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.
Proverbs 23:18
More to
come…
2 comments:
Still praying for you through these uncertainties. Let me say that I think GVHD can be very strange. While I had mild classic signs. I also had some strange things happen that I think were GVHD but the Drs might not. The last two months my Eosinophils have been 18. They shrug it off as "it sometimes is GVHD". Yet I feel fine. The sun makes me itch so I don't stay out long and I shouldn't anyway. My fingernails grow out in strange ripples every now and then. Yet all this time, I feel great. I hope you start feeling GREAT soon. I would say that looking back my first GVHD sign was less than two weeks post transplant, but I didn't know it at the time. Don't know how any of this might relate to the DLI but just to say, focus on the positive of it and pray for the minimum. Glad to hear that your heart if good.
Praying,
Janet
Hey Janet,
Thanks again for all your encouragement and prayers. The DLI is necessary for me because I never have had any signs of GVHD. It is basically an infusion of my donor cells that have been saved and frozen for future use. I think there are enough cells for about 3 DLI’s. Crazy as it sounds my woes for this week are more in the form of aches and pains. When I passed out my heart actually stopped and they had to bring me back. In doing so, I am pretty sure they left me with some cracked ribs. But hey, my heart is beating so I shouldn’t complain. Also, my two weeks in the hospital has caused some atrophy in my legs. I am working on building up my leg strength. I can certainly see the GVHD being a crazy ride but, of course, I will battle through.
Thank you,
Rich
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