Oh wow - that’s amazing. Thank you!
2 Likes
Hi hope everything is going well with your sister. I would also like to say it took 7 years for a suitable donor to be found for me, just keep pushing through and hopefully one will be found for your sister. Love to you all x
3 Likes
Hello, I’m Anna, diag with Acute myeloid leukaemia (AML) in 2015 and have been a BCUK Ambassador since late 2015. I also work as a patient representative for Clinical Trials and research as well as being a patient advocate in other areas.
Hope you are feeling ok with everything, its certainly a shock and steep learning curve when you are diagnosed affecting things you never expected it to.
There’s actually only a 20% chance of a sibling being a match and some women aren’t able to if they’ve had pregnancies in the past as well as other health related issues. Transplants are such a complicated thing and as you’re finding out they want to make sure it has a high chance of keeping you in remission long term.
I definitely found taking one day at a time helpful because when I contemplated the big picture it was just too much to cope with.
I fully understand what you mean by the what ifs and its ok to feel scared and overwhelmed, it’s a lot with so many sides to it.
Feel free to ask me anything,
BW
Anna
4 Likes
Hi Linda, I’ve just joined his forum and am on a similar path to you. I was diagnosed with Acute myeloid leukaemia (AML) in April, and due to heart problems which I was previously unaware of have been on Azacitidine and venetoclax. The regime is easier to tolerate but it does knock your neutrophils, I’ve been at 0.01 for 3 weeks now, and we’re waiting for them to increase before starting round 3. The plan is for a stem cell transplant but it will need to be an unrelated donor, so I’m not sure how long that takes. Keep checking in and let us know how you’re getting on
3 Likes
Hi @Kate1 and a
big welcome to the forum.
It’s so great that you are able to share your experiences with other forum members - it’s such a key part of the forum.
It must be tough waiting for things to improve before you start the next round of treatment. I really hope things start moving in the right direction so things can get moving again.
Now you have found us I hope we can support you as well as you supporting and sharing with others.
Please do keep us updated on how are doing and take good care of yourself X
2 Likes
Hello @Kate1
Good to hear from another Acute myeloid leukaemia (AML) patient. How are you getting on? Are you getting the support you need from your medical team? Have they started looking on the registers for a donor?
BW
3 Likes
Hi Ledgell, I am in virtually the same position as you! Sudden diagnosis of Acute myeloid leukaemia (AML) (at Barts) in April after routine blood tests, and now undergoing treatment with Azathioprine and Venetoclax. I’ve just finished cycle 3 and, like you, my neutrophils are at 0. I’d been neutropenic for several years before my diagnosis, possibly due to Polymyalgia Rheumatica, but this didn’t cause me any problems and I didn’t suffer from infections. But I think this low ‘base level’ hasn’t helped with my low counts now. Like you, I’m now considering a Stem cell transplant and, fortunately, my sister is a complete match and has not yet been ruled out.I know this is my best chance but I find the prospect terrifying as I have just turned 73 and so my age is against me! I wonder if our paths have crossed in Ward 7a at Barts? I wish you well with your treatment.
1 Like
Hi, Ledgell and Kate, Just to correct my previous post - I should have said I was on Azacitidine and Venetoclax, not Azathioprine!
2 Likes
So sorry I didn’t reply earlier. Hope those stubborn neutrophils have started to bounce up finally?
2 Likes
Hi there. I suspect that I had been neutropenic for quite some time too, before I was diagnosed with the Acute myeloid leukaemia (AML). There do seem to be lots of similarities in our stories, doesn’t there? My consultant has made it perfectly clear to me that Stem cell transplant is not just my best chance, but my ONLY chance of beating this…(my particular disease mutation is quite rare and high risk). I am training myself to be grateful, as not everyone is offered the option of Stem cell transplant.
And yes, I’m guessing we will almost certainly have crossed paths in 7a - It appears to almost be a second home right now!
Please do let me know how you’re doing x
2 Likes
Hi Linda,
I’ve just been reading your post. My dad was diagnosed with ALL in December. Speaking as a family member, please don’t feel like a burden. Family is the most important thing and all your children and husband will think about is you, work and other things are secondary.
None of us feel like that about our dad who’s going through it.
Really hope you’re doing ok, and being kind to yourself.
Sending my best x
2 Likes
Hi @Jane123 a great big welcome to our forum and it can be a very small world as you and @Ledgell are finding out.
When I was first diagnosed with another blood cancer I thought I was the only person in the world, it is a very lonely place. That is is a great value of our forum I never feel alone.
I am also 73yrs old and a mere spring chicken as I expect you are too.
However I think it is natural to feel that anything unknown is very scary.
Please keep posting, I look forward to hearing more about you.
Look after yourself
1 Like
Hello all. Another family member of someone with Acute myeloid leukaemia (AML) here. My 81 year old dad was diagnosed at the beginning of the year. You are not a burden. At all. And actually sharing your worries and ups and downs with your family helps them too. So please do talk to them.
My dad is also on the Azacitidine and Venetoclax regime, but isn’t eligible for anything else because of his age. His blood counts are absolutely through the floor and don’t seem to be recovering despite the consultant casually telling us there is no sign on the Leukemia any more (I’m going to make him repeat this to make sure I didn’t make it up!). It is reassuring to hear others are struggling with their blood counts too.
3 Likes
Hi @Ilona you are never alone on our forum, yes, please do get all your questions answered and clarify what the consultant said.
I believe all family members and carers are absolute stars and the unsung heroes.
Look after and be very kind to yourselves
2 Likes