Hi - My wife got dignosed with Nkt Cell Lymphoma in 2023 - she had chemo radiation chemo (gelox). She then got a clear PET scan. Unfortunately she relapsed in October Nkt Cell Lymphoma has spread to skin. She is currently getting chemo GPD regium plan is to get het to allogeneic stem cell transplant. Has any one used this to be cured from NKT CELL LYMPHOMA ? Any good stories on forum. My wife was fit and strong represented her country in crossfit and weightlifting (makes no sense). I am also reading about PD1 immunotherapy (Consultant said maybe we should keep this in back pocket if transplant fails). Any body have experience of Nkt cell lymphoma? John
Hi John Gal1 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your wife........ I am Mike and I help out around our various Lymphoma groups.
I don’t have NK T-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 (Skin) 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 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.
I can also say that I have had 2 Donor (allogeneic) stem cell transplants (Allo SCT for short) using Stem Cells from my big brother.
My first Allo SCT was in June 2014...... but this failed by the end of that year. It was not a surprise as we were trying a new treatment because I was being treated for two types of T-Cell..... But I went back in October 2015 and had my second Allo SCT..... and I remain in remission to this day....... I turned 69 last November and I am living a great life.
My first type of T-Cell is generally seen as being incurable...... but after 16 years of treatment I eventually achieved remission (after my second Allo SCT) that was longer than 9 months before I had to go onto more treatments......... and as my skin is now perfect my Consultant believes that we have put it to sleep for a long time and most likely will not have issues in the future.
My second type of T-Cell was very aggressive...... but the crazy thing about Lymphoma is the more aggressive the Lymphoma the more effective treatments are....... I have never heard the word cured..... it's not actually used much in Lymphoma but again my Consultant believes that we have put it to sleep for a long time and most likely will not have issues in the future.
There have been a few members with NK T-Cell Lymphoma have come through this group over the years so let's see if they are still looking in.
My story is rather complicated See my story as I had to go onto have significant treatments mainly due to me developing a second more aggressive type of T-Cell NHL in late 2013……….. but I am 9 years out from my last treatment I doing great.
Are you in the UK?
Where is your wife being treated?
Any questions just put them up and I will do my best to answer them....... but as a further encouragement our daughters were 14 and 18 when I was first diagnosed…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters.
