I’m 28 years old with AML

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Hi, I was diagnosed with AML in July and have had 2 rounds of intensive chemo and now I’m having my third round of chemo which is flag ida. After round 1 I was in remission and it all seemed to be going well, however my results for round 2 showed there was still some dodgy cells lying deep in my bone marrow. Which has lead me to now having the flag ida chemo and a transplant in the new year.

This round of chemo has been absolutely horrendous and I am so nervous and worried about the transplant which is coming up in the new year. Any tips or advice of how to cope?

Thehighlander over 1 year ago

Hi AMLat27 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

I don’t have AML but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well……

More so as I have had 2 Allo (donor) Stem Cell Transplants (SCT) (June 2014 then Oct 2015) and I am still here living a great life.

SCT will come across as being scary but the process has been done for many many years and it is now see as a run of the mill treatment.

We do actually have a dedicated Stem cell transplant support group where you can talk with people from various blood cancer including those with AML.

Do join the SCT group and introduce yourself by putting up a post (you could just copy and paste the text from this post)

I will keep an eye open for you and will be able to highlight some good information that will help you navigate the SCT Magical Mystery Tour.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

DisneyDiva over 1 year ago

Hi AMLat27,

It is a shock being diagnosed young with AML especially when the info states it’s usually over 60s who are diagnosed with it.

Sorry that your chemo didn’t work 1st time round and that you are having to have a 3rd session. I had 2 rounds of chemo and a round of conditioning treatment for my stem cell transplant and each time my body reacted differently. I was 37 when I got my diagnosis so 10years older than you so you are probably stronger than me. The Mucositis was the worst for me. If you do get it make sure you use everything they prescribe you and for me iced tea from Whittard was a god send as I wanted cold drinks or nothing!!
The Stem Cell Transplant is nothing to worry about. It is a quick procedure and the transplant nurse will talk you through it. The Hickman line was a strange sensation for me but I think that’s because I’d got so used to my PICC line. The isolating afterwards isn’t much fun so make sure you have banter with the nurses and doctors.
Good luck with your transplant and I hope your body accepts it and you will be back in remission and when you have your 3 month post transition bone marrow biopsy it’s great news.
By the way I filmed my stem cell transplant and my family and friends found it fascinating and I was able to look at the video and be like wow these stem cells are going to change my life so I’d recommend doing it.

Fur baby mummy over 1 year ago in reply to DisneyDiva

HI Disney Diva, apolgoies for jumping on your post but I found your post very helpful and positive at this time. My husband was diagnosed just before new year with AML and although his first chemo didnt work, his 2nd FLAGIDA and Venetoclax has him in remission. He was readmitted yesterday for bridging chemo as we are starting moving forward to Stem Cell transplant. We have been told many many horror stories and have had the consultancy in Bristol. thank you for posting abour your stem cell experience, it is so encouraging. hope you're keep very well x

Fur baby mummy over 1 year ago

my husband had flag ida as a 2nd chemo due to the first not working and it has worked wonders so far - i really hope you are keeping well and it wasnt as bad as you might have thought it was.

DisneyDiva over 1 year ago in reply to Fur baby mummy

It’s great to hear that your husband is having the bridging treatment and a stem cell donor has been found for him. I’ll admit the time after having my transplant and waiting to see if it worked was worrying and I did prepare myself for it not working so I wouldn’t be disappointed if it didn’t. It’s amazing what medical science can do now.

Bartyboy over 1 year ago in reply to Fur baby mummy

I don’t often look into the site these days, but I happened to see your post. I hope that my story will be a positive boost to your Husband and all those undergoing treatment for AML. I was diagnosed with AML completely out of the blue in November 2016. I had been feeling unwell for 7 weeks, and kept being fobbed off by my GP, saying I had a persistent virus. Finally a second GP took a blood test, and I was immediately admitted to the Cancer unit at Poole Hospital later that same day.

After a confirmatory bone marrow biopsy, I was given a five year survival chance of 26% based on my genetic profile. I decided to focus on the 26% so opposed to the 74%! I started chemotherapy the following day. I was offered the chance to be part of the AML19 drug trial through Cardiff University and funded by Cancer Research UK, and I readily accepted. I was randomised to have FLAGIDA chemo with two doses of Mylotarg. In total I had four cycles over the next six months, spending endless weeks in isolation. I ended up having 56 pints of blood products transfused into me via my Hickman line, as well as numerous litre bags of antibiotics having caught sepsis twice while neutropenic. I was finally discharged in late April 2017, somewhat bruised battered but alive.

I’ve spent the last six years, rebuilding my strength, embracing life and cherishing my family. I’m still more forgetful, and the fatigue has never really gone away, but that’s a small price to pay to be alive. In January of this year, I decided I wanted to give something back to cancer research uk, as their research funding literally saved my life. To this end I signed up to complete their Jurassic coast marathon, which was last Saturday 8th July. I completed the course with my son in 10hours 59 Minutes and 24seconds. It’s was incredibly hard, as the full 26 1/4 miles is very hilly, but I'd been training hard, and had already hiked the full course in sections. Out of a field of about 450 hikers, we were nos 276 and 277, so quite respectable.

I‘d liken the Marathon to AML treatment. Yes it’s tough, but you just focus on each step, and you just dig deep and keep going, and never ever give up hope.

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