So it looks like my battle with this ugly disease is not yet over. As a reminder, at my 4-year, post stem-cell transplant, anniversary, my blood work looked very positive with no m-spike and no trace of the disease. The doc asked that I get an MRI and have a bone marrow biopsy to ensure we’re looking at everything. Well, these tests did their job.
The MRI is identifying three places where the disease seems to be reoccurring. The lower spine (T10) and in the sacral and ischial areas of the pelvis. All of these are faint but seem to be related to the disease making a re-appearance.
The level is so small that it can only be identified in the MRI. The bone marrow biopsy identified 4 in 1000 cells having an issue which wouldn’t necessarily have thrown a flag. Because all my numbers had been so good previously we didn’t order the fiche study which breaks down, by gene, what’s going on in my body. Now that we believe something is there we need the fiche study to better identify the issue and help determine the specific direction we next proceed.
The first step is to do another BMB and his time we also do a PetCT. The PetCT will allow us to identify how “hot” the cancer might be in these areas. Even if not “hot” it doesn’t mean we don’t need to act. The BMB lets us do the fiche that wasn’t done previously. The goal is to spot any abnormalities, on a genome level now that we believe the disease is back. This will allow us to spot any mutations or things that could be causing the disease to come back.
After these two procedures we will look at a new cocktail of drugs with the goal to completely remove the disease again. It took over 4 years for this thing to come back. If we can do the same again there are drugs on the testing circuit now that my doc believes will cure this disease. Essentially this becomes a maintenance disease, not a deadly disease.
We will go back on Zometa (bone strengthener) and will have a cocktail of Revlimid, Daratumumab (aka Darzalex), dex and velcade (if he can get the last approved in conjunction with the others). We will do this for sixth months with no idea of the effect it is having. The level of cancer is so small that it can’t be identified by blood work. After 6 months we will do another BMB and PetCT and evaluate the results.
Why do that now, why not just wait and see if it progresses? I’d rather address it and fight it immediately. I don’t want to see if it grows more — I’d rather just kick its ass now. On Thursday I go in for the second BMB and PetCT but it will be awhile before I get results. After the results I’ll have more insight as to what I do next. At some point in the future I’ll be back on chemo and dealing with steroids. And at some point after that, I’ll have no trace of the disease. And at some point after that, there will be drugs that will be a cure for this awful mess!
For now — soldier on and fight the good fight.