Hallo there, for myself I have had stage 4 DLBCL twice in the last 2 years first diagnosed July 2022, remission April 2023, 2nd diagnosis October 2023, remission again May 2024, I've had R-chop, Radiotherapy or chemotherapy (could not be bothered learning the type by then) and lastly Car-T cell therapy, went back to work last year after remission felt ok, this time I'm shattered/fatigued whatever you want to call it, does anyone else suffer with fatigue, I also run but I'm on fumes most of the time .
Hi Jock101 and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis. I am Mike and I help out around our Lymphoma groups.
I don’t have Diffuse large B-cell lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well although I have not had Car-T but have had 2 Allo (donor) SCTs
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated DLBCL support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link below…….
as this group is a safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
…… when the group page opens you will see a [ Black - Click to Join - Banner ] at the bottom of the page, click in this box 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 but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
