Peripheral T Cell Lymphoma- nos

Hi Blue70 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your husbands diagnosis.

I am Mike and I help out around our various Lymphoma groups. 

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 I reached Stage 4a in late 2013 at age 58 when my second, also rare (4 in a million)……. with your husbands Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so……. so I most certainly know this journey rather well….. 

…… and yes, I have also had (Donor) Stem Cell Transplant (SCT)….. (Consultants still tend to use the old term Bone Marrow Transplant)…… it’s a long story as I actually had 2 Allo SCTs but this was due to me me being treated for 2 rare types of T-Cell NHLs at the same time (See my story)

I was first diagnosed when our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and as a family we celebrated 9+ years since my last treatment.

I am living a great life and we continue to look forward to what else life has in store first us to enjoy…….. this can be done.

You need to be very very carful as to where you look for information as lots of information is way out of date ….. so your go-to place fir information needs to be the Lymphoma Action website.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

Happy to answer questions and chat ((hugs))

So sorry to hear this. He certainly needs to consult with someone experienced in defeating T-Cell Lymphomas. They are rare and usually aggressive. However, in recent years, much progress has been made against them. One point to consider is that someone survives each and every type of cancer, so there is always hope. In the case of difficult malignancies, one must needs be as involved as possible with the medical team for the best outcome. 

   I have had two variations of T-Cell Lymphoma (PTCL-NOS and Angioimmunoblastic T-Cell Lymphoma) with relapses of each. Ultimately, we expended all reasonable lymphoma drugs and so I moved on to transplant once in my fifth remission. That was in 2015 and there has been no sign of either lymphoma since then.