How hard is the AML treatment?

Not gonna sugarcoat it, its a very difficult, long process. I'm not sure i could make myself walk back into the hospital to do it again. But many of us have done it and lived to tell the tale. Tell your medical team about all your concerns and listen when they are encouraging. You can do it!!

Giving your post a bump to see if you can get more reply’s x

Thanks. Not had a lot of response on any of the Macmillan forums to be honest. 

Hi Nicola, sometimes it does take time to get folks coming on and posting - let’s look for more reply’s.

From what I have seen over the years the treatment used can for some be very hard work and can include going onto Stem Cell Transplant (SCT) and having been through two SCTs myself that part is hard enough in its self but we all have to do what we need to do xx

Hi Nicola,

I just thought I would chip in with some personal experience you will probably read many different things and hear many different stories but no two will be the same and I would say AML is difficult for anyone and an unpredictable disease for sure!

My husband is 44 and has had AML for nearly 2.5 years. He has been to hell and back. It has been worth it for us this far but every case is different. He had 4 rounds of chemo first but relapsed after 11 months, then 2 more rounds of a different chemo which put him in intensive care with pneumonia but it worked so he then went on to have a stem cell transplant (which was not as bad as it sounds) and recovered well but relapsed again. He then had 2 more rounds of chemo and in between we managed to get married. The plan was to give him some more cells from his stem cell donor but he relapsed again before this could happen so he is now on a trial for a drug that targets a specific marker which is part of his cytogenetics (everyone has different mutations in their leukaemia cells so this can make quite a difference to your options sometimes). He has spent half of his life in hospital since diagnosis and we have adapted to that. He has had some rounds of chemo that went very smoothly and some that didn’t. We don’t know what the future holds now but you can only take one step at a time and see where it takes you. I’m very sorry for your diagnosis and it’s not possible to know how hard it will be till you try.

I have also come across a patient in his 60s who was diagnosed just before my husband and went straight from his first round of chemo to transplant and has been in remission for nearly 2 years and doing well. I also know of a patient in his 50s who has been in remission for 5 years now with just one round of chemo and another in his 40s who went straight from 1st chemo to the trial medication instead of transplant and he has been doing really well for the past 8 months. Basically you could do really well, it’s not where you want to be right now and I completely understand that you have already been through the mill. In our experience the support for AML has been pretty good from the hospital in terms of counselling, complimentary therapy, dieticians, places like Maggies and our specialist nurses. 

I hope you can get the support you need to help you make your choices and get through this. There are quite a few examples of people doing relatively great on here and we all wish you the same! 

Thanks for your post it’s greatly appreciated. As always when we get these diagnoses it’s good to hear everyone else’s experience so thank you for sharing. I know everyone is different and will respond to treatment differently as well. 

I hope to know more about my diagnoses tomorrow but I don’t think it will be good news to be honest as my blast cells are high at 50% and with my kidney function so low they are very limited on options to treat it. 

Hi Nicola

I am sorry you had to find your way to this forum, but you will receive very good support here. People come and go and take a break when they need to, though, so responses don't necessarily come in every day. 

You can read my background in greater detail from my Profile - but essentially I was diagnosed with 95% blasts and am not only here to tell the tale, two years later, but am in very good health with no residual disease at all. 

The treatment for me was two rounds of chemo on the AML 19 trial and then an allo stem cell transplant.  It's a long and sometimes tough treatment, but the expression used repeatedly here and on the SCT forum is that it is 'doable' and it is, day at a time. 

Sending love and my very best wishes.

xxx

Thanks for responding. I’m glad to hear you’re doing well. I still don’t know what type of AML I have but I do know that it has come from my donor cells from my first transplant. It’s very unusual for this to happen. Only 60 cases since 1971 when they first identified it. 

I have to wait till Wednesday now for more updates. Get fed up of the waiting with all of this. Meanwhile my counts are low and I’m transfusion dependent. I thought these days were gone but I’m right back where I started four years ago. 

Has anyone had shooting pain in their spine as part of the initial problems before treatment?

A lot will depend on your treatment I myself was treated with regular chemo and on top of that mylatag. Like others have said you can sugar coat it . It is tough and side effects and complications vary from person to person. Myself I ended up in icu to start with due to low potassium levels, I got stomach infections main one bring gastrointestinal and then I had liver function issues and fungal phuenumia. Just remember though everyone reacts differently and infections vary . It’s tough but the rewards are worth it , just remember to keep moving during and after treatment beware your tastebuds go out of the window so you’ll have to experiment with your foods if you can’t eat try to drink milk as it will fill you up, when I was having and after treatment oat cakes were a god send. Even now whilst I’m home leave at moment some foods and drinks turn my stomach and fatigue one day I slept for 16 hours, sleep though is your friend as it your body can repair itself. Any questions let me know 

Thanks for the Info. Did you have the intensive treatment with Danorubicin and Cytarabine?

Do you know what type of AML you have ?

where are you being treated? 

Im in Manchester at the Christie.