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More About Whether To Use Maintenance Therapy From A Multiple Myeloma Patient’s Perspective

Home/More About Whether To Use Maintenance Therapy From A Multiple Myeloma Patient’s Perspective

More About Whether To Use Maintenance Therapy From A Multiple Myeloma Patient’s Perspective

Yesterday I wrote an article about the pros and cons of using maintenance therapy from a patient’s perspective.  Here is an additional point to consider before deciding whether or not to start a long term maintenance therapy program.

There is no question a number of new studies prove maintenance therapy can delay relapse. But where are the studies comparing results from patients using maintenance therapy to those who wait and use the same drugs after relapse?  Who is to say, if you don’t use maintenance and later relapse, that you won’t end-up in the exact same place after resuming chemo then?  Is anyone doing these studies?  I haven’t seen any.  None.

One could even argue a patient would be better off not using chemo until after relapse.  After all, at that point the drugs should be more affective, given the fact their cancer cells have not had a chance to adjust to a low, steady dose of chemotherapy which has been administered over a long period of time.

Instead, you hit the myeloma hard when it returns, knocking the cancer back down.  At that point a patient and their doctor may decide to continue treatment, or to discontinue treatment and “watch and wait” for the patient’s myeloma to return–then hit it again.

As I reminded everyone yesterday, I am not a physician.  But I wouldn’t be surprised that if you picked an arbitrary end point–say three years from the first time a patient achieved a complete (CR) or very good partial response (VGPR)–that two similar patients wouldn’t end up in the very same place! 

At this point, I should pause and remind my readers I chose ongoing maintenance after achieving CR almost three years ago.  I have been on low dose Revlimid with no dexamethasone ever since.

Why?  Advice from my medical oncologists and a group of well respected Mayo myeloma experts.  A suggestion from the IMF’s Dr. Durie in a consult one year ago.  And fear.  Fear of stopping a treatment which was working.  Also, let’s not forget my insurance company continues to pay for the drug–if they didn’t, I would be watching and waiting.  I wouldn’t have had a choice.

That said, how can I recommend a patient not use maintenance therapy?  Side-effects.  Long term risks of developing secondary cancers or other bone marrow/blood disorders.  The cost.  An improved quality of life, relatively drug free.

Wasn’t one of the advantages of undergoing the pain, fatigue, inconvenience and cost of a stem cell transplant (SCT) the hope you would emerge on the other side drug free?  That you wouldn’t need chemotherapy any more–at least for a few years?

If maintenance therapy is so important, why undergo a SCT at all?  Why not just use maintenance and different drug combo’s indefinitely and skip the SCT?

Like I wrote yesterday, “Let me stress there is no right or wrong answer here. The way I look at it, either decision is a good one! Waiting saves money and wear and tear on your body. Maintenance may delay return of the myeloma. It’s a toss up.”

Three years ago, I chose maintenance therapy instead of undergoing a SCT.  Knowing what I know now, I would have stopped taking Revlimid after I achieved CR–then resumed therapy if and when my myeloma returned.

Now, with my myeloma creeping back, I continue on a low dose, maintenance therapy regimen using 10 mg Revlimid, 14 days on and 14 days off.   At this point, it doesn’t make sense to stop–I will be forced to modify and intensify my treatment soon enough.

But I have no regrets.  This is all about buying time and waiting for the next, best option so I/we can live to fight another day. 

Try not to lose too much sleep over your therapy choices.  Weigh the pros and cons, make a decision, remain flexible and adjust as needed.  That’s the best any of us can do!

Feel good and keep smiling!  Pat