Making the decision

Hi Naiad and welcome to this corner of the community.

I don’t have AML but an incurable type of Lymphoma, it’s a long story so hit my community name for my profile.

Back in late 2013 my condition became aggressive and the only route available was an Allo (donor) SCT. Without this I would have a few years ending up on palliative care.

So for me it was a no brainier, yes I have been left with post treatment left over health conditions but I am a good 6 years past my sell by date and living a great life in remission.

I could not be put into remission going into both my Allo SCTs so it was all a role of the dice, yes the second Allo was very hard work but 6 years on it’s all a blurry memory.

Your appointment on Monday will be full on where you will have the ‘Talks’

Our first ‘Talk’ one was indeed challenging and yes, very scary and a lot of the info went over our heads. We were like rabbits caught in head lights as our attention was often focused on the bad things that could happen and we totally missed the good parts.

My first Allo SCT did not work so going through our second ‘Talk’ was no where near as scary as I had the T-Shirt…… apart from “Mike if this does not work we don’t have much tools left in the box”

The ‘Talk’ is where your team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad, very bad and you will be giving your team permission to take you to the point of being open to life threatening infections and side effects……. then bring you back with an ‘All New You’ it all sounds very scary but it is ALL very do-able.

The talk is not there to scare you, but to be honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.

I have talked with many people post SCT and a very high percentage will agree that the SCT process was nowhere near as bad as what was said during the ‘Talk’ and in all the info provided.the main thing people talk about was the boredom

I would recommend that you have two sets of ears as the information can come thick and fast and two people can hear far more than one and its someone to sit and have a cup of coffee with after and talk through what was said, rather then rushing home and not unpacking it.

Even if you agree to go forward you will have to go through a lot of medical tests to double check if you are fit to do the process.

Do come back with any specific questions and we can help.

Thank you for your reply. It would be easier if I was faced with a no brainer decision but maybe Monday will make it one! 

Time will tell. From talking with others with AML when it becomes aggressive then SCT can be taken off the table as an option as the treatment route to get you into that position to go forward with SCT could be removed.

You will find that you are most likely going to be told ‘a lot’ at the appointment, we never used the questions we had as they covered far more then we would have imagined, it was more about trying to understand what they were saying so we were always stopping then and asking for stuff to be be put more simply.

Yes that is the risk. I am in hospital now almost out after second round of chemo so it would make sense to do it now. Already lost the hair got the ulcers!

HI Naiad

My wife was diagnosed with AML in Oct 18 

It was quite aggressive and initially she had chemo and spent 5 weeks in Hospital. This put her into remission at the first stage which is quite normal. However in most cases patients are given further courses of chemo to try and eradicate the risks of relapse. My wife had 2 further treatments each over 5/7 weeks at a time as an inpatient. We were told if relapse occurred then SCT would be the only option.

Relapse occurred in December 2020 and so  the sct option was agreed.

She had this via her sisters stem cells in August this year. She is doing very well and as I write she is now 99 days post sct.

It is very normal to have chemo treatment in the first instance to get you into remission. SCT will only normally be given as a last option. It is possible to avoid SCT if the chemo sessions are successful. Only on relapse would you normally be offered SCT. 

I understand your concerns and anxiety, this is completely normal and totally understood. I wish you well and hope your team get you I to a good place. This process does seem extremely worrying and at times very distressing but you can do this, there ar many hurdles on the way which you will ned to face. Keep strong and believe in yourself that thing will be better. It takes a lot of strength and understanding to deal with this process but never forget this is achievable.

FULHAMBOY (NICK)

Thank you so much for your kind reply. The problem I have is that I am being offered this before I have a relapse. After first round I had no signs of leukemia and I won't know until my next biopsy how it is after this round. My initial treatment plan was 4 rounds. A month in hospital each time. So I am half way through. But not being offered SCT as thete are markers suggesting I had CMML. Its hard to agree to SCT when I am basically in remission but which in fact is a good time to get it.

Sorry I am being offered SCT because of markers but not in relapse 

I am happy to hear your wife is doing well. Is she living with any side effects?

HI Naiad

She has been extremely fortunate that she has has very little effect following treatment. A very small ulcer on her tongue and that was about it. Common symptoms however did appear in respect of fatigue, loss of weight, appetite loss and difficulty in sleeping. These are very very common but as others gave said, there is,always the risk of further complictions in addition to Gvhd which luckily my wife has avoided.

She has now moved to 2 weekly Hospital appointments after almost 3 months post SCT. Her team are very pleased with her progression and now starting to slowly reduce her immunosuppresent medication. Today they are re.oving her PICC. 

Regarding being offered SCT whilst in remission. This is where you need to be before SCT can be given.

Due to covid, my wife was put onto chemo tablets and abdominal injections between relapse and SCT, this was to keep her in remission before transplant.

I don't know about CMML but my guess is that as your in remission now your team believe this is the time to proceed.

Speak with them and ask all the things your concerned about. They will do everything they can to give you the best possible outcome.

Nick

Hi Naiad

I had ALL and went into remission within one month. When in remission I was given a choice of longer term maintenance chemo or a SCT. I was told that there was a high probability with maintenance chemo that the ALL would return and getting into remission a second time may not be as easy. The other option was a SCT with the associated risks but if I could get through it then the long term prospects were much better. I chose the SCT as I didn't want to be continually looking over my shoulder worrying if the ALL would return. That was over 9 years ago and still going strong now.