Boyfriend diagnosed with Hepatosplenic T-cell Lymphoma

Hi Charlotteanne and a warm welcome to this corner of the Community although I am sorry to hear about your boyfriends diagnosis. I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed way back in 1999 with a different type of rare T-Cell Non Hodgkin’s Lymphoma (Stage 4a) so although my T-Cell ‘type’ is different I do appreciate the challenges of this journey rather well.

There are a number of rare Types of T-cell lymphoma and this brings the challenges of treatment but Stem Cell Transplant (SCT) is an amazing tool. I have had 2 Allogeneic (donour) Stem Cell Transplants (June 2014 then Oct 2015) and I am now into my 6th year in full remission..... so this can be done.

We actually do have a dedicated Stem cell transplant group where you can connect with other people from various blood cancers who have navigated the SCT roller coaster. Even the rarest blood cancers can be treated successfully with SCT so there is lots of hope.

Always around to help more or just to chat ((hugs))

Charlotte,

From the States, so sorry to hear of this burden. The rarity does not help when one is searching for fellow patients. A stem cell transplant is normally administered with what is called "curative intent." Anecdotally, at 63, I had a half-match transplant, as that was my only choice. At the time, I had two T-cell lymphomas (PTCL-NOS + AITL), plus MDS in my marrow from years of therapy. Long story short, I am 7 years post-transplant, 7 years in remission from both lymphomas, and 5 years in remission from the MDS. Therefore, in my case at least, it may be seen that there is more hope than ever in the fight against these rare lymphomas. Considerable progress has been made in the past 15 years or so, rather fortuitously coinciding with my initial diagnosis. I lost father and two aunts to various cancers, so was actually expecting it at some point. So, chin up, as there is much hope.