Hello! Im just reposting here as a user kindly let me know this would be the place to link with people who’ve gone through a similar experience to me. Ihave just completed 7 months and 6 chemo sessions of treatment for non-Hodgkin’s lymphoma. Unfortunately my ‘final’ PET scan has revealed that there are still tumours to be eradicated. I have been informed that I am to follow the CAR T-cell therapy route through a leading Birmingham hospital. I’m feeling numb, dazed and confused. Just wondering if anyone could help me with what to expect next - any tips or pointers, please as the journey continues… Many thanks, Flake63
Hi again Flake63 and well done getting this post up.
As I said in your other post I have not had CAR-T but even if it had been available back in 2013-2015 it would have been no use for my type of NHL so I had 2 Allo (donor) Stem Cell Transplants.
There have been a few folks in the group go through CAR-T but folks often move on from the community once they are out the other side of treatment s d get on with life but let’s see who is looking in.
To widen your search for people you may want to look at Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms. I highly recommend these groups as there is nothing better than talking with other who have walked the same journey.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has been through CAR-T and you actually chat through the whole process.
Lymphoma Action have a Lymphoma helpline on 0808 808 5555 open every week day from 10 till 3. This is a safe place to talk this through and get support
