I am a 48y/o male diagnosed with stage 3D Angioimmunoblastic Lymphoma (AITL) in May 2021. I have had 6 rounds of CHOP chemotherapy and am currently in full remission. There is not a great deal of research regarding the benefit of having a Stem Cell Transplant for AITL patients but the general consensus amongst experts seems to be to have it. I would be very grateful and It would be really helpful to hear about your experiences of SCT, good or bad, to help me reach a better informed decision, including from those who decided not to have one. Much thanks, Paul
Hi Paul and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our blood cancer groups.
I was diagnosed way back in 1999 with a rare, incurable and hard to treat skin Non Hodgkin’s Lymphoma Stage 4a and although my NHL ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but did include 2 Allo (donor) Stem Cell Transplants in June 2014 then Oct 2015.
Stem Cell Transplant is basically the same regardless what type of blood cancer you come from. My story is rather long and complicated but you can see it if you hit my community name Thehighlander.
I was one of the early ones with my rare type of NHL to have an Allo SCT and for me it was a last roll of the dice point in my life......... but I achieved remission back in 2016 for the first time in over 17 years and I am doing great........ but I will say that SCT is not a walk in the park but is do-able.
I see you have joined our Stem cell transplant group, this is the place where most folks who have been or are on the SCT Magical Mystery Tour hangout and talk.
You may find this thread SCT Success Stories in the SCT Group helpful also.
Happy to talk more on this thread or why not put up a post in the SCT Group.
Hi Paul…. It is all about the balance between the positives and negatives.
For me it was a simple choice - take the chance and hope it worked or go into a palliative care plan that would give me about 2-3 years as there were no other treatments as I had used them all up.
I am now 4-5 years past that deadline and living a great life, in full metabolic remission with no evidence of the very bad skin and tumour problems I suffered for 15-16 years.
I am not cured and I may well relapse but the further out from my second Allo SCT I get, the more my consultants words are achieved “Mike our hope is you die with your condition not because of it”
Having had a look through the info on the excellent Lymphoma Action site about your type of NHL looking for a cure from SCT my be very optimistic, but long term remission would be achievable.
I also noticed that when it comes to SCT the first line would be an Auto SCT where your clean Stem Cells are harvested and after some conditioning treatments your immune system is taken down and your ‘clean’ cells are given back and your all new immune system grows.
The recovery and post SCT left overs from an Auto SCT is much much better than going through an Allo (donor) SCT as there are inherent dangers due to the donor cells. But an Allo SCT could also be used in the future should it be needed.
Happy to talk more.
lymphoma-action.org.uk/.../angioimmunoblastic-t-cell-lymphoma-aitl-and
Hi and welcome to this corner to the Community.
Totally comfortable talking about the process but you may want to have a look around and post in our dedicated Stem cell transplant group as this is the place where most folks who have been or are on the SCT journey hang out.
You can also hit our community names and see some of our back stories.
What is SCT like? it’s a journey that can be challenging, many days/nights in hospital, full of bumps in the road…… but for me it saved my life and get me into remission in Sept 2016 for the first time in over 17 years 
Happy to answer questions
