Hi there, I’m Linda. As I write this from my room at Bart’s Hospital, I am grateful to find some fellow ‘travellers’. My journey started with a sudden diagnosis of Acute Myeloid Leukaemia after routine GP blood tests in March. And then the rapid admission to hospital and beginning of aggressive chemo within two weeks. It has been very VERY tough. Things got rather complicated for me, with severe infections and reactions to drugs. So five weeks initially in hospital. I was allowed to come home finally despite having close to zero neutrophils. My blood count has never really recovered - has anyone else found this?
Most recent Bone Marrow test showed that I am almost in remission…….but not quite, after the first cycle. Again, has anyone else experienced this - not achieving remission after the induction chemo?
So, here I am, on a completely different treatment plan (as I was deemed unfit for more of the same!) - 7 days of Azacitidine injections & 28 days Venetoclax tablets - As a ‘bridge’ towards stem cell transplant (hopefully two cycles of this then Stem cell transplant). I understand that it’s a short hospital stay this time, with most of the tablets taken at home.
Has anyone else done this with such low blood counts (and constantly severely neutropenic)?
It all feels like such a burden for my husband and family….who are still reeling from the shock, the changes we/they have all had to make already to our lives, and the inevitable fear about the future.
I think what has shocked me the most is the isolation and ‘aloneness’ of hospital, and having had no opportunities for talking therapy or counselling support - this Acute Myeloid Leukaemia thing is utterly huge, everything happens so suddenly, and there has been no way to talk, process, grieve………
I’m sure these feelings must be common, and in the end, we find our own ways to cope ….and fight. This is certainly the greatest of life’s battles I’ve had to face.
I’d love to hear from anyone whose response to treatment, low blood results, slower speed of remission has been classed as ‘untypical’ (by the consultant) !
Hi @Ledgell so glad that you have found us too. Thanks for being so honest in your post, you seem to have great personal insight.
I have not had the same medical journey as you.
However I was really struck by the fact that you and your family have not had a chance to really process your diagnosis, rapid admission and really tough treatment regime.
Have you asked your family if you are a burden to them?
From my experience you are probably all sharing similar thoughts and feelings, just from different angles.
You are so right about the thoughts and feelings of of isolation and aloneness a prolonged stay in hospital can bring and the emotional side of shock and not being able to talk, process, grieve etc. are so often overlooked.
Perhaps if you are in hospital you might ask if there is someone you could talk to or when you are home your GP might have some ideas for you and also your family if they would like it.
The Blood Cancer UK support line is there for you and your family on 0808 2080 888.
Perhaps the main thing you might do is to keep posting as I have found it therapeutic and all of you to really look after and be very kind to yourselves.
Thank you for replying Erica.
My husband tells me I am not a burden but I am so aware that his life has ground to a halt too - he has had to stop all his self-employed work for now. I haven’t actually asked my grown up children! But I’m sure they would all say no …….
I did explore the idea of some counselling by asking my GP who directed me towards a website which is our local health trusts ‘go to’ service. Counselling for cancer patients wasn’t listed amongst areas they cover. So I contacted Macmillan and signed up for a ‘telephone buddy’. I am waiting to hear back from them (not sure how long this process takes).
Hi @Ledgell,
I was just wondering how you are doing? Did you happen to hear back from Macmillan around the telephone buddy?
I hope treatment has been okay for you.
Do remember we are here for you should you need to talk anything through- 0808 2080 888.
Take Care, Lauran
Yes I did….and they referred me on to BUPA, which offer a six-week block of free counselling. I am so grateful. BUPA responded really quickly and I have had my initial assessment with the first session later this week.
Good news @Ledgell, I found counselling was good, but not an instant fix, it was time for me to make sense of everything.
Please let us know how you are doing and be kind to yourself
Hi @Ledgell
So sorry to hear that you have been diagnosed with Acute Myeloid Leukaemia.
I was diagnosed out of the blue in October 22… at work one day then in hospital the next !!
Rollercoaster ride doesn’t begin to describe it.
I am like yourself, I feel so bad for my partner, family & friends. I feel like their likes have all been impacted in such a big way too.
They are all so supportive and never complain.
