I got my first of 4 monthly planned maintenance Arzerra infusions earlier this week but the week before was crazy. I woke up middle of night Thursday with severe left upper arm pain, and wondered if this was heart attack. But no chest pain and pulse normal so decided to wait it out, it disappeared mostly in several hours, but when awoke in AM had what I thought was bone pain in both upper arms and right leg. Discussed with onco fellow and they thought it was my leukemia acting up, I of course along with a fellow employee/doc also a pediatrician had hopes it bespoke of marrow recovery, similar to how those getting Neupogen for stem cell harvest get bone pain. Pain got worse not responding that well to Tylenol and Tramadol but I went to upstate NY with wife to wedding and to see our granddaughters. Next day needed a cane to walk as right leg pain was worse and more localized to my knee (which had acted up after treatments before). I stared my pretreatment steroids (before Arzerra) a bit early to see if helped the knee pain, and there was some effect. Pain in upper arms seemed to be more in the joint also..Had to use platelet-poisoning naproxen or ibuprofen as well to touch the pain, rated as high as 8/10 at times, both drugs which of course could exacerbate bleeding with my usual low platelet count. Very frustrating as the weather was beautiful and I have so many many leaves to rake up around our property but no way I could use a rake or even the tractor pulled lawn sweeper with my pains and aches. Forced to watch college and NFL football in family room on couch all weekend, don't ask how my teams did ;-(
Saw my onco team the Monday AM and with the even higher dose of Decadron the night and morning prior I had no pain in arms or legs or findings on exam...they ran a few tests for arthritis, and had me use oxycodone/acetaminophen rather than an NSAID (to protect my platelets). I had continued pain off and on and decided to keep on Decadron until tests back. Will talk with them again tomorrow. Is it some kind of inlammatory process in my joints due to disease or treatment? Time will tell I guess.
Saw Dr Porter at U Penn yesterday. I have, after all, been needing both red cells and platelets weekly and he is still thinking my marrow may be bothered by treatment effect (even a myelodysplasia almost) as much as a stubbon to respond leukemia. At least my spleen is down and nodes no bigger and WBC counts were running low until the pretreatment Decadron may have pushed them up (and or the crazy inflammatory thing in my joints). Porter wants to do another bone marrow test so we scheduled for next month and we will start looking for unrelated donor. If marrow seems unable to recover as leukemic cells continue to be controlled by maintenance Arzerra. I will need a transplant but Porter would rather I get into to the CAR CD19 trial as a preferrence but not if I have a sick marrow.....
No comments:
Post a Comment