A long time ago, we knew that we wanted my husband, Daniel, to be treated at a major cancer research hospital for his multiple myeloma.  We felt strongly enough about this that we sold our house, packed up our things, and relocated to Houston, Texas so that we could be close to such a center.

If we’ve ever needed a reason to believe that we made a good choice, learn­ing that Daniel’s myeloma was much more difficult to treat than we ex­pec­ted answered that question for us. We would need imaginative solu­tions if his treat­ment was going to be successful.

As you may recall from my last column ^[1], Daniel’s cytogenetic testing indi­cated that he was supposed to be “average risk,” but his myeloma was not responding in the way “average risk” myeloma should. Daniel did not achieve any lasting remission after four cycles of induction ther­apy with Kyprolis (car­filz­o­mib), Revlimid (lena­lido­mide), and dexa­meth­a­sone (Decadron). Then, his myeloma re­lapsed after receiving a com­bined salvage chemo­ther­apy and stem cell mobili­za­tion regi­men that in­cluded cyclo­phos­phamide (Cytoxan), bortezomib (Velcade), doxo­rubicin (Adria­mycin), and dexamethasone (CBAD).

Given that his myeloma progressed during these treat­ments, there was a good chance that we would not get the results we needed from the standard mel­phalan-only stem cell trans­plant. Based upon his disease pro­gres­sion with KRD and CBAD, we needed an outside-the-box ap­proach.

The treat­ment plan? Daniel was enrolled in a clin­i­cal trial that uses a four-drug com­bi­na­tion of Farydak (panobinostat), gemcitabine (Gemzar), busulfan, and mel­phalan instead of the the single-drug, high-dose mel­phalan that normally is admin­istered at the start of the au­tol­o­gous stem cell trans­plant process. In the protocol for this particular trial, all participants would receive the same four-drug regi­men.

We were told that the regi­men being tested in the trial was tough. Two patients had died of sepsis thus far. However, we were assured that Daniel did not have the same comorbidities that they had.

Daniel entered the hospital on Monday, October 1st, and he was given the four-drug com­bi­na­tion regi­men over the course of a week. He was trans­planted with his own stem cells on October 10^th.

Honestly, Daniel has endured suffering that I never thought I’d see in another person. His upper and lower gastro­in­tes­ti­nal issues have been of “biblical” proportions. He had chemo­ther­apy burns that made his skin a crimson red and hot to the touch, like a sunburn, in various places from his head down to the toes and in the most uncomfortable places in between. He developed a red, irri­tat­ing rash called folliculitis over most of his body as well.

He suffered from a severe case of mucositis, a con­di­tion in which sores and blisters coat the throat, mouth, and tongue, making it very painful, if not impossible, to swallow. The mucositis was so bad at one point that Daniel coughed up part of his esophageal lining because his throat and esophagus were so damaged from the intensive chemo­ther­apy.

Even after the mucositis had cleared up, he lost his taste for most food. He had a muted ability to taste sweet things, but that wasn’t always to his advantage either, since many sweet tastes made him nauseated, as did many smells.

Over the past six weeks, Daniel has lost 46 pounds. He is able to drink meal replacement shakes, and he has just started being able to eat some raw foods and salad. He still can’t tolerate meat or cooked foods, which taste acrid to his palate. We joke with each other that I’d be a lot better off if I just ate what he ate, so we could both be getting skinny!

At the time of this column, we are back at home and on Day +33. Last week his myeloma labs were run for the first time since his stem cell trans­plant. We were holding our breath for a com­plete remission. We didn’t get it. We didn’t get a partial remission either. Thus far, Daniel’s serum protein electrophoresis shows a slight decrease in his M-spike from 2.2 g/dL (22 g/l), which is what it was before his stem cell trans­plant, to 2.0 g/dL. They call this “stable disease,” his specialist said, but the name felt like a consolation term that you use with patients instead of calling it a “failed response.”

I am still trying to wrap my head around what this means. How could induction ther­apy, a com­bined chemo­ther­apy-mobilization regi­men, and a stem cell trans­plant that in­cluded “everything but the kitchen sink” not work on his myeloma, which is supposed to be average risk with t(11:14) markers? I was shell-shocked. When we got the news, everything stopped for me.

I have read there may be chromosomal markers that myeloma researchers haven’t identified yet. I wonder if Dan has some unresearched, resistant strain of this cancer? I also thought about a clin­i­cal trial he was in several years ago for smol­der­ing myeloma patients. It was a Phase 2 study of a peptide vaccine called PVX-410. After being on that drug, his myeloma largely did not grow for a year. Is it possible that something in that vaccine is now making his myeloma resistant to these ther­a­pies?

Of course, the impact of the four-drug regi­men Daniel received in October is still ongoing, Daniel’s stem cell trans­plant doctor told us. It is possible that Daniel's M-spike will con­tinue to decline over the next several months. However, his doctors aren’t waiting to see what that looks like.

We see Daniel’s myeloma specialist on December 5^th. We will partner with Daniel’s stem cell trans­plant specialist and his myeloma team to plan his main­te­nance treat­ment. We were told that Daniel’s main­te­nance will likely con­tain several myeloma drugs, not just one, since he has yet to reach a sustained remission.

I wonder which medications they will recommend for main­te­nance, since Revlimid, the only known drug to show any positive impact on his myeloma so far, gave him blood clots. Once his myeloma begins to rise again, I am skeptical of what another stem cell trans­plant could do for him after he did not achieve a response from the first one, especially given the multiple drugs it involved. I wonder if we have burned through enough lines of ther­apy already to qualify for a CAR T-cell drug trial.

When I look back over this journey that we began this spring, it has been a long road. I’ve seen Daniel pass out twice where medical staff rushed in with emergency response carts like a scene from a medical drama on TV. We’ve rushed him to the emergency room with blood clots, kidney stones, and high fevers. He’s been hospitalized at least six times since March, and we’ve sat in a treat­ment room and looked for the silver lining in more bad news than I can count. How many times can you bear witness to the earth shattering and not be changed? How odd to ex­peri­ence these little traumas, and then just walk out of that treat­ment room and carry on as though it’s an entirely average day!

When I look back over this year, I will try to not remember all the little traumas. I will remember the carrying on. And I hope to remember that we found a way to get Daniel into remission.