I have had 4 rounds of chemo and I am now going for a Stem Cell Transplant on 4th July.
Trust in your medical team and always ask plenty of questions if you are unsure of anything.
We learn a totally new language now :-
Neutrophils
Platelets
Haemaglobin
Bone Marrow Tests
I hadn’t even heard of some of these until October.
There are so many lovely people on this Forum who can tell their experiences, we are all on a similar journey and can try to put your mind at rest, but ultimately like I said … ask your medical team as much as you need to know. They are the ones with the knowledge & skills.
Keep us posted on how you are , if I can be of any help to you , please ask 
Take care x
Thanks for checking in 
I’m doing ok - now at home with just four days left of the Venetoclax tablets. So far, no infection or unexpected hospital trips……. I have a bone marrow test on Wednesday which should tell us whether I am finally in remission… please God 
I anticipate stem cell transplant sometime over the next few months, and am so grateful to hear from you as your journey is on a similar path.
I imagine you may already be in hospital preparing for your Stem cell transplant? Hope it’s been uneventful so far. Would love to hear how that’s all going (when you are able) Please do keep in touch xx
We have everything crossed that Wednesday brings positive news! 
Hi @Ledgell , please do let us know how your bone marrow test goes on Wednesday, I will be thinking of you.
Look after yourself.
Like everybody else, I’ll be thinking of you this week
Hi @Ledgell
Lovely to hear from you and I’m glad you are spending some time at home and doing okay 
I am not in Hospital yet for Transplant, I get admitted on 4th July.
Good Luck on Wednesday with your Bone Marrow, they are not something we look forward to, but must be done. Waiting on the results is just horrible too.
I’ll do my best to keep you updated as I go along.
Look after yourself, sending you big hugs 
x x x
Just checking in. My clinic appointment yesterday at Bart’s went well - there was good and not-so-good news (as usual). I am finally in remission - with 0% leukemia cells! The news I had been praying I would hear. They now need to keep me in remission until a donor is found…as the leukemia is aggressive and (they tell me) WILL be back. More treatment with the Azacitidine and Venetoclax.
We had our hopes raised when we heard that my sister is a full match, but they have pretty much decided that she will be ineligible due to considerable health problems. And there is no match for me on the international database. So today, we learnt a new term -‘haplo’ (haploidentical)transplant - where a half-matched family member’s stem cells are used. Not ideal, but apparently my only chance of getting a transplant quickly… This is likely to be one of our three adult children. I have such mixed feelings about this, about the additional risks with only a half-matched donor. I would be so interested to hear from anyone who has successfully undergone a haplo transplant.
To be honest, I am pretty scared about the ‘what ifs’, but realise I need to take one just day at a time.
Hi @Ledgell, hope you’re doing okay. So glad to hear you’re in remission!
Sorry to hear that your sister is ineligible to be your stem cell donor, that must have been disappointing for you both. You may find it useful to read/join this thread here 0 SCT from daughter, anybody with experience of a half match? - Going through treatment - Blood Cancer UK Forum
Hi @Ledgell, Yes, just when you are really pleased to have good news there is a sting in the tail, typical. Sorry to hear that your sister is not appropriate, the good news was that she was a match, then that sting in the tail again, that she cannot because of her considerable health problems, that must have hit you both hard.
I believe that there are many types of transplants and lets hope one of your grown up children will be appropriate.
I am not surprised that you are scared and the ‘what if’s’ have set in, you are human, and the unknown is scary, but your philosophy of one day (hour, minute) is a great idea.
Make sure that you ask every single ‘what if’ and question that you have and please keep us updated, if you would like to talk anything through or just to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Be kind to yourself
Hi @Ledgell
Don’t panic!!
My sister wasn’t a match at all and there were no matches on the register for me. I had a Haplo transplant in April 2022 with cells from my daughter.
All went well, chemo a few days after transplant to remove the unmatched half!
I’m 15 months post transplant now and back to my old self and enjoying life.
Good luck x
This is so encouraging- thank you!
Linda
Hi I didn’t have that kind of transplant but I had a sort of mini one from an unknown person, I was given a 12% chance of it working. 15 years later I’m still here, don’t worry go for it. x