I keep reading lots of posts on here as I find it helps. So I thought I would make a post, i’m not sure why really. My husband was diagnosed with multiple myeloma in 2022 and he had a stem cell transplant that used his own stem cells. Two years on in this April we found out he now has Acute myeloid leukaemia (AML) probably from the chemotherapy treatment for the myeloma, which apparently they can’t see the myeloma in the biopsies now.
He is having treatment his second cycle of treatment as an outpatient, but has not yet gone into remission.
They then want him to have another stem cell transplant, but from a donor.
It’s so scary, we just don’t know what to do for the best.
I just wondered if anyone else had Acute myeloid leukaemia (AML) from chemotherapy in the past, and if there are any success stories, as everything I read talks about poor outcomes.
Thanks to whoever reads this.
I would like to add that he is 57 and I am 49. He is still going to work everyday inbetween hospital appointments and transfusions. He doesn’t want to stop work as he enjoys it, he runs his own construction business, so it will be really difficult to get any financial help. And I know he worries about the finances.
Hi @LorM thank you for having the courage to post, welcome.
I hope others will be able to share their experiences for you.
You and your husband have had a lot going on in the last couple of years, you must be absolutely exhausted emotionally, physically and practically.
I definitely think this whole thing is scary and it must be so scary not knowing what to do for the best.
Perhaps both of you might write down your fears, questions and practicalities for your husbands next appointment.
Personally I think financial worries are also very scary, especially when you are self employed.
I don’t know if you have a Macmillan cancer centre or something similar in your hospital as you they might have financial ideas, also Citizens Advice or similar might help. Has your husband any applicable insurance covers.
Keeping working is a good diversion in my book.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Really look after and be kind to yourselves and please do keep posting
Just wanted to say hi ~ so sorry that you both have to go through this again but it is great that he is already part way through his treatment. I have seen of people who get Acute myeloid leukaemia (AML) as a secondary form of cancer on some of the different Acute myeloid leukaemia (AML) Facebook groups. I don’t post there but sometimes find them useful for targeted browsing.
Sending lots of hugs and well wishes to you. Keep posting & I have no doubt that plenty of people will be along to support. My husband has had Acute myeloid leukaemia (AML) and is recovering from his transplant so I post often on my own post as a form of outlet for myself.
An update on my husband. His first treatment didnt put him in remission. He is now being treated as an in patient with FLAG ida. Hopefully that will put him in remission and then he needs to have Bone marrow transplant. Its been such a stressful time, not knowing if the treatments will work and what terrible side affects he will have. We managed to have a few good times this Summer with our Daughter who is 20 and Son who is 18. Since last weekend my daughter went back to uni, and we moved my son into his student halls on Saturday. Tuesday John got admitted for his first lot of FLAG. Its so strange now for me, everyones left the house. I have been feeling positive, but am having a bit of a wobble right now, worrying about how the treatment will affect him, and just feeling sad he is going through all this. I cant wait to see him again tomorrow, i hope his nights been ok. He seemed very tired earlier and needed a transfusion along with all the other bags of chemo. Ive read a bit about the FLAG ida people say its brutal, but it seems to generally do the trick and put the Acute myeloid leukaemia (AML) in remission, so im just clinging to that hope at the moment, so any info about what to expect in the next few weeks would be greatly appreciated. And thanks to everyone on this forum, im not very good at posting, but its really been helping me to not feel too alone.
Hi @LorM you and your whole family have had a lot going on since you posted last.
You mirror my experience that I cope and cope whilst it is all going on in the house and then as soon as I have space to myself I have a bit of a wobble, or in my case a complete wobble, as my emotions and mind has the room to do so.
I reckon it is healthier to let it all out than try and stuff it all down as I have done so in the past.
Personally I do not think anyone can answer your question apart from saying their personal experiences. I think most of us have learnt from experience not to rely on googling as there is some information that is out of date and unreliable out there.
Also I have learnt that no two people are the same, we are all such individual, unique beings with medical histories.
Having some space to yourself gives you the opportunity to concentrate on being good to yourself and building your batteries back up, spoil yourself, even if it is something like a soak in a bubbly bath. Please do keep posting how you both are and your fledglings are doing at Uni.