Primary refractory dbcl

Hi everyone, good to hear some progress is being made, but this is often 2 steps forward and one back - but still progress.

SCT Units are most likely the safest wards in a Hospital due to the treatments used that kill the immune system so be reassured that you will be in safe hands.

This is a good thread that moomy started a few years back Checklist for SCT Unit.

If any of your find out that you are having Melphalan as part of your final conditioning before receiving your Stem Cells have a read as THIS information is rather important.

Remember we are here to help as best as we can.

Hi thought I’d update as given a heads up from my consultant. I’m seeing the Marsden tomorrow however it sounds like my lymphoma is no longer responding to chemotherapy and possibly my only option is Car-t therapy which sounds horrendous. I will update when I know more.

Katherine

Hi Katherine there are a few folks who have been through Car-T in this group.

Just put Car-T in the search tool near the top and have a look.

Do come back and say how things went.

Hi Katherine, I had Car-t at UCLH last August, it’s not as bad as it sounds although some of the side effects can be a bit gruelling. From what I have heard it doesn’t sound as bad as a stem cell transplant. I had to stay in hospital for the full 28 days after my infusion, but I expected that as I was 70 at the time. I have since been hospitalised a few times for infections because of such a low immune system, but just this week started Ivig treatment to boost my immune system. You can look that up on google it explains it a lot better than I can. So far all my Petscans have been clear. Which is a great relief after five years of different chemos.

good luck Lyn x