Newly diagnosed with AML

Hi Salisbury96

So sorry you have been diagnosed with aml, it is a devastating thing to hear as it always seems to come out of the blue.

I was diagnosed in April 2018 aged 60, I had been feeling unwell for a few weeks but it was still a complete shock. 
Chemo didn’t start for 3 weeks in my case as I had too many infections. I was dreading the chemo but actually it didn’t seem to affect me too badly. 
I had three cycles over the summer, 10 day, 8 days and then 5 days. After chemo you are very vulnerable to infections as your immune system has been destroyed but your bloods recover after a few weeks and you will start to feel better. 
Hopefully the chemo will get you into remission and they will decide if you need a stem cell transplant , this can depend on what mutations your aml has. In my case they decided no transplant but I did relapse after 5 months of feeling great and then went on to have a transplant. It can be quite a rollercoaster treating aml but I have come out the other side  feeling virtually back to normal.

I hope everything goes smoothly for you ,feel free to message me if you need a chat. There are also some other groups on FB which I found helpful.x

Thanks Mark - this is really helpful. I read your bio and I’m pleased to see you persevered through your journey even though it was difficult at times. I’m hoping I have the same strength and positivity to do the same.

I’ll send you a friend request and see if I can private message you after I’ve done that.

Sorry that you contracted AML at such a young age. I was diagnosed last year at 73 years old and still feel that I will be cheated of many more healthy years.

What we do have in common is that feeling of devastation, panic, confusion, anger, dread and  the same for our loved ones.

Hopefully you will be able to have treatment to return you to health.

Best Wishes.

Hi Salisbury96

At the beginning there are so many questions & in time so much of what initially seems a minefield will become clearer.

I was diagnosed with AML in 2020 age 47, only symptoms were getting out of breath & 1 fainting episode. I was admitted to Barts hospital straight away & had 4 rounds of intense chemo over a 6 month period, I was then in remission. I wasn't particularly unwell with the chemo, not everyone is, hopefully you being younger might help you tolerate it well.

I left it 6 months to recover before getting a part time job & felt really well, infact just like my old self. A few months later my bone marrow test showed the dodgy cells were returning so I started a less invasive chemo treatment & a stem cell donor match was found as a transplant was my best option.

I had my stem cell transplant in April & am grateful to be doing really well, my energy's coming back & I can exercise & do pretty much anything I could before my diagnosis.

You mention your worries about your loved ones, that was one thing I found really hard, trying to manage other people's concerns & emotions. I'd recommend getting yourself some support through Macmillan or a similar organisation as with the best will in the world it can be draining, you need to look after you & keeping your head as positive as possible at this time. I found my positive attitude & trying to see some light on this unexpected journey helped me enormously.

I hope your appointment on Monday goes smoothly.

Hi Lisalisa73,

Thanks so much for your post - it’s really reassuring. So glad you’re coming through the other side. My chemotherapy is now not starting until Wednesday so I’ve been able to go home for a couple of nights before treatment starts, which I’ve really appreciated.

I was told today that I have the CD33 mutation which means I’ll be going gemtuzumab ozogamicin as well as the main chemotherapy drugs. I don’t think this will add to the intensity of the treatment though. She also said that, at the moment, it doesn’t look like I’ll need a transplant and may be able to put the cancer into remission just with the chemo. Obviously this could change but it’s a positive start!

Yes, I think I’ll reach out. Especially when the chemo starts, I’m not sure if I’ll have the energy or willpower to manage those kinds of conversations with loved ones. I’ve been so blessed to have such a strong support network but I think as the chemo sets in emotions will run high.

I've got a terrible memory but I also had gemtuzumab ozogamicin & don't remember it affecting me in any particular way, I think once they got going with the various treatments once merged in with next in my head, I do recall that the doctors & nurses did an excellent job of managing any side effects I had which fortunately weren't too bad.

When I first got my diagnosis which was of course a great shock, I made the decision to try & accept my situation & roll with the journey, looking at it as a moment in time where everything else had to be put to one side & to take this time out to get fixed. I had strong faith in the medical experts getting me well & while I was in hospital it all felt like stuff they deal with all the time which gave me alot of confidence.

It really helped me to keep a daily diary on my phone, I'm pleased I did because occasionally I look back and remind myself how far I've come. I also did a daily Facebook blog, this meant I could keep in contact with friends & family in the outside world, particularly as I couldn't have any visitors (Due to covid lockdown), it also saved me alot of energy with replying to & sending lots of individual messages to those with well meaning enquiries of my progress, I also got some humour in that way too which helped.

During my hospital stays it helped me to learn some new hobbies online, I took arts & crafts stuff, books & a tablet to watch Netflix etc, the days often went quite quickly with an afternoon nap included. I know it sounds strange but once I'd decided to accept my situation & resign myself to the fact my body needed some maintenance, I didn't mind being in hospital so much, I tried to treat it as an all inclusive mini break! Being a patient patient also helped me manage my expectations of my recovery time & to just take it one day at a time.

I'll stop rambling now but if there's any questions I can help with no matter how small please feel free to ask & I'll do my best to help.

All the best for tomorrow.

Hello, so sorry to hear about your new diagnosis. My other half, 42years young, fit and otherwise well - shares your journey. Diagnosis side swiped us out of nowhere. Really does make you reflect and think how long he had been unwell for and how long had he been dealing with it and just getting on each day. He is so keen to get back to normal and back to work. Has just finished round two of chemo and is doing so so well. Its has certainly been the hardest thing he has ever been through. Try and go easy on yourself and your expectations of getting 'back to normal' 

Hi, 

My brother has just been diagnosed with AML, he is aged 44.  I am trying to look for insight from people who are in recovery, reading this has given me some confidence he will get through this.  He hasn't started any Chemo at this time as his immune system is weak and has pneumonia. Anyway, I am still optimistic for him in general but taking it day to day and doing this from another country.  I am flying back to the UK next week to spend time with him and provide some support during this s****** situation.

If you have any recommendations on different groups to join please let me know.  THANK YOU 

Hi , i am so sorry to hear about your brother, its incredibly hard to get your mind round it all and the shock of it. My partner is due to start his 3rd round of chemo next week and he is doing really well. It has been an incredibly tough challenging 4 months since diagnosis, we have just kept going, kept picking out the positives and just taking it a day at a time. Here to help any way I / we can, answer any questions 

Yeah, it's crazy I appreciated the reply.  We are hoping he starts chemo next week and take it from there for now.  I am glad there is a supportive community out there to reach out to.  Do you have any suggestions on books to read for inspiration? I want to infuse positivity where possible in this tough period.   Wish your partner all the best with your recovery.