Connect
Starting pre-tests for CAR-T infusion for multiple myeloma
I am just starting my pretests for my car t infusion on March 26. at OHSU. It is hard to not know what my reaction will be. I am staying positive, and I have good support.
Like
Helpful
HugInterested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
Connect
@4health4bonnie, how are you doing? Got an update for us?
Im in day 19 now. I did have crs starting on the seventh day. I had high fevers for 24 hours snd was in the hospital for five days. I have had other symptoms, but nothing that would hospitalize me. My main thing is fatigue. My neutrophils are coming up. Im hoping I will be free of any other major symptoms. Im just tsking each day as it comes.
-
Like -
Helpful -
Hug
1 ReactionHi @4health4bonnie So happy to see you here this morning! It’s great that you’re doing well and recovery is progressing steadily, especially with your neutrophils coming up! Fatigue will most likely be your buddy for a while yet. There’s no rushing that part. You’ll find your stamina slowly increases every week. Are you keeping a journal of the highs and lows?
No journal. My neutrophils and platelets took a real dip. I guess this is not unusual the third week. Im extremely tired. Growth factor helps with these things, so feeling better today. Hoping my bine marrow can start making neutrophils soon!
It’s very normal for neutrophils, platelets and red blood counts to drop quite low during this period. It is called nadir or neutropenia, which is the side-effect of the preconditioning chemo.
In the process of clearing your bone marrow of any cancer cells, the chemo doesn’t discriminate. So other quickly dividing cells may be impacted such as blood cells, hair follicles, mucosal tissue in the mouth and digestive system. However, once your newly infused cells engraft, you’ll start seeing neutorphil counts rising again. From my experience and tales from others, engraftment seems to happen not long after you feel that extreme tiredness and lethargy. Then, boom, like magic those numbers start climbing and you start feeling much better.
It’s so cool when those new cells are infusioned…they flow through the blood stream and magically find these specilialized pores that allow them to enter the bone marrow! Once inside, they begin to set up housekeeping again, churning out new blood products! It’s a fascinating process. So hang in there, I would think you’re getting close!
Are you feeling up to walking around daily?
Im in day 26 now. I hsd a crs reaction the seventh day with high fevers for 24 hours. I was in the hospital for five days. I have had fatigue snd other symptoms, but nothing that would take me back to the hospital. Ive been given growth factor to boost my neutrophils. Looking forward to getting through day 30.