma, he or she is faced with a never-ending series of decisions. Because there are so many ways to approach treat­ment of the disease, and no consensus among experts on what approach to use, at the end of the day we must make these decisions for our­selves.

As myeloma research advances with the develop­ment of new drugs, new treat­ment combi­na­tions, and new studies on the efficacy of trans­planta­tion, these decisions become even more diffi­cult. After all, when the choices are limited, it’s easier than when they multiply.

In the two and half years since my diagnosis, I have managed to negotiate my way through decisions re­gard­ing induction, transplantation, and main­te­nance. The results have been good, so I have no regrets.

But now another decision is looming.

January 28 was the two-year anniversary of my stem cell transplant. Assuming, as my doctor and I have con­cluded, that the M-spike that still shows up on my tests is secondary MGUS, then I have been in complete remission since even before my transplant.

Following my transplant, beginning in March of 2014, I started maintenance therapy with Revlimid [1] (lena­lido­mide). While I was concerned about the increased risk of secondary cancers from Revlimid, I was convinced that this risk was outweighed by the benefit of maintenance therapy. But my doctor, like many myeloma experts, generally recommends only two years of maintenance – especially for patients who are in complete remission.

And yet there are some studies that suggest continuous treatment until progression is the way to go.

Until recently, I was of a mind to simply continue with the Revlimid. I have had minimal side effects and the cost is mostly covered by insurance, so why stop?

But a conversation with my oncologist in November has me re-examining the issue.

He suggested that he sees no reason to continue the maintenance treatment, and some good reasons to take a break.

Although the rates of secondary cancer for myeloma patients who do and don’t take Revlimid are low, it is inescapable that taking Revlimid approximately doubles the risk. And while the side effects may by tolerable, who knows how much better you will feel once the drug is out of your system.

Finally, for those in remission, there is no way to know if the Revlimid is keeping you there or if you can have a lengthy drug holiday. If you start to come out of remission, it likely will be gradual, leaving plenty of oppor­tunity to re-start treatment – whether with Revlimid or one of the many new drug options now available.

In an odd way, this decision is more difficult than the ones I have faced so far.

When I was first diagnosed, I felt terrible. I was severely anemic and had serious bone pain. So starting aggressive induction therapy with Velcade (bortezomib), Revlimid, and dexamethasone was an easy choice.

Although the induction treatment was very effective at wiping out the myeloma, I still had some bone pain, and I became convinced that a transplant was the best next step.

The decision to start maintenance was pretty easy, too, since I tolerated Revlimid well.

But now I am unsure which way to go.

I feel great. I can do most of what I want to do with a minimum of discomfort. So why change?

I believe in momentum. When things are rolling along in the right direction, just ride that wave as long as you can.

Plus, I am a bit superstitious. If I do things a certain way and the results are good, I will keep doing it that way – in many cases for decades.

Always put the right shoe/sock on first. Shirt before pants. You get the picture.

I am nothing if not set in my ways – because they work, and I find comfort in routine.

The Revlimid is, or at least may be, working, so I am not anxious to tempt fate.

But the other side of the coin is that, as mentioned earlier, the drug is not without risk.

And although I feel pretty good, who knows? Once I am drug free for a while, I might feel even better.

I realize I may be tempting fate by even talking about this now, two months in advance of the two-year mark. (Remember: I'm superstitious.) But I feel a need to make a decision.

Some decisions are easy. After analyzing all of the facts, the way to go is relatively clear. Other times there is no clear choice. When you are faced with a lack of clarity, the only thing to do is to follow your gut.

Originally I was leaning toward continuing maintenance beyond two years. Now I am leaning the other way.

No need to make a decision today. But soon enough, the moment will be upon me.

Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here [2].

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


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URLs in this post:

[1] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[2] here: https://myelomabeacon.org/author/andrew-gordon/

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