So hello all you lovely supportive folks—like many others I too have had some waiting but would also commend the team at my hospital for their consistent and timely approach from the outset of this journey so the waiting has been minimal but still excruciating. I have Type 3b follicular that is transforming so being treated with R-chop as if it’s B cell DCBL so hope I’m on right forum ? Had my first cycle on 19tb dec and next due on 9th Jan. However as well documented here the road has many twists and turns and was recently told I have carcinoma in my thyroid following a scan. Now referred back to surgeon who took out lymph node and looks like I will need surgery to remove-and so the waiting continues lol! Always seems like there are more questions than answers with this lymphoma thing !!!
Hi Jen57 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have DLBCL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Sorry to hear that your low grade Follicular Lymphoma has transformed to DLBCL. Unfortunately transformation of Low-grade non-Hodgkin lymphoma into a High-grade non-Hodgkin lymphoma can happen but on a positive the High Grade can be treated with an aim to cure……. but your FL will always be with you.
I followed a completely different journey with my main chemo (R-EPOCH) being the bigger brother of R-CHOP and honestly I did ok with it all but for me (see the link below to my story) this was just a steppingstone to my two Stem Cell Transplants.
The group is here to help and answer questions as best as we can ((hugs))
