Side effects are a multiple myeloma survivor’s per­ma­nent companion.  Oh, they may change from month to month and treat­ment to treat­ment, but one way or an­other, you are forced to deal with them.

Doctors always insist you share any negative side effects (there are posi­tive ones?) with them or their nurse im­me­di­ately.  And early on, your on­col­o­gist may be quick to switch you from one therapy to another in order to avoid serious, de­bil­i­tat­ing side effects like severe skin rashes, crash­ing blood counts, or pe­riph­er­al neu­rop­athy (pain, tingling, or loss of sen­sa­tion in the ex­tremi­ties).

Often merely reducing a dose or how fre­quent­ly you’re dosed may be enough to help.  So by all means, con­sider cutting doses or even switch­ing drugs.  But after six years, I don’t feel like I have that luxury.

We have pretty much run out of drugs to switch to.  Yes, I could try the two newest FDA ap­proved thera­pies for re­lapsed patients, Kyprolis ^[1] (carfilzomib) and Pomalyst ^[2] (pomalidomide).  But that’s it.  After that, my doc­tors are just guess­ing and hop­ing something else will work when they com­bine things together.

I currently take Velcade ^[3] (bortezomib) and dexamethasone ^[4] (Decadron) once a week for four weeks followed by two weeks of rest. And it’s working! But my already significant peripheral neuropathy is slowly getting worse.

It started before my first treatment: a tremor in my hands and some numbness in my feet.  Years of Revlimid ^[5] (lenalidomide) aggravated it to the point I can barely write and my feet are numb.  I had hoped getting off Revlimid would lessen the symptoms, but no luck.

Velcade-induced peripheral neuropathy feels different to me.  So now I have two different kinds of peripheral neuropathy.  Lucky me!  It wasn’t bad at first.  But now it’s becoming progressively worse, especially after therapy late in each cycle.  My muscles become stiff and a bit unresponsive.  Sometimes my entire body tin­gles like I’m a life-size tuning fork.  It was really bad back when my Velcade was infused intravenously.  Sub­cu­ta­ne­ous (subcu or subQ) injections seem to mitigate it quite a bit.  But now even the subcutaneous ad­min­is­tra­tion can’t seem to prevent my peripheral neuropathy from progressing.

I take a number of medications that help.  But that’s not what this column is about.

When I met with my myeloma specialist last week, I admitted that my peripheral neuropathy is getting worse. But with a wink and a nod, we agreed to continue treatment.

Risk versus reward.  The treatment is working.  I don’t want to switch to Kyprolis or Pomalyst until my current treatment stops, so I’m willing to put up with my peripheral neuropathy, and my doctor is willing to look the other way.

And that’s the way I have always approached therapy once I got a feel for what it’s like.  If it ain’t broke, don’t fix it!  There are risks and rewards involved with any myeloma-related therapy.  Think long and hard before dumping a therapy that’s working, even if there are side effects.  Because when you’re out of therapy options, time isn’t on your side.  There are lots of new drugs in the pipeline, but you can't always count on them being ready when you'll need them.

I’m not suggesting you try and live with unbearable pain or remain bedridden as a result of your myeloma therapy.  But for those of you who haven’t been around as long as some of us, you would be surprised what you may be willing to put up with down the line if it helps keep you alive!

Stem cell transplantation, especially donor (allogeneic) transplantation, is the ultimate risk-versus-reward calculation.  So much so, I would like to continue this topic in next month’s column, focusing on stem cell transplant options and how differently I look at the process now.

Until then, feel good and keep smiling!