Larry’s Medical blog

BIOPSY RESULTS

The biopsy results indicate that the Transplant was successful, putting me in a state of “partial complete remission”. [does that sound like an oxymoron or what?] The results show a successful Transplant that pushed the disease further into remission to a level of 0.4 percent. [for comparison: my initial diagnosis biopsy showed a level of 40%, my post-chemo but pre-transplant was 1%; this post transplant is 0.4%]

PROPOSED FUTURE TREATMENT

As expected, Dr J continued to be skeptical about doing another transplant immediately, and feels that our best choice is going on a “maintenance” program and 1) allow me more time to recover from the Neuropathy, nausea/appetite, and bladder/prostate side effects, 2) expect to do another transplant years from now when the disease emerges from remission and 3) hope for a medical advance that cures the disease in the future. Unfortunately, the neuropathy in my feet limits my maintenance drug choices, so rather than the previous three drug RVD (Revlimid, Valcade, Dexamethasone) cocktail I will just be taking a two drug combo of RD (R& are pills… which means that the RD combo would not involve chemo infusions. That’s kinda nice!). More unfortunately, due to the absence of V from my maintenance regimen, the disease is likely to recur more quickly than if I were getting the complete RVD package. [sigh]

WHAT MAINTENANCE MEANS

Maintenance involves a 3 week cycle of two weeks with the RD chemo drugs, one week without (just like my chemo cycles before, but with lower doses). At the end of each 3 week cycle I get blood work to measure progress and check for recurrence. At the end of every-other cycle (every 6 weeks) I meet with the chemo team to discuss any problems or side effects. The first cycle is set to begin December 21st and Dr J tells us to plan on continuing this maintenance routine for a calendar year.

IN THE MEAN TIME

I am still within the critical “Transplant plus 100 days” window, still immune suppressed, still being very cautious with any travel outside the house or contact with people (I wear a surgical mask in large crowds. I wonder what would happen if I walked into my local bank with that on?!?) I am feeling good and the side effects mentioned in my previous blog postings are gradually improving.

I did manage a brief experimental visit with family at Thanksgiving (with no ill effects, hooray!), have gotten my driving privileges back, and went Christmas shopping by myself for a few hours (small stores, no mall visits). So I am getting back to normal although progress is slow. I expect to be able to visit both Irene and my families at Christmas, but have been advised to wear a mask if there are little kids around and to stay home if there are people with colds or recent illnesses.

That’s the latest news from Hamburg.

-larry

Thanks to all for your blog comments, emails, cards, and phone calls with prayers and encouragement. I cannot express how much those mean to me.
– – –
Transplant recovery continues, still very slowly. The hair on my face is growing back and I shave daily (with a shaver… still can’t use my usual safety razor for fear of a cut and infection). The hair on my head, however, has not resumed growing and all I have up there is the lingering stubble that never fell out during chemo. I was hoping to have hair by Christmas.

Since my last posting we have met with the Chemotherapy Team and had an MRI… but other than that things are pretty “normal”. Irene has returned to work full-time, leaving me home alone all day to fend for myself and prepare my own meals.

Due to my weakened immune system, I still stay in the house all the time. Aside from medical appointments, I have only left the house a few times for other events – one of which was the Gauthier Thanksgiving gathering, which I attended briefly after 1) determining that everyone was healthy and wouldn’t infect me with anything and 2) waiting until they had all finished eating before showing up (due to problems with food sight/smell and nausea). Although I didn’t get a Thanksgiving dinner out of it, I was able to visit with family members whom I had not seen since before my Transplant.

The success of that short Thanksgiving visit raises my comfort level for attending family Christmas gatherings – as long as everybody is healthy I should be able to mingle with the Lirette and Gauthier families.

SIDE EFFECTS

– NEUROPATHY – still have the pain in my feet (numbness/tingling). This is a lingering side effect from my original chemo last summer, and unfortunately may be a factor in determining what treatment and drugs are available to me in the future. (If the experimental chemo drugs gave me this problem, we cannot continue to use these drugs as “maintenance mode” therapy for fear that it will cause even more trouble with my feet.)

– the bladder/prostrate issue. The urology docs are hoping that this problem self-corrects, and there has been some improvement here (albeit slow). Last week’s MRI revealed a small mass in the bladder, which set off a medium panic on my part until the urologists compared last week’s MRI to pre-chemo and pre-TURPS MRIs that showed the same benign mass.

– food, eating, weight loss. My problems with nausea and vomiting at the sight/smell/sound of food has gotten MUCH better. I can eat anything that Irene prepares for dinner, although the portions I eat are still smaller than my pre-transplant appetite. I also prepare my own meals (breakfast, lunch, snacks) in the kitchen, something I could not do when the sight/smell of food sent me running to the bathroom. I have stopped losing weight (yippee!), but have only gained back a pound or two and am still under 140 pounds.

– my general disposition and “chemo brain”. Aside from the Neuropathy (AKA pain) in my feet, I am not in any pain nor taking any pain-related medications. The chemo brain seems to also be getting better, but like everything else very slowly. I’d still like to request “Please return me to my old self.”

NEXT STEPS

Tomorrow (December 5th) I return to UofM for a Bone Marrow Biopsy. The results (probably a week later) of the biopsy will shape the decision on the next Transplant: do another Transplant immediately or wait? Unfortunately, that decision has now been complicated by the Neuropathy problem and the fact that drug side effects may limit the treatments available to me during a remission or maintenance period. Perhaps UofM will recommend a second Transplant immediately rather than wait several years for the disease to emerge from remission. Can my body tolerate another Transplant now? Would I lose more weight? (egads)

Stay tuned…

-larry