Day 62 And the Plot Thickens
Just when you think things are going so well .........
Last week I noticed my right shoulder was a little sore. On Friday morning it was real sore. So I began to rub around the shoulder trying to find that sore muscle. Instead, I found a big, and I do mean big, lymph node just below my armpit. It wasn't there, at least not that size, on Thursday.
Well that sent me into a tailspin since that was obviously not good news. At 55 days post transplant, nodes are not suppose to be enlarging. So I tracked down Dr. Hosing and saw her that afternoon. She ordered a biopsy which was done Monday afternoon.
She also sent me to see Dr. Keating, my leukemia doctor, in order to line up a little chemotherapy directed at the offending node. I saw him yesterday, Wednesday. The results of the biopsy were back, but it was obvious that it was transformed large cell lymphoma because of the size and the speed with which it appeared. This transformation has a name, Richter's Transformation. I've talked about it before. It is not good news because this form of large cell lymphoma is very aggressive. That's why I tracked Hosing down so quickly.
The good news is that I still have a successful transplant, with 100% chimerism. I have a fair amount of confirmed skin GvHD which, if kept under control, is a good thing since it is a sign that the new system is actively looking for foreign bodies to attack. Now if it will only direct it's attack on the diseased cells.
My old disease is pretty sneaky, and even though we supposedly killed off all of my old marrow, some disease and/or aberrant DNA has survived. And it is determined not to go down without a fight. So we now have to kill, or at least weaken, this lymphoma so that the new system can finish the job. Much like calling in an air strike to allow the ground troops to advance. We are going to use a high dose of Rituxan, which I am going to start any minute now here in clinic. As you will recall, Rituxan is a monoclonal antibody, not really chemotherapy, that targets specific cells that have the CD20 protein marker of CLL. This should have some immediate effect on the big node as well as other smaller nodes that are present. If it's going to work it will work within a few days. If it doesn't work the next step is to join a phase I study of a drug called Sunesis.
They just hooked up the Rituxan. That's the biggest bag of Rituxan I have ever seen. And I have seen a lot. I'll be here quite a while today taking all that in. That bag sells for about $30,000. And the insurance company takes another hit.
One of the pre-meds they use with Rituxan is Benadryl. They hooked that up about 30 minutes ago, so I'm beginning to get a little loopy. Looks like a nap for me.
5 Comments:
Max, we're praying the Rituxan will be all that is needed to eleminate those nodes and your new stem cells will do the rest. God bless you with peace & hope. H & A.
Immediate prayers lifted - and I will activate the prayer chain too. Teresa
Max,
Thanks for the update. I am glad you were able to spend time with your family over the holidays.
I wish you all the best, I am confident that this will be end up being a minor set back.
John C
Max,
Stay strong. YOUR name is lifted up to the Creator of the Universe from us all. WOW! So, know we're all here for you. Keep us updated on the progress.
Conyers Connection (CC)
Max, thanks so much for keeping us posted. We, and the entire Open Circle crowd, keeep you in our prayers and thoughts often.
This is much like the GA Tech foolball program - it takes a few setbacks to get it right, which I think you folks have done this time. I know the you and the Houston team will "keep the surge going" until this setback is also fixed. Don't worry about the insurance companies - they do fine.
Take care and keep the postings coming - reading them is better than watching TV anytime - especially when BC destroys WFU yesterday.
Charlie
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