CAR-T Cell Therapy: Introduce yourself and connect with others

Interesting to hear shop516 state that they are waiting for the other shoe to drop. I have had the same feeling. Went through CAR-T in June at Univ. of Kansas Med. and cancer is in total remission. That being said, i know it can come back, and it is sometimes a challenge not to get stuck in that thought. I am really trying to just take one day at a time and celebrate that i am alive.

I just mask up. Along the way someone in the hospital gave me 2 boxes of n95’s. Still going through them. I have pretty much that blood counts are stable now - I just get on with life. If normal is what you are seeking then I wish normal for you - more than anything else.

Yes, actually the last labs looked good, my WBC and lymphocites were still low but the neutrophils are good. I know they also said they will fluctuate as well.

yup, I hear you, Im trying to get back to " normal".
sometimes its hard to live in the moment when youre counts are down and your immune system is shot.
that means not being able to travel or visit with friends, but things are better each day.... they did say it could take up to a year for blood work to reach pre CAR T levels.

Not excited? Well having been through this twice, it’s starting to become routine. And love I find is not something to really get excited about. It just is. There has been so much love and caring in the care for my health.

I just live each moment as it comes. We are not guaranteed the next. So I just live in the presence of “limitless undying love “ to quote John Lennon. It has just been an amazing journey for me. Sorry if I seem blasé.

And back to reality, my red counts are still below normal are igg and igm. Just life. I get my measles vaccine in February.

Happy to see you went ahead with the CAR-T procedure. Now that’s all in the rear view mirror as you’re moving forward!
It’s ok that you don’t seem to be as excited as everyone else. We all process experiences differently! What is important, is that you had a complete positive metabolic response and doing well. Thank you for the update! Hopefully in time you’ll stop listening for the ‘shoe’. ☺️

You mentioned being fatigued yet. That’s all part of recovery for a while. From what other members have stated, it can several months to regain stamina. How are all your blood numbers looking?

Hi Lori.
Thanks for checking in. I actually had my CAR T in April.
had some bumps and nort so good days along the way, but all and all doing pretty well, mostly fatigued.
Had a complete metabolic response, I just seemed to not be as excited as everyone else, always waiting for the other shoe to drop..... but Im getting on with life. hope you are well.

Hi @shop516 I just wanted to stop by this morning to see how you’re doing. It’s been quite a few months since you talked about possibly having CAR-T therapy for your DLBCL. Have you made any decisions for your treatment?

Have CLL/SLL on first go round I did Venetoclax by mouth for a year & 6 infusions of Obinutuzumab during the same time period, in remission since 6/22, unfortunately its starting up again.
Now on Zanubrutinib (just started )

Hi all. I’m new to this site and thank you for your posts.
I’m mom to my adult daughter with Mantle Cell Lymphoma now on Calquence (BTK Inhibitor) to be followed by CAR-T Cell Therapy.
I’m here to learn and be supportive where I can and eventually offer my future insights and experiences as caregiver.