Last month ^[1] I promised an update on how I responded to the salvage au­tol­ogous stem cell transplant I underwent in July. The news is good!

Although some active myeloma remains in the occipital lesion at the base of my skull, and in both hips, all lesions have significantly improved. A half dozen other lesions are clear. And the extramedullary plasmacytoma that was growing in the lymph nodes in my groin? Gone!

I had a 0.2 g/dL M-spike going in and coming out of the transplant. But my spe­cial­ist feels that’s of no significance because I now have two different kinds of multiple myeloma. The M-spike is a holdover of a former van­quished clone or clones; he now classifies it as a form of monoclonal gam­mop­athy of undetermined significance (MGUS).

More good news: my bone marrow has responded marvelously. My blood counts are all in the normal range. They haven’t looked this good since well before my first, failed auto transplant back in 2011. This is im­por­tant; my old, tired marrow was having trouble recovering following therapy.

All that remains as a danger to me is a drug-resistant clone locked in my bones. That’s what’s forming the random lesions. Unfortunately, this clone (or clones) doesn’t secrete enough protein for a SPEP test to measure, leaving me at the distinct disadvantage of being a non­secretor. This makes it difficult to join most clinical trials. More ominously, it makes it difficult to tinker with different drug combinations, since the only way to measure progress – or the lack thereof – is by undergoing a PET scan.

Thus far my insurance company has been persuadable to cover the cost of those scans; my last scan was only two months removed from the one I had right before my transplant. But for how long? They denied the first request my doctor made this past time, relenting on appeal. But I can see the day coming where in­sur­ance will only allow one scan every three or four months.

My doctor was very pleased with the results of the first salvage transplant. The first transplant? Yep. He’d like me to come back and repeat the procedure next month. He promises – yes, promises – that the second trans­plant will snuff out any remaining active myeloma from my lesions. He doesn’t know for how long, but he gives it a 90 percent chance he can do it.

Considering he’s seen thousands of myeloma patients over the years, it’s hard to ignore his advice. My doctor did admit I have a most unusual form of myeloma; he’s only seen one or two other cases like mine in almost 30 years. But another transplant? Ouch! I’m still recovering from this one.

Patients who go to the University of Arkansas Medical Center (UAMS) are all too familiar with this process, known as tandem transplants. These back-to-back stem cell transplants, usually three to four months apart, are standard operating procedure for low- to moderate-risk patients there.

My doctor was a myeloma specialist at UAMS for over ten years, so I shouldn’t be surprised that he is rec­om­mending this approach.

So in my mind, the good news from the first transplant deserves an asterisk. But I talked it over with Pattie. Concerns over the lesion in my occipital lobe (if it grows any bigger, it could put pressure on my brain stem, slurring my speech or worse), the fact I’m running out of other drug options, and the difficulty monitoring my response to different drug com­bi­na­tions in real time moving forward makes another transplant our worst, best option.

I do have some advantages going in. No week of testing. Then no week-long stem cell harvest; that really wore me out. I know the drill and the lay of the land. Heck, I already know most of the staff. I’ll be an inpatient this time. No messing around with fancy automated chest ports like the one I had surgically implanted the first time, only to be removed when the lines became infected.

Nope. This time I’ll get a simple PICC line inserted into the inside of my arm. A 15-minute local is all it will take while a tech inserts it. And being an inpatient I won’t need a caregiver around the entire time. My sister, Joan, can drive over from Illinois a few times. Pattie will fly in when I’m ready to come home to help me get organized and safely back to Fernandina Beach on beautiful Amelia Island.

One thing I will change. I’m going to exercise non-stop. I lost five pounds of muscle mass due to inactivity the last time, and I’m already less than 150 pounds. So I’ll be working closely with the physical therapist, doing a lot of walking, squats, and arm exercises using dumbbells.

My biggest challenge: to not look ahead but rather enjoy every day leading up to my second transplant. To appreciate every day I’ve got, and not stress out anticipating the procedure, anxious to “just get it over with.”

Why? Because if it isn’t this unpleasant procedure, it will invariably be something else: a new drug com­bi­na­tion fraught with unpleasant side effects; hard hitting VDT-PACE, requiring hospitalization and losing my hair, yet again; participating in a cutting edge clinical trial, or helping test another new, yet unproven anti-myeloma drug.

So, it won’t be easy, but I’m not looking at this like something to put behind me. After all, it’s three weeks away. And although I’m on light maintenance – 3 mg Pomalyst (pomalidomide), 21 days on and 7 off, along with dex, of course – I’m feeling pretty good. I think I’ll take my dog, Finnegan, and go for a long walk on the beach – still wearing my mask, of course. I’ll be away from home again soon enough.

Feel good and keep smiling!