MDS relapse..second transplant?
My Mum has recently relapsed after over 500 post SCT for high risk MDS. She is very well and fit otherwise.
The consultants are saying that Azacitidine would not work as one category of her blasts in her bone marrow are too high. They are now looking at other treatment options - more intensive chemo, second transplant, clinical trials at Kings.
Shell shocked at the moment, so any positive stories about second transplants or other drugs which can knock Mum back into remission from her MDS would be much appreciated.
Hi there, I'm really sorry to hear that your mum has relapsed and is now facing further treatment. I can imagine how big a blow it is so long after transplant and particularly when she is feeling so well.
I don't have direct experience of relapse or second transplants myself, but as an online community champion here on the forum I have seen many discussions about Azacitidine and other treatments leading to DLI and second transplants.
There are several members of the forum who are either going through or have gone through relapse and some form of treatment to get them back into remission so hopefully they will be able to give you a personal insight into the process and their feelings around it.
It sounds positive that she is fit and healthy at the moment and hopefully her medical team will come to a quick decision about the right course of treatment that is successful in getting her back into remission.
Please keep us updated and let us know what sort of treatment they decide on and how it goes.
All the best,
Thank you Steve. That is really nice of you. Her team are acting quickly - Mum is to start FLAG-Ida chemo next week (her MDS is now AML) and then fingers crossed to a second SCT. She is a strong woman and if anyone can do it, she can!
I shall keep you updated.
Hi Tallgal, I had a similar experience to your mum. I was diagnosed with MDS in 2014 which was thought to be caused by chemotherapy I had for AML in 2011. I had a sibling RIC transplant in May 2015. Everything seemed to be going well until I got the devastating news in December 2016 that I had relapsed. DLI was tried as salvage therapy but this didn't work. In the meantime my blood counts crashed and I had persistent infections which necessitated several long hospital stays. By May 2017 the MDS had progressed to AML. The only option was FLAG Ida and if that worked a second transplant. The odds weren't great; a 15% chance of cure. Sobering times. The FLAG protocol was gruelling. I lost 20kg in a matter of weeks and was incredibly weak as a result. Hosever it did work and AN found me an unrelated donor. I had the 2nd transplant in August 2017 and am now approaching my 2nd 'birthday'. I feel really good but it has been a long and challenging road to get here. I wish you and your mum all the best in the battle ahead. If you have any specific questions i would be more than happy to try and answer them.
Appreciate it has been a while since I posted. I wanted to update you regarding my Mum (Hayley - we also had a long conversation on the phone in September last year - you may remember?!).
I am so pleased to say she is doing very well. She got through the Flag-Ida (although it took a long time!) but it stopped her MDS/AML in its tracks.
She is starting her DLI top-ups next week. Her bloods are all good and chimerism is 99% donor still ?
The consultants have said that there is a still a chance of a long term remission from this treatment, although quite low at 20-30%. They have said about using drugs to control her disease if she does relapse again (which we of course hope never happens!).
Still tough to get my head and heart around at times, but we are all realistically optimistic ?
Thanks for your update, and it's good to hear that your mums treatment seems to have worked. 99% chimerism sounds really good and I hope it stays that way. Hopefully the DLI top ups will help get it that extra 1% though I understand that not everyone gets to 100%.
It certainly sounds positive news and whilst there is still a chance of full remission, albeit a relatively low percentage, it must feel like a relief that the treatment has had an effect.
Fingers crossed that the DLI's are effective and that your mum can stay in full remission with no relapse.
All the best,
Since last posting, my Mum has thrived and she has lived treatment free with excellent bloods results for over 3 years now.
Unfortunately though her bloods started to drop about 6 weeks ago after a shingles (non-live) vaccine. Counts have held again since the initial drop, but they aren’t increasing.
BM biopsy has been done and Mum gets her results tomorrow. Needless to say, it is a worrying time - has anyone experienced blood count drops as a result of a shingles vaccine?
Thank you x