All of the paths start the same way, getting off prednisone as quickly as possible without triggering a dangerous amount of GVHD. I started the weaning late last week, and I am starting to have a little skin rash at the current dose of alternating 20mg and 10mg daily. The rest of the week will be at 10mg, followed by a transition to 5mg daily. The current weaning schedule will have me completely off prednisone in a couple of weeks, subject to adjustment based on the amount of GVHD.
Taking the prednisone leash off my immune system could slow the progress of the leukemia, or maybe even start to reduce it, though I don't get the feeling that the latter outcome is likely.
Once I am no longer taking prednisone, and if the number of blasts in my marrow is still too high to make a donor lymphocyte infusion worthwhile, there are a couple of promising new chemotherapy protocols that might make sense for me to try. Both treatments involve outpatient visits to the clinic and were described as well tolerated (minimal side effects).
Like weaning myself off prednisone, the chemotherapy might be enough to give my new immune system the upper hand.
If not, and as long as the chemo reduces the number of blasts in the marrow sufficiently, then we might try a donor lymphocyte infusion. A DLI is yet another way to tip the scales in favor of the immune system, again with the risk of triggering too much GVHD. When my sister donated stem cells, the team also collected lymphocytes and froze them, just in case we needed them at some point in the future. I guess it's good to know my medical team was more prepared for a relapse than I was.
Along with a rough plan, we got the following news:
- My platelet count did not fall between Thursday and today, which meant I did not need a transfusion.
- There are no blasts in my peripheral blood, which suggests that the blasts are not proliferating as rapidly as they might.
Keep the good news coming, Joe. Keep fighting -- you never cease to amaze me with your attitude. We will continue to hold you in our thoughts.
ReplyDeleteYour display of strength and positive attitude is certainly a lesson for all of us-and it's what helps you keep fighting the good fight. That, and an amazing support system of family and friends! I hope I see good news with each and every forthcoming post-
ReplyDeleteSue Outlaw
You have so many people pulling for you all over the world. I hope that will continue to give you the strength you need to keep fighting.
ReplyDeleteThank you for keeping us all posted, Joe, and my prayers for you, Jan and the boys will keep coming.
Jana
Go Joe, Go! Sending you our positive thoughts and wishes for the best! T
ReplyDeleteHappy Fourth of July! Here's to freedom and independence and all the resourcess a great nation has to offer the Seeley family ~ the research, pharmacology, and technology to optimize the chances of the best possible outcome at the end of this journey. God bless America!
ReplyDeleteKeep the faith, hope, and joy coming... We're delighted!!
R & R
Do I detect positive signs, Joe? I hope so. We're cheering for you.
ReplyDeleteNever give up, never!
ReplyDeleteJoe,
ReplyDeleteI wish we could all keep the attitude that you about bumps (and mountains) in life that you have. Inspiring, and amazing. Keep it up.
Was just checking in and glad to see the bit of good news! Thank you for continuing to share everything that is going on in such a public forum. You are remarkable.
ReplyDeleteSusan.
Just checked in - glad to hear that the sun is peeking throught the clouds. Stay with it!
ReplyDeleteSarah