8/31/15 – I met with Dr. Scott Rowley today to review where I am with the Stem Cell Transplant, the DLI from August 3rd and the recent challenges I have run into. He was very thorough and answered a lot of questions.
For one thing he is thinking that my DLI was not necessarily the driver for the GVHD rash that appeared. Typically a DLI takes longer to bring on GVHD. It is very possible that the rash (and other GVHD symptoms) was coincidental. The DLI will likely start showing its signs in a week or two. In addition there is a plan for me to have a second DLI at the end of September once I am weaned off of the prednisone.
While Dr. Rowley was meeting with me he had a phone conversation with one of my cardiac doctors. The feeling of the cardiac team is that my syncope/passing out/heart issues are not due to a bad heart. They seem to be related to certain events (para influenza, GVHD, etc…). There is no doubt that I have been hit a number of new medications over the past two weeks. There is certainly a level of trial and error that comes into play being everyone seems to have a unique response. Dr. Rowley did make it clear that GVHD is like playing with fire… and I think I can have the burns to show for it.
As far as my blood counts go, my platelets were on the low side. I have an appointment on Thursday, September 3rd to check them again and possibly receive a platelet infusion. All my other blood counts were in pretty good shape.
Since my release from the hospital last week we have been constantly checking my heart rate and blood pressure. For the most part everything has been looking good. The one thing that is a bit of a concern is my ongoing lightheadedness. Sure, it could have to do with my fall from passing out and hitting my head. It could also be the mix of my medications. Maybe it is just me recovering from two unplanned weeks in the hospital.
I have a follow up appointment with Dr. Rowley on Tuesday, September 8th.
So, yeah… with my chemo treatments complete you would think that everything would start moving back to normal, but with DLI now the primary means to fight my MCL things seem to be getting more complicated. There is a high level of enthusiasm with this approach from my doctors. This makes me and my family very hopeful.
Surely there is a future, and your hope will not be cut off.
More to come…