After being first diagnosed October 2018 and having a second relapse within a year and a serious reaction to the chemo, I have been put forward for the new Car-T Cell treatment. I have been to London and had the cells removed so I now have 5 weeks to ‘stay well’ before having the treated cells returned. That part of the treatment can have serious side effects including spending time in intensive care. There also is only a 33% chance of it working, but at half a million £s a throw they wouldn’t do it unless it had a chance of working. Without it I have been told I may have 6 months. Part of me feels lucky that I have been given the chance of this new treatment but knowing the low success rate and the fact that without it this will be my last Christmas gives me a dark sick feeling in the pit of my stomach. I just keep bursting into tears at the most ridiculous things. I dont want the treatment because the side effects sound horrible but I know without it I have just a few months.. I just feel so scared. Thanks for listening.
Hi again Lellynelly, sorry to hear that you have relapsed a few times but good that you have been able to get on CAR-T.
We actually have a few on CAR-T posting in our dedicated Stem cell transplants for blood cancers group...... as CAR-T is in the basic same area as SCT.
Follow the link above and join the group then put up a post introducing yourself to the group and I am sure that the CAR-T folks will pick up on your post.
