There was someone who posted on my thread (quite some time ago). I can’t remember who - sorry. They had a transplant from one of their children and were doing well quite some way down the line.
The transplant team will be working in the background to find the best possible match. Sometimes we don’t always see this but it will be happening. Perhaps you can ask to speak to one of the transplant team? Keep asking questions to your consultant too.
Thinking of you lots. Rest up and let us know how things are going when you can.
Hang in there @Caroline30 . Not quite the same but my husband did have a half match from his brother in June. He is doing really well post transplant. I think there was a higher risk of Graft-versus-host-disease to monitor for but his consultant also said there were some benefits to that in reducing any remaining leukaemia cells.
Thinking of you and your family. Be kind to yourselves and hope you can find some pockets of moments to enjoy / rest and relax
Yesterday I was at my lowest since being in isolation this time around. I had a nosebleed from 10am until 4pm had platelets (were 9) and tranexamic acid so it did then stop, blood transfusion too. Good news on transplant, more than one full donor match as been found, scared about having a different line as it is longer but supposedly easier but it sounded horrendous to me yesterday. Iam feeling more positive about it today but still scared to be honest.
Oh @Caroline30 I expect your nosebleed must have felt never ending and then a blood transfusion as well
I sounds positive news on the donor side.
It sounds as if yesterday was a scary day and today more positive, but scary as well. For me the unknown is always scary.
We are here for you and so is the Blood Cancer UK support line on 0808 2080 888, you are not alone with your forum family here.
Be ever so kind to yourself and please do keep posting
Hi @Caroline30
Hopefully this message finds you feeling a little stronger. Great news on the transplant side.
I had a transplant in July with a 10/10 donor and I’m fortunate to be in remission at the 3 month check.
I had a new Hickman line for transplant and it wasn’t as bad as they describe. I had to change hospitals for the transplant and that was hard as it was so large and impersonal but I got there and the staff were lovely on the most part.
Keeping you in my thoughts and remember one day at a time
Big hugs
Keep going @Caroline30 you’re doing marvellously. My husband was apprehensive about the Hickman line and transplant. He’s coming up to 6 months post transplant and is doing good so far.
After 30 days in isolation Iam going home! Consultant I saw today but not met before, is all for patients having treatment has an outpatient in day unit whenever possible to save the time spent in hospital. Appetite is good, bloods and platelets haven’t fully recovered but are stable, neutrophils low, no symptoms of anemia so he is happy for me to attend day unit up to three times a week for blood counts, transfusions etc and obviously keep myself safe. I will take all that to be home, back to my consultant in January to see where Iam at regarding chemo and Stem cell transplant. Fresh air and my bed is all I want for Christmas right now! Just blood transfusion before discharge.
Oh Caroline, I hope this finds you feeling mentally stronger at home. It makes such a difference just being in your own environment even if you can’t go out places.
Best of luck for your follow up in January
Jill
Hi all,
Just wanted to pop in and say merry Christmas to you all. Hopefully this message finds you all at home and feeling ok. Huge thanks to @Erica and team on here for all the support this year it means so much.
Take care
Jill
Last week I was crying from the pain of an horrendous BMB. Took six attempts to get samples, after which I could hardly move for three days. Today the results show no cancer cells so in complete remission for the second time. So another round of the same chemo flag (without the ida) at the beginning of February while preparations for a possible transplant will also be going on.
Hello Erica and others that I know. I have been completely unable to find the forum for months, hence the silence. I’d like to add some positive vibes for @Caroline30 and @Jilly in particular. I have my five year!! follow up with the transplant unit next month, unrelated donor transplant for high risk Acute myeloid leukaemia (AML) with dysplasia, complicated after a year by skin Graft-versus-host-disease, and I can promise that there is (eventually) life after Acute myeloid leukaemia (AML). My follow up appointments have got further and further apart, I survived Covid a year ago