In June 2020 I was diagnosed with T cell Non-Hodgkins lymphoma. I was 75 years old. I started my treatment in July and after two complete chemo rounds & just before the third I was told I had C M R (complete metabolic remission). I was pleased with the news but had to complete the course of 6 cycles which ended in Nov 20.
In between I have been on a watch list and go for regular 3 monthly check ups with blood tests. In Sept 2021 I found a small lump under my right jaw bone & duely reported it to my consultant. I had a blood test and the cancer is "active". Complete shock as it was just 10 months ago all was well.
Since this episode I have had a full body PET scan and Ultra Sound on the neck/jaw area. They could not find the pea sized 'lump' and therefore there was no biopsy. I am now waiting for my consultants appointment at the end of the month. It is suggested I have strem cell transplant a s a p.
Has any one had a similar experience and has had a relapse soon after completing their chemo. ? Has Stem Cell got a good recovery/prognosis ? Have you heard of alternatives to severe chemo. ?
Any comments, advice or experience would be of great help. Currently I am ignorant of details and outcomes and therefore confused & scared of the future.
Hi CARLIMS sorry for being late in putting up a reply but I did not get an email notification about your post.
I have been on my Cutaneous T-Cell Non Hodgkin’s Lymphoma (Skin Lymphoma) since 1999 and have relapsed a number of times over the first 15 years and as John says I have actually had two Allo (donor) Stem Cell Transplants (SCT) (June 2014 then Oct 2015) achieving remission in Sep 2016. This was my first long term remission in over 17 years.
SCTs have come so far in the many years they have been done, yes some of the treatments can be a challenge but on the whole most people will say that the process was far less demanding then they first thought it would be and the rewards are great.
There are two main types of SCT an Auto SCT uses your own clean Stem Cells and the other type is an Allo SCT where you receive Sten Cells from a matched donor. I had to have an Allo SCT as I could not be put into remission for my clean Stem Cells to be harvested is my big brother turned out to be a match so he saved my life.
As John says we have a dedicated Stem cell transplant group where you can meet others and you may want to look at this thread SCT Success Stories where folks treatment stories have been collected.
The bottom line (you can see my story by hitting my community Thehighlander) is without SCT I would have been wearing my wooden suit 5 or so years back but I am now sitting talking to you having been in remission for over 5 years and on the whole doing great…… so from my point of view I have no regrets going for SCT.
Happy to talk more.
Hi again Lim CARLIMS, understanding is half the battle so start getting your thoughts down on paper, your top questions as to the what’s, why’s, where’s and when.
Happy to help more from a position of having my two Allo SCT ‘T’ shirts.
