Hello, I am so sorry for your sister. My husband who is 45 also got diagnosed with AML last week. It came out of the blue, he was so into sports and fitness, we are all in shock. I was told by the registrar that at that age, they aim to cure the cancer. AML is usually an old person’s disease and because my husband is fit and strong, I am positive that he will make it. It's been awful though, telling the children Daddy won’t be home for months, etc. He is currently in hospital in London which apparently is one of the best hospital for blood cancer. It’s quite far from where we live in Surrey so visiting is not easy but I try to go every 2-3 days. 

I wish your sister all the best, I am also new in this, but if you have any questions please let me know.

Isabelle x

Thank you Isabelle! It’s amazing how hearing just that little bit of more positive conversation counteracts some of the very depressing news we’ve all had to hear in the last week, so I really appreciate you taking the time to reply. I’m also very sorry to hear about your husband. It’s hearbreaking because of the kids but I’ve also been amazed at how resilient my sisters kids have been. Upset and worried but mostly already adjusting to the situation and taking it in their stride. Tough times ahead but thinking of you all and hope your husband ultimately makes a full complete remission.

I’m going to sit tight, try to stay calm and see how she responds to treatment - if not I’ll be shoving her up to london faster than a bag of blood up a PICC line! Deep breaths to you too xxx

Hello again, you are very welcome, it’s just really nice to share my thoughts with someone who is going through a similar ordeal. Once thing that I would recommend is to educate yourself about the disease. I have been given loads of booklets about AML by the hospital. I couldn’t face reading them last week as I was still in shock but a few days ago I started going through them and it kind of helped to get a better understanding of the illness. You can read about all the side effects of the chemo, the different types of chemo, the various stages of the treatment and things like that. The bookets written by the charity Bloodwise are very informative. In my case it has been very difficult to get some information from the consultants, they are always very vague about the situation and the prognosis or it’s simply difficult to get hold of them so educating myself about it has been my only option so far...

I hope your sister and her family are coping. I hope you are ok too, it’s so tough isn’t it, the “not knowing what is going to happen” bit. 

Take good care,

Isabelle x

Thanks again Isabelle - that’s good advice, I’ll look up Bloodwise - I’ve been trying to do the same a little but it’s such a rollercoaster of hope and fear then hope etc. As my mum is also going through chemo at the moment for breast cancer some of the terminology is now getting familiar, it’s normalising what last week would have been unimaginable. Sister doing ok all things considered, hope your husband is too.

This evening we were told she has the rare flt3 mutation of AML so I looked that up - nothing I’ve read sounds good which is very upsetting but knowledge is power so by knowing at least the doctors can plan - so on this Friday they’ll start her on another newly approved treatment as well as the chemo.

And tomorrow they’ve asked me to come in to test to see if I’m a tissue match for a stem cell transplant. Only a 1 in 4 chance but I’m hoping so desperately that I am and can help. Fingers and toes crossed.

sending my best to you and your clan xx

Sorry about your sister Scream . My sister in law was diagnosed last June with AML . She went on a trial and is of now cancer free apart from a little trouble with her bone marrow everything is looking positive . Ask about trails it’s got to be worth an ask . Keep positive as with any cancer there are many positive outcomes . Keep off google it’s so outdated and will cause you more worry . Ginny x 

Thank you Ginny - your reply has perked me up after a long day. Going to ban myself from googly stuff after 9pm!

Glad your sister in law came through and appreciate you taking the time to share that.

X

it’s a bloomin nightmare . My sister in law and my husband both had cancer at the same time . Make sure you ask about the AML trials for your sister . X 

hello there, I’ve just come across your post and want to reassure you! 

I’m 27, and 1 of 4 being the the youngest, My mum was diagnosed with AML - also flt3 mutation. She’s 60 years young, a paramedic fit and healthy! AML excluded!   She’s completed her 2nd induction cycle and the one thing that keeps me feeling strong about it all is there is a pathway... she’s on a drug called midostaurin for the flt3 and her first bone marrow biopsy showed the AML is clearing! Her 2nd biopsy is tomorrow morning. 

Don’t google anything!  My mum is flying through it and she’s positive just like me and my brothers and sisters, it’s worrying and frightening of course it is but tell your self   The drs have given you a pathway and there’s a finish line! 

xxxxx

Thank you so much for sharing this about your mum - I know everyone’s illnesses are different but it’s always really good to hear of a treatment that’s going well - it’s great that you’re in a positive shape and yes that’s reassuring- thank you :)

My sister is also staying strong (two young children so no choice!) had her first round of chemo and brilliantly they let her home for a few days to be with her family - which has been a big boost - she goes back in tomorrow to start a second round of chemo that’s stronger. She’s on a flt3 drug - maybe two?- not sure the name but it was a trial and has only recently been approved by NICE. I’ll see if it’s the one you mention. I’m waiting to find out if I’m a tissue match for her as they say with flt3 it’s more common to do a stem cell transplant. 

My mum has started her chemo again too. Feeling grateful to the NHS!

thanks again and sending you the best too Xxx