Starting pre-tests for CAR-T infusion for multiple myeloma

@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.

Hi @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.

Lori, How long ago did you have your Car-T? Have you had any long term side effects like hair thinning or ankle swelling?

Hi @jandjerry and welcome to Connect. I didn’t have
CAR-T cell Therapy, but received a bone marrow transplant almost 6 years ago. While the procedures aren’t the same there are some overlapping experiences such as the preconditioning chemo, which can temporary side effects such as all the blood cell numbers to decrease, hair loss, and other side effects. So I can’t really comment on long term hair thinning or ankle swelling.
However, I’m so happy you’ve joined the forum. There’s a small, but growing number of members who have had CAR-T Therapy for numerous conditions. They’re very willing to answer questions and offer support.

I see you already posted a similar question in the CAR-T and joint pain discussion so I’m expecting someone will pop into the conversation to help you out.

Here are a couple more links for you:
CAR-T: Opportunity to Connect
https://connect.mayoclinic.org/discussion/opportunity-to-connect/
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CAR-T cell therapy. Introduce yourself and connect with others:
https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/
When did you have your transplant? Did you have Mulitple Myeloma or another blood condition?

I sm through day 30.
Car t is working! I am about 50 per cent better. In the next few months I hope to be in total remission! My neutrophils are low so I am receiving growth factor shots. Feeling much better.

This is fantastic news, @4health4bonnie! You have no idea how encouraging this update will be for anyone going through CAR-T Cell therapy! Recovery can’t be rushed, which can be frustrating when you want to feel 100% right away. But I think you’re able to really get a sense of your steady daily improvement over the past month, which is awesome! What’s been your most difficult challenge?