Before I get started, I want to share good news about my ongoing myeloma therapy.

If you recall, after a recent relapse, my doctors and I had decided to try adding Revlimid ^[1] (lenalidomide) to my doublet of Velcade ^[2] (bortezomib) and dexa­meth­a­sone ^[3] (Decadron) one last time, hoping it might still work.  Although it has only been two months, the combination does seem to be helping; my M-spike has dropped from 0.5 g/dL down to 0.4 g/dL, or 20 percent.

But enough about me!

I recently heard from a fellow myeloma patient with good news.

Seemingly out of treatment options, his doctors had admitted that there wasn’t anything more they could do for him.  He got the dreaded ‘go home and get your affairs in order’ talk.

Unwilling to accept his untimely end, my friend sought out a doctor that might be willing to think outside the box.  The good news?  He found one – and the therapy they tried is working!

Was it a new, top secret drug without a name?  Or a cutting-edge clinical trial?  Nope.  His new medical team suggested adding a drug that has been around for decades, Treanda ^[4] (bendamustine), to a failing combination of Kyprolis ^[5] (carfilzomib), Pomalyst ^[6] (pomalidomide), cyclophosphamide ^[7] (Cytoxan) and dex­a­meth­a­sone.

Who could have predicted that a drug rarely used for myeloma could make such a difference, especially when two of the other drugs are new and were only approved by the U.S. Food and Drug Administration recently?  How exciting!  And the even better news?  It turns out that the unlikely combination has now been working for almost a year.  An example of how tweaking therapies just a bit can pay off big time!

A few weeks ago, The Beacon ran an article about extramedullary disease ^[8] (myeloma tumors that occur out­side bone in soft tissue).  Apparently, these are more difficult to treat because immunomodulatory drugs (tha­lido­mide ^[9] [Thalomid], Revlimid and Pomalyst) and proteasome inhibitors (Velcade and Kyprolis) work best in the bone marrow.  Patients running out of treatment options – or facing unusual cases like extra­med­ul­lary disease – should strongly consider getting a second opinion from an experienced myeloma special­ist, preferably one of the best in the field.

Why?  Because once we get past the Velcade and/or Revlimid stage, a medical oncologist or hematologist just won’t do.  At this point, we need the advice and guidance of someone who works with hundreds of myeloma patients each year.

My friend’s doctors had prescribed the standard of care:  Revlimid-Velcade-dexamethasone induction, a stem cell transplant, and Revlimid maintenance.  And after he relapsed?  Kyprolis and Pomalyst.  All of these drugs are FDA-approved for the treatment of multiple myeloma.  His new doctors tried adding another drug (Treanda) -- one that is approved to treat myeloma in certain European countries and is FDA-approved to treat certain types of leukemia and lymphoma, but not myeloma.  By tweaking his therapy a bit and trying something a little outside of the box, my friend’s new doctors were able to help save his life.

By the time we relapse for a second or third time, treating myeloma becomes more art than science.  I picture several witches standing over a large, black, steaming cauldron, mixing a number of ingredients together in a mysterious brew.  It takes a deft and experienced myeloma specialist to learn from past experi­men­ta­tion, mixing and matching treatment options until they find something that works.

I understand that, at some point, many of us will run out of options.  Sometimes after a long fight, we may not have the strength to battle on.  But even when things seem dire – if you’re up for it – I encourage you to seek advice from outside your health care team.  A new pair of expert eyes may see a new angle that works.

Feel good and keep smiling!