I’m fond of saying, “I still have a number of myeloma ther­a­py op­tions, but none of them are good.” The last part is a re­flec­tion of in­vesti­ga­tional work I’ve done speaking with a number of myeloma experts I know.

For two months, I’ve promised to share which direction my lovely wife, Pattie, and I have decided to go in terms of my next treat­ment. After six months of pros and cons lists, con­ver­sa­tions with readers, family, friends, and other myeloma sur­vivors, we’ve made a decision. We were em­bold­ened after shift­ing through piles of therapy and clinical trial options. In the end, the decision was easy.

I plan to undergo a second, modified autologous stem cell transplant.

Here is a bit of background information: Despite a dropping M-spike (now a barely detectible 0.1 g/dL), I have been experiencing more bone pain than usual lately. That’s disappointing, because the doublet of Pomalyst ^[1] (pomalidomide, Imnovid) and dex had surprisingly put a lid on the pain I was enduring late last fall.

My former myeloma specialist had argued that I had become a nonsecretor, which means that my M-spike was fading and no longer an indicator of how my myeloma was progressing. My new specialist at the Mayo Clinic here in Florida agreed.

So what’s a guy to do? Since I’m still feeling pretty good, I decided to fly up to the University of Iowa for a second opinion from an experienced myeloma specialist who might look at my case differently.

He put me through rigorous testing, including a PET scan, that proved my myeloma was still active, despite my encouraging M-spike.

I’m holding the results in my hand now. It’s clear that Pomalyst and dex had smothered active lesions found in my last PET scan seven months ago.  But now new ones were back – several next to the older ones, one new one in my left femur, and an extramedullary (outside the bone marrow) plasmacytoma in the lymph nodes behind my groin.

The specialist in Iowa reviewed all of the test results and recommended I undergo a modified autologous stem cell transplant, using a combination of thalidomide ^[2] (Thalomid), Velcade ^[3] (bortezomib), and dexa­meth­a­sone ^[4] (Decadron) before, during, and after the transplant. I would then start a beefed up main­te­nance regimen one month after my cells were infused.

There was one unexpected wrinkle, though: He wanted me to try and harvest stem cells, even though I still have between 4 and 5 million on ice at the Mayo Clinic in Rochester, Minnesota.

“Pat, we’ll switch your therapy to Kyprolis, Cytoxan, and dexamethasone for three months. Dropping Pom­a­lyst will make it easier to harvest cells later.”

“But doctor, Pomalyst is what’s working!” I protested. “But it isn’t working,” he responded adamantly. “Your lesions are getting worse, which proves that Pomalyst is no longer effective.”

Hard to argue with that!

I also had some genetic testing done. So what did the results show?

“Those results aren’t back yet,” said the specialist quietly. “But I don’t think it matters. Your biopsy results only showed 1 percent plasma cells; they couldn’t collect enough to run a full genetic panel.”

Considering I have had both sides of my hips radiated, I wasn’t surprised. He suggested I get a biopsy in my sternum after I got home. That sounded fun!

I left Iowa more confused than ever. Most everyone, including various other myeloma experts I had spoken with, had advised me not to transplant.

I wrangled an unscheduled meeting with my myeloma specialist at home the week after returning from Iowa. I explained how I was intrigued by the modified transplant option, but I didn’t want to be that far from home.

My doctor surprised me. I expected him to argue for the incremental approach (my words; I believe the word doctors use is sequential), tweak­ing different drug combinations to help keep me alive. Instead, he jumped on the transplant suggestion, recommending I do it! “Go get the transplant, then come back here, and we’ll implement the consolidation and maintenance therapy recommendations.”

“But doctor, can’t you do the modified transplant here?” I asked. “I’ll lean on my insurance company and try to get Mayo approved as a transplant center for me.”

“No, Pat,” he answered. “Outside of a clinical trial, we can’t deviate here from high-dose melphalan only.” Really? That was disappointing.

My medical oncologist also thought it might be a good idea to pursue the modified transplant option. How­ever, both doctors agreed it was “long shot.” My doctor at Mayo even went as far as to give it between a 20 to 30 percent chance of success.

Pretty low! My head was spinning. Now I was really confused.

Still, I now had four myeloma and transplant specialists telling me, “No! Don’t transplant.” My first transplant failed. Why would another work now?

Because we’d approach it differently, adding additional drugs before, during, and after infusion of high-dose melphalan ^[5] (Alkeran), and later my own stem cells – over ten million of them (!), if my Iowa doctor has his way.

Why couldn’t I let the transplant option go?

Honestly, because both of my local doctors implied I might not be around for much more than a year. My doctor at the Mayo Clinic faced it head on. He reminded me that, even if a new drug (or drug combination) works, it won’t work for long. “You know the stats,” he said, quietly.

On the pro transplant side, I have spoken with a number of patients who love the Iowa myeloma specialist so much, they followed him from his previous treatment center to Iowa. Both the myeloma specialist in Iowa and my medical oncologist feel the second transplant is a long shot, but they are willing to give it a try.

I don’t want to transplant. I don’t want to spend what could be three months of the last, best year of my life making myself sick. Pattie and I had previously decided that I would go see a new myeloma specialist who specializes in the sequential treatment approach. I’d try Kyprolis ^[6] (carfilzomib), Cytoxan ^[7] (cyclo­phos­phamide), Doxil ^[8] (doxorubicin liposomal), thalido­mide – anything to help keep me alive long enough for new im­mu­no­ther­a­pies, like elotuzumab ^[9] and daratumumab ^[10], to get approved.  Ixazomib ^[11], SAR65084 ^[12], and ARRY-520 ^[13] shouldn’t be far behind.

Yet it haunted me. My latest consult with an experienced doctor at the University of Florida caused me to pause. He was very concerned about my new extramedullary plasmacytoma. He recommended an even more aggressive course of action; another doctor that wasn’t optimistic about my future.

Out of the blue, the specialist in Iowa called me last week while Pattie and I were walking, and it changed everything. I remembered why I liked him enough to fly up in the first place. He reassured me that the trans­plant and other therapy he planned would resolve all of my active myeloma lesions. He added that almost 50 patients had previously taken the same treatment approach and were all still alive. “Ninety percent chance of success!” He said. He couldn’t tell me how long the transplant would work, but at least I’d be on ag­gres­sive maintenance and have the myeloma back on its heels.

In the end, Pattie thought it was a good idea. We discussed ways she could work and take care of our dog, cats, house, and pool at the same time. We’d have someone come to help – easy to do when you live across the street from the beach!

We made a new, final decision: I would fly up to Iowa for six weeks, harvest stem cells, and do the second transplant.

In the end, the choice was easy because it would shut down my active myeloma, thereby giving me a wider window to try a number of new myeloma therapies over the next couple of years. Two years never sounded so good!

Feel good and keep smiling!