Hi . My brother has just gone through Car T cell treatment which sadly has not worked . The next step is a biopsy and a type off immunotherapy. He can’t have any more radiotherapy or chemo . Has anyone else gone through this ? Looking for better news to bolster him up . He’s feeling low and the pain he has obviously doesn’t help .
Hi Hoggy and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your brother and his failed CAR-T. I am Mike and I help out around our Lymphoma groups.
I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with a rather rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from your brothers I do appreciate the challenges of this journey rather well.
The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated
support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support from both patients and caregivers.
To connect with the group click on the “Bold Italic Link” I have created above …… then once the group page opens click in the [ Black - Click to Join - Banner ] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
I will keep an eye open for you in the group and can help you further...... and this will open up your question to a larger amount of people.
