Hello Everyone,
I'm 35, diagnosed with T-cell lymphoblastic lymphoma, reached full morphologic remission after 1st induction. Currently I'm close to finish line of last consolidation block. The doctors originally signed me up to marrow transplant (even though my marrow is 100% healthy). However, I started the discussion with my doctor about pros and cons of this step and now I'm facing a serious dilemma.
My understanding is that my illness is extremely rare (10 cases per year in Poland). Due to the fact that my marrow is heathy, the transplant isn't a must. The doctors wanted me to undergo the procedure to minimize the risk of recurrence. They're unable to measure minimal residual disease which would normally be the main factor here, but in my case there's just no way to do that. The statistics my doctor gave me are as follows:
-after transplant - chance of recurrence: 20-30%, BUT if the sickness does come back, my chances are very slim
-chance of recurrence with no transplant: 40-50%. If the sickness comes back within first two years, my chances are 30% (40% with some non-refundable drug but paying for that wouldn't be a problem), after the two years the chances rise to 50% (60% with the drug)
Considering all the risks and side effects that the transplant brings to the table, I'm swaying towards non-transplant option. Especially the fact that in case of recurrence transplant lowers the survival rate seems very discouraging.
I asked my doctor directly what he'd do were he in my place and he said he doesn't know and that there isn't a bad way to go about it, both solutions are reasonable. I also told entire story to one of the nurses who regularly performs the transplants, the next day she came back to me, said that she thought about my case and that in my place she wouldn't undergo the transplant. My close ones are also all agreeing for the non-transplant option, but of course they respect that this is fully my decision.
I'm basically writing here to gather some feedback from other patients with similar (?) experiences or just lymphoma/leukaemia in general. Any input would be appreciated. Thanks! 
Hi Mike12 and a warm welcome to this corner of the Community although I am sorry to see you joining us.
I am Mike and I help out around our various Lymphoma groups.
I don’t have T-cell lymphoblastic lymphoma but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (CTCL) 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 lymphoma not otherwise specified (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.
Especially as I have had 2 Allogeneic (Donour) Stem Cell Transplants.... in June 2014 then in Oct 2015.
It's important to note that Consultants still use the term Bone Marrow Transplants but are actually referring to a Self (autologous) stem cell transplant or the more demanding Donor (allogeneic) stem cell transplant.
Back in late 2013 my case my only hope was a successful Allogeneic (Donour) Stem Cell Transplants (See my story) so there was one simple choice...... go with the Transplant or go on Palliative care until my time ran out.
T-Cell Lymphomas are rare be we do actually have a dedicated T-cell lymphomas groups where there has been a few folks with T-cell lymphoblastic lymphoma post in the past.
You highlight stats from Poland...... are you in Poland or are you in the UK?
Always around to chat.
Hello Thehighlander, thanks for responding.
You're right, were I to receive the transplant, it'd be allogeneic (so harsher in terms of side effects and possible complications from what I hear).
Do you think I can copy this post to the T-cell lymphoma dedicated group? Maybe there I'll have greater chances of responses since here looks like not much is going on.
Yes, I'm from Warsaw, Poland!
Hi again Mike12 …… do call me Mike.
Yes an Allogeneic SCT can be very demanding but you look at my story my 2 Allo SCTs were completely different.
But this has to be put into prospective that this is a life saying process…… to basically give you an all new immune system including your bone marrow…….. like putting in a new hard drive and software into a computer.
A lot of these types of Blood Cancer are rare so this does result in the lack of people responding but certainly join the dedicated T-cell lymphomas group and put up a post in the group…. we just don’t know who may be looking in.
If you do go ahead with your Allo SCT we do also have a Stem Cell Transplant group as well where people from various types of blood cancer support each other during their SCT….. the process is basically the same regardless the type of blood cancer.
This Community is predominantly UK based as Macmillan Cancer Support is the UKs largest Cancer Support Charity but we often have folks drop in from around the world.
Always around to chat.
