Wow what a year its being.Never expected this to happen to a perfectly healthy young lady..She has been through so much this year what with the chemo and the transplant as she was truly ill.I couldnt even visit as she was isolated.It tears my heart out that i could not help my own child..Her transplant was on new years eve.She is so brave and courageous. My girl had a biopsy last week and we are waiting on the results no doubt to tell us if it has been a success.
Hi again Amanda G and well done navigating across to this corner of the community.
The Stem Cell Transplant (SCT) roller coaster ride is not one you really want to choose but at times the process becomes a necessity. In my case, back in late 2013 I was told that SCT was my only hope and without it I would have a few years....... but here I am living as good a life as any 67 year old can be living. and although my rare type of NHL (first diagnosed in 1999 when I was 43) is incurable our hope is that it's now having a long sleep.
For reference for others looking in your daughter has AML.
What type of SCT did she have?........ was it an Autologous using her own (clean) Stem Cells or was it an Allogeneic using Stem Cells from a matched donor?...... although the process is basically similar there are differences in the post SCT challenges, with an Allo SCT being more challenging at times....... I had two Allo (donour) SCTs with cells from my brother.
In your first post in our New to Community you said that she was at just over day +100. This is often when clinical teams start to check how the cell graft is developing. There is often times that this information may not be clear cut...... as everyone's bone marrow re-grows at different speeds.
I my case my first Allo SCT failed within 6 months..... but my second Allo SCT worked but it was not until 12 months - Day +332 that I was officially told I was in remission and that the graft had worked. Let's look for good news following her biopsy.
My SCTs were not during or post the covid world so my wife was allowed in to see me but honestly there were many days that I was so tired I had no idea she was there....... We live in Inverness but my SCT centre was down in Glasgow so we had to move down and stay locally as it was a 8 hour round trip drive. So it was a difficult time for my wife as she was away from family and friends for a month for my first Allo and 7 weeks for my second.
I also was very ill during my second SCT and actually landed in the Critical Care Unit with heart problems (you can see my story through the link below) but most of the journey is now a memory and if it was not for helping out on the community and most likely will have forgotten a lot.
Always around to chat and this group is a good place just to come and get stuff off your chest ((hugs))
The post SCT journey can be very challenging so it's good that she is getting some support.
So with an Allo SCT using donor cells they will most likely be doing a Bone Marrow Biopsy but will also be doing regular Chimerism Blood Tests for engraftment analysis.
The blood test involves identifying the genetic profiles of the patient and of the donor and then evaluating the extent of mixture in the patient’s blood or bone marrow.
So don't be surprised if she is told that the graft results are not 100% donor cells...... even although I was told I was in remission on day +332 it actually took until 23 months post my second Allo SCT for my Whole Blood Lymphoid and Myeloid Lineages to be 100% Donor.
For that first 23 months my cell mix only had about 50-60% donor cells........ there are things that can be done to help improve this including what's called Donor Lymphocyte Infusion (DLI)..... I had a few DLIs and these are used to help chivy on the bone marrow to continue to develop it's newself and become 100% donour...... but I have talked with many people who have been living normal lives for years post Allo SCT who don't have 100% donor cells.
The post SCT journey can be long and challenging but remember this is a fight for life...... for me it took a good few years (see my full story below) you may find this ongoing thread helpful Life after a SCT - A Survivor's Guide as it covers peoples post SCT experiences.
Always around to chat and answer questions ((hugs))
This is good news and this is the post Allo SCT Journey.
Her old immune system and any remnants of her leukaemia he to be ousted by her new donor immune system, as I said it took about 2 years to achieve it for me ((hugs))
