AML relapse BMT advice please!!

Hi again  and welcome across to our little corner. Lots of people from many blood cancer types have come through the group and are indeed living well post SCT.

Have you team talked about what type they are looking at?....... a donor stem cell transplant (allogeneic) PDF here or a stem cell transplants using your own cells (autologous) - PDF here

I have had 2 Allo SCTs (when I was 58 a d 59) and yes it was a challenge but it did the job getting me into ling term remission back in Sep 2016 for the first time in over 17 years and I am doing great (hit my name for my story)

You may want to have a look at this old thread SCT Success Stories

https://community.macmillan.org.uk/cancer_experiences/stem-cell-transplants-for-blood-cancers-forum/f/d6a101d9-6dcb-4437-ad00-0445bd965da4/165641/sct-success-stories#pifragment-13906=1

Always around to talk more ((hugs))

Hi jesjesica

Sorry to hear your bad news, my wife was in the same position, she relapsed with AML just before last Christmas. She is now awaiting transplant at UCLH.

Following her relapse, she has been having injections over a 7 day period 2 x in stomach as outpatient along with venetaclax tablets daily during and following the injections. There is a delay after the 7 day regime of about 2/3 weeks before the next treatment starts. She has had a biopsy in between the 2nd and 3rd episodes of treatment and is once again in remission. Sadly her neutrophils were too low to allow us to go for the SCT consultation last week. Her team think the venetaclax worked too well to suppress her leukaemia and will reduce the dose following her start of treatment again next week.

She has not requires any iv treatment, only the injections and oral medication which appears to be working in the meantime.

She is also taking panaconazole, acciclorvir and tri comixazole to prevent Infection.

I fully understand your worry and anxiety, hang on in their, you are young and that is an advantage 

Hope you get treatment that will put you back into remission as soon as possible.

Please feel free to ask any further questions and I will help as best I can.

Fulhamboy.

Thank you that is very useful. I have a 10/10 match  nearly ready to go. I’m just terrified I won’t go into remission to even have the transplant the consultants always seem so doom and gloom about it all! 

A 10/10 match is a great step in the right direction. My brother was my 10/10 blood type match for both my Allo SCTs.

Oh some consultants do need to get a personality Transplant themselves  but at the same time, SCT is a demanding process but if a late 50s something like me can do it - you can.

It is interesting that as hard as we tried I could not be put into remission as my skin NHL condition was very suborn so we went into both Allo’s with active cancer cells and my old self and and my new cells had a good fight but we got there in the end.

This is all about taking one step at a time and there are lots of steps in the SCT journey ((hugs))

Hi! Thank you for replying ! I’m glad your wife is doing well I am so terrified especially talking about death as such a young age! I think I’m still in shock at the moment as I have only just been told.

Oh! Thank you , every bit of news was in the same tone even the option of death. Last year I had 4 rounds of intensive chemo all as an inpatient so over 4 months as an Inpatient which was pretty gruelling! Wow so you went into the transplant with some cells still left?? 

Jeshesica

Sadly all the risks involved with this treatment have to be aired, yes, I know it must be very frightening but you have to be made aware of all possible risks, it is just what your team have to do.

My wife like you had 4 rounds of intensive inpatient treatment over 6 months including the FLAG Ida drug which was incredibly tough,. She now has to ensure any transfusions are irradiated because of the Flag ida.

It was discovered however that the final round was not really required as she was in remission prior to treatment but the news came in too late and it had started. The way we look at it is, the more preparation they can do to get you in the best place before transplant, the better.

YOU WILL DO THIS, just stay positive and ensure you ask all the questions you need to.

Hopefully it’s just a general thing they say to everyone. That sounds so tough bless her! Thank you I just can’t believe this is happening to me it feels like it’s someone else’s life! 

That's totally understandable, my wife still has trouble sleeping well, waking up regularly thinking (hoping it's just a bad dream). I wish it were.

You are not alone, as said before, you will get through this, there will be setbacks and tough times ahead. You must stay strong and believe.

X

Yes they say this to everyone..... and even although I had heard it all before (June 2014) they went through the same stuff for my second SCT (Oct 2015)

Yes, my type of Skin Non Hodgkin’s Lymphoma is rather rare and basically my body at times was 70% covered in tumours.

There are not many blood cancers where you actually see the tumours without a CT scan so getting the skin clean was very important.

We thought we hard it done before my first SCT but the graft failed within 6 months so for my second we spend a lot of time including 30 Radiotherapy sessions blasting my skin to kill as much of the cancer cells as we could but did not get everything.

The year before, leading up to my first SCT I had 10 sessions of Radiotherapy on all my bodies Lymphoma- nodes and the effects of this treatment lasted for the 16 months into and through my second SCT.

Then we left the Stem Cells to battle it out inside my bonemarrow...... eventually achieving metabolic remission in Sep 2016 but it took until Sep 2017 to achieve Whole Blood Lymphoid and Myeloid Lineages being 100% Donor.

It all amazing but it has been done for many many years and these SCT teams are at the top of their game so you will be in very safe hands.