Hi again everyone,
wish I wasn’t back here needing advice but here we are.
Dad was in complete remission since his SCT in Jan but we got the news yesterday from his 6mth biopsy his mutation was back and his donor cells had dropped from 100% to 85%. 85% itself is good, but it’s the fact it’s dropped that’s concerning. Confusing he is still “technically” in remission, just not completely anymore.
so we are looking at DLIs, his first lot being in 3 weeks time after which we will wait 3months, another BMB and see if they need to do another etc.
we feel fed up, and feels like another blow. Just looking to see if other people had had this and what there experience was.
thanks :-)
Hi again , unfortunately this can happen a lot. I had various DLIs after both my Allo SCTs and some made no difference what so ever but others did the job.
The actual DLI takes minutes, it actually takes longer to put the line in the arm than to have the small amount of Lymphocytes.
You do need to understand that this can trigger GvHD in some, not all folks - it happened to me.
I can understand how difficult this all is but the post SCT journey can be full of bumps in the road...... for a good period of time.
Lets look for this to do the trick ((hugs))
How soon after your first SCT did you have the second? And how many DLIs did you end up having? Sorry for the questions, It really helps hearing other people’s stories.
dad didn’t experience barely any GVHD this time round, so I think we will almost be looking and slightly hoping for some (something manageable of course) so it shows it’s attacking!
I knew it was never going to be an easy road, but he had been doing so well since his SCT so feels so gutting. This is some journey.
thank you so much,
So first DLI was 5 months after my first Allo SCT but made no difference as my graft had failed by mid December 6 months post Allo.
Following my second Allo SCT my first DLI was 4 months post Allo developing skin GvHD then a second DLI 10 months post Allo developing GvHD in bone marrow so Blood transfusions for three - four months..... it was September 2017 - (23 months post Allo) when my Whole Blood Lymphoid and Myeloid Lineages are 100% Donor.
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