Hi 
I'm new to this part of the forum! Basically I was diagnosed with B-cell ALL in July 2020 and have been undergoing chemotherapy since. My original treatment plan was to receive chemotherapy only following the UKALL14 protocol, however 2 weeks into my maintenance chemotherapy my latest biopsy came back showing my MRD was 0.1%. Unfortunately this is apparently enough to warrant a change in treatment plan :(
I am now being put onto 4 months of immunotherapy Blinatumomab followed by a Stem Cell Transplant. I'm not too worried about the immunotherapy but I am a little scared of the SCT. I don't do well as an inpatient and I've done as well as can be expected through chemotherapy so I'm a little worried I'm going to be stuck in hospital (possibly with no visitors) feeling extremely poorly. I'm also worried about recovery afterwards. I'm not even fully sure about the process.
So in short just wondering if anyone has any stories about their SCT they would be willing to share (good or bad), any tips on how to deal with the long stay in hospital and any recovery tips/stories????
Hope everyone is enjoying summer!
Hi nbck112 and welcome across to this corner of the community.
Going down a SCT route is all about long term benefits outweighing the short term challenges, yes it can be a bind being in a SCT unit (I was in for about 28 days) but remember it is temporary and will pass.
Everyones story will be different and you will find extremes but on the whole most folks will say the process was far less daunting and challenging then they were first told it would be and to expect.
It also depends on the type of SCT you are having as the recovery from an Auto SCT when they harvest your own clean stem cells and return them after some preparation treatments has a quicker recovery and less complications unlike an Allo (donor) SCT where there can be challenges where your body try’s to reject the donor stem cells.
I had two Allo SCTs and a very long story short (see my profile and obviously you can see other group members stories) but back in Dec 2013 my type of NHL (Diagnosed back in 1999) became very aggressive so some strong chemo, radiotherapy and SCT was my only option and if it did not work I would have a few years on the clock……. fast forward to Sep 2016 I was told I was in full metabolic remission (no cure for my type of NHL) for the first time in over 17 years and I am now about 5 years past that 'sell by date', doing great and loving life.
Yes it was a tough journey but I have no regrets embarking on the ride…… I was determined not to allow my cancer define me but for me to take control and look to the future.
We have a thread where someone asked for SCT Success Stories so do have a look.
Do you know what type of SCT has been mentioned?
We are around to chat at any time.
Hi Mike,
Thank you for sharing your experience, from your page it sounds like you've been through a lot!! You're positivity is amazing!
Ive not really had a chance to ask many questions yet, but my doctor has said about testing my brother so I am assuming it is an allo transplant. The thought of that and GvH scares me a bit!! I'm also not sure about the conditioning regime yet but I think they will use radiotherapy (ironically I work as a radiotherapist in the hospital I'm being treated at and have delivered TBI).
Do you mind me asking if you feel very awful afterwards? I'm a bit nervous about being so I'll in hospital which I know sounds weird 
Diagnosed July 2020 with Acute Lymphoblastic Leukaemia
Started UKALL14 0.1% refractory disease noted after consolidation on MRD
Started Blinatumomab August 2021and achieved MRD negative
Disease escaped bone marrow and went to breast
Due to have FLAG-IDA then onto stem cell transplant
Nbk112
If you have looked at my profile you will see that I had TLI as part of my conditioning for my first Allo SCT as far as I know this not the same as TBI…… apart from the very long setting up process and the laying flat for a long time it was ok….. but I have Spinal Osteoarthritis.
I had various periods of GvHD but I will sky’s say that this was a small price to pay for life.
The only reaction I had was to the final chemo for my second Allo SCT but most folks I have talked who have had the same chemo have done ok with it.
If your going to be ill and I have had years of this the best place to be ill is in hospital…. there is a measure of ‘no pain no gain’ in this 
Hi again Scaggette so is it an Auto SCT that is being looked at? ((Hugs))
Hello Highlander! Yes they are looking at ICE then stem cell from his own stem cells. Sorry I dont know the name of that
We were a bit scared and shocked at the time in hospital but your note has helped. X
Hi again Scaggette…… I think the best way to keep your and your husbands ongoing support together is for you to put up a ‘new post’ in this group with a title like ‘Husband heading for an Auto SCT’
Then put a little info in the first post about his condition, what he has been through and what the plan is at the moment then we can put some helpful info into your thread and not totally hijack this thread…… sound like a plan?
Perfect advice. Thank you
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