Followers of this blog would know, if they checked their calendar, that in about two days time, my Autologous Stem Cell Transplant was set to begin. Monday the 21st I was scheduled to get my port and begin collecting my own stem cells on the 22nd. That is not going to happen. But we have a new plan. We meet next week with the Allogenic Stem Cell Transplant team and begin planning for that.
Why the Change in Plans?
Among the many tests I underwent in late October was a bone marrow biopsy to check to make sure there was no disease in my bone marrow. Good news: there was not. But they also do a test known as a Rapid Heme Panel, a test developed at Dana-Farber and Brigham and Women's Hospital almost ten years ago. Using the Rapid Heme Panel, we were able to screen my bone marrow sample looking for genetic mutations. They found some, including two mutations that could lead to problems down the road with my bone marrow - problems that I'd like to avoid, like leukemia. Now, just having the mutations, particularly at the relatively low percentage that they were found, doesn't mean that I'm headed for leukemia. But it does mean that if the stem cells continue to accumulate these mutations, it will certainly increase the risk of bone marrow issues down the road.
So now we return to the difference between autologous SCT and allogenic. In an autologous SCT, we would use my own, already damaged stem cells, which would be removed from my body and re-infused after high-dose chemo was done to rid by body of any lingering cancer cells. The question I often got when people asked about the transplant was: Do they do anything with your stem cells before they re-infuse them? And the answer is: no. Short of freezing them and then thawing them to be re-infused, they don't do any "treatment" on the stem cells. Not these days anyway.
So if you're following along, you might see where this is going. If we went forward with an auto SCT, the cells that would be re-infused in me would be my own genetically damaged stem cells, which would likely create more damaged stem cells and increase the risk of bone marrow issues in the future.
In an allogenic stem cell transplant, however, I would be using a donor's healthy stem cells to replace my own. That is now our plan.
Good News or Bad?
The new favorite question these days is: Is this good news or bad? I'd be lying if I said I wasn't a bit panicked when we found out the news on Monday. Allogenic transplant is a more involved process - isolation is more like 100 days instead of 30, and the infection precautions last longer, too. There's also risk of graft versus host disease. But the upside is that the possibility of a cure - of both the aggressive lymphoma and the original follicular lymphoma -- is potentially greater.
What's also important to consider is that if we didn't do this test -- and it wasn't even around when I was first diagnosed 11.5 years ago -- we would have gone through the whole auto SCT process for it likely not to have worked. And that would have been devastating.
One of the biggest challenges is that I had been getting my arms around the idea of the transplant; I had been preparing for it mentally; getting my life ready for the 2-3 months of procedure and recovery. I was ready to get it going and get on the other side of the process.
Now that's all on hold and I'm back in planning mode. I'm not sure how soon it will start but I doubt it will be for a couple months as we need to identify a donor among other things. I hope to know more when I meet with my Allo SCT team on Wednesdays. In the meantime, the boys are coming home from college starting tomorrow, and instead of having chemo by myself for Thanksgiving, I'll be having turkey with all the trimmings with my family. That's pretty good news for now.
--michael
Ps - If you're interested in being a stem cell donor, not necessarily for me, but in general, you can learn more at Be the Match.
