Chronic myeloid leukaemia

[WTFisThisNow]

Sorry to post this in aibu.
I'm trying to get as much info as possible and I know this is the busiest board.
My FIL has been diagnosed with Chronic Myeloid Leukaemia.
He's very stubborn and won't talk about it at all.
All we know is he was diagnosed last November, he's stopped working and is taking pills daily and goes for regular blood tests.
It's making me more worried looking online about it (5 years to live?!) so any facts or advice would be great... tia!

Hi Op, CML is very treatable for most patients if it is diagnosed in the chronic, slow growing phase. It’s managed with a daily targeted tablet treatment. Some patients will be able to stop this treatment after some years and maintain remission. Some need to take it lifelong. For most patients there is no impact on life expectancy.

@IheartNiles Thank-you so much! That's actually really reassuring to read.

I would hope he'd tell us if his life expectancy had been cut but I actually don't know if he would, he's so old fashioned about this, even though they're grown ups, he thinks it's not the 'kids' place to deal with stuff like this! 🤷🏼‍♀️

You might find he opens up a bit as time goes on. Once it sinks in a bit. It’s good that he told you, quite a few people don’t disclose it.

Tbh it was MIL that told us, she was in a state and she and DH are very close.
She won't tell us anything else now though, I highly suspect that FIL has asked her to keep it to herself.
It's hard for her too cos she hasn't really got anyone she can open up to about it now.

There will be help out there for MIL if she's willing to access it OP - and for you and your DH too. You can ring the Macmillan helpline to talk to them, if you have a Maggie's centre near you they're a wonderful source of support or your local hospital may have a similar charity providing care. My husband was diagnosed with APL 2 months ago, he's only been to Maggie's once but I'm a regular visitor, I absolutely couldn't cope without the love and counselling they've surrounded me with. We've had amazing support from Macmillan too. It's so important to be able to talk.

Hi. When I was diagnosed the doctor told me not to focus on the name as it acts and is treated very differently to the other types of leukaemia
I've had it over 5 years now, and the main problems have been the side effects of the tablets, which can be quite severe depending on which ones he is on. They also lower the immune system so much more chance of catching bugs, and infections. If you can make sure he gets the flu jab
Happy to answer any specific questions you have relating to living witn CML

I would be cautious about googling - the outlook for CML has changed significantly over the last 10 or so years (for the better), but online information can take time to catch up. Also 5 year survival is a standard benchmark - it doesn’t mean people will only survive 5 years. So eg 80% survival at 5 years - those patients may well still be alive at 10 years it is not that they have 5 years to live.

Thank-you so much for the replies!
Yes MIL did say we should be wary of coming to visit when we have nasty bugs.

I feel like I want to talk to them about it but DH is the same as FIL and clams up about emotions and he thinks I shouldn't, if he wanted to talk then he'd talk so I have to respect that. 😬

Yup dont visit when you have a bug my kids dont visit stepdad after the nasal flu vaccine as it "sheds" unless he has had his flu vaccine first and so on

Step grandad I mean 🤦‍♀️

My nanna had this, and lived with it for lots of years (I can't remember how many). She went for regular (3 monthly or more often sometimes) blood tests at the hospital, which then got sent for in depth test for different levels, and once she was on the tablets for a while the consultant was really happy with her levels each time she went.
She died of something unrelated, which I think is quite common as the prognosis id quite good for CML.
Fingers crossed your FIL will be OK for many many years to come xx