Just diagnosed with AML

My consultant told me not to go to the dentist during my treat ent due to my platelets being too low. They prescribed me a good mouthwash, can’t remember what it was called but it helped with my oral hygiene during the chemotherapy.

Post transplant, I started going again and haven’t had any issues.

1 Like

That’s amazing Diana, thank you so much for sharing this story of positivity and hope with us all. Can I ask how old you are? (If it’s not too nosey, sorry…) Thanks again and wishing you all the best.

1 Like

Sending you love Caroline, it’s all so scary.

1 Like

I had to scroll back to see what I wrote! Of course I don’t mind you asking how old I am, especially as there seems to be an idea circulating suggesting that Acute myeloid leukaemia (AML) is at best something that is treated palliatively in older people. I was 64 when diagnosed, just turned 69 now. I had my transplant in Southampton, and I know that they are offering transplants to people well into their 70s as long as they are suitable. My consultant said to me at discharge from the transplant unit ‘the hard work starts now’ and I think that’s true. It didn’t help being discharged a fortnight before first lockdown, but I had close follow up and lots of encouragement. I can honestly say that, apart from getting a little more tired than before, I feel entirely back to normal. I have eleven small grandchildren who keep me active, my husband still works part time, and I pursue various academic courses as well as keeping up with regular exercise. I even survived Covid 19 last December (received the antivirals promptly) with no worse symptoms than a bad case of sinusitis. I’ll carry on flag waving for optimism and hope after a diagnosis of Acute myeloid leukaemia (AML)!

4 Likes

Hi Jilly, I hope you find a donor soon. When you ask about experience of deconditioning, do you mean getting very unfit? I had a diagnosis of high risk due to dysplasia from the outset, and our local unit always gives two cycles of chemo before transplant regardless of complete remission after the first. I had flat neutropenia with my first round of chemo (it was CPX 351 which is now marketed as vyxeos - it was coming off trial when I had it), and again after second cycle. Consequently I was in hospital for six months, apart from five days at home between the two cycles. As you can imagine, stuck in an isolation room with yoga as my only exercise option I lost quite a bit of weight. I did have an exercise bike in my room that the physios found after a few weeks. When I got home from the transplant I struggled to walk 100 metres, I was so deconditioned (previously I’d been a runner, half marathons etc). All I can say is that you just have to be determined, go for little and often, achievable goals, and you do get your fitness back. What nobody warned me about was the psychological effect of change in body image. I got very bloated with ciclosporin, had swollen ankles - and then later I got skin Graft-versus-host-disease. Before transplant I was size 8/10 (I’m 5ft 9in) but for nearly a year after I had to get size 12 clothes - just fluid shifts. It does all settle, and as I say, I’m totally back to normal, but it takes time. I’m also back to walking a minimum of 5 miles a day, 10 miles 2-3 times a week, and sometimes 15+ miles with my husband at weekends. I really hope it all goes well for you - it’s daunting at the beginning, but I’ve always found the transplant nurses incredibly helpful.

3 Likes