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Whether Or Not To Use Maintenance Therapy: A Patient’s Perspective

Home/Whether Or Not To Use Maintenance Therapy: A Patient’s Perspective

Whether Or Not To Use Maintenance Therapy: A Patient’s Perspective

As I mentioned in yesterday’s post, maintenance therapy was one of several hot topics at this year’s American Society of Hematology annual meeting in Orlando, Florida last week.  Maintenance therapy is a term which is used to to describe treating a patient with chemotherapy after a stem cell transplant (SCT).   But it can also apply to patients who use chemotherapy for an extended period of time.  For example, I started on 25 mg of Revlimid for 21 days each month, along with 40 mg of dex weekly.  This is called induction therapy. 

The original plan was for me to then undergo a SCT.  But the Rev/dex combo worked so well, my wife, Pattie, and I decided to delay the transplant and stay on Revlimid.  My dose–and the dex–was eventually dropped.  I remain on this same therapy today.  This type of treatment is also considered maintenance. 

So let’s define maintenance therapy as any long term treatment–usually at a lower dose and sometimes administered less frequently–following induction therapy and/or a stem cell transplant.

More and more studies are clearly showing maintenance therapy often extends a patient’s time to relapse, or progression free survival as it is often called.  Here is an example of this from this week’s meetings:  New Data At ASH Supports Using Revlimid As Maintenance Therapy Post SCT.

But there is still very little data showing maintenance therapy actually extends a patient’s life.  This is often termed overall survival or median overall survival.

I hear from patients by phone and e-mail everyday  Their most common questions are when or whether to undergo a SCT, and recently, if they should start or stay on maintenance therapy.

Setting the stem cell transplant question aside for another day, deciding if one should start–or when to stop maintenance therapy–isn’t an easy question!  For example, patients using Revlimid might be concerned about two recent studies showing how long term Revlimid use may lead to a secondary cancer risk. I wrote several articles about this earlier this week:
More About New Revlimid Data Showing Elevated Risks Of Developing Secondary Malignancies With Prolonged Use – Celgene shares plummet on Revlimid malignancy data and Still More About Secondary Cancer Risk From Using Revlimd.

Without overreacting to news like this, it is still difficult to ignore. After all, any reasonable patient might question what effect taking toxic medication month after month might have on their body!  I know I do.

And what about the cost?  Thank God for good insurance, but my 14 monthly capsules of 10 mg Revlimid currently costs over $7100!  Ouch!

To be fair, five of six myeloma experts from four different countries at Friday’s IMF event supports using maintenance therapy. 

I am not a physician, but if my myeloma was stable right now I would not go on maintenance, despite what these experts say.  There may be evidence proving maintenance therapy delays relapse in a majority of patients.  But until we have proof using maintenance also extends our lives significantly–and until staying on chemotherapy for years and years is proven safe–I would wait and enjoy the months/years until relapse relatively drug free. 

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. Its a toss up.

Sorry–not a very satisfying answer.  I will discuss one more angle which may help you make a decision tomorrow.

Feel good and keep smiling!  Pat