Hi, Chris--just read through all the responses so it looks like you are recuperating from CAR-T. I had CAR-T in October and am feeling very good. My white blood cells are still low so I have to avoid crowds or people who are sick. That's all ok. I walk a lot and that is a treat because I was very weak before the CAR-T.
Good luck!

Hello JaniceNepo,
Congratualtions on selling your home! I hope the condo does help improve things for you. I am still not sure how replies to email works here, lol, so I hope I'm not repeating too much in this thread.

I did have a bit of a hard time right after CAR-T but now 45 days after I'm feeling good. Energy level is coming back and I'm out every day walking our dog and fiddling in the veggie gardens. My WBC and Neutrophils continue to be low (they have been since my initial diagnosis) and I've started with booster injections to see if they help me get past the Neutropenia. Both were down to just about 0 after CAR-T for a few days. Dr's said it was all anticipated and I was on antibiotics until the counts came back. As for CAR-T itself, I did have fevers starting the following day (no hallucinations!). Fevers were on/off for an over a week and I did receive 2 infusions to deal with CRS. I slept quite a bit. Nurses test you each day and have you write something down, so memory and cognitive skills are tested at least twice a day. It's a tough call to go through with it or not. Now that the hard part is done for me, I'm glad I went through it. Sorry for rambling, feel free to ask any questions.

Chris

Hi Chris
Yes I did a Car T about 3 yrs ago. When you first reseach it the info can be scary but alot of improvements have happened since then. One important thing is they finally found a drug to counteract the negative side effects. I was able to go home after 5 days with no issues at 1st it was awesome. It killed both Lymphomas leaving no trace unfortunately in the end it failed 90 days later but the good news is there has been no trace of my original cancer. It is a very good treatment when it works. Wishing you the best .

Hi Mary, So happy to hear you are doing well after CAR-T. We're are both in the same boat regarding our immune system. I am like you and avoiding crowds, masking up when needed. I am on and off Nivestym to boost my counts. Dr's are saying it may just take a while for the system to rebound. Take Care!

I had CAR-T in March 2022, I had side effects that gave me a 2 day hospital stay. I have been in remission for over 1 year. My last PetScan showed something but it doesn't look like lymphoma. My lymphoma team #mdanderson thinks it muscular injury so I'm to have a follow up scan in June, so we shall see. CAR-T is painless but a little scary but it has been the best treatment for me. Good luck in your treatment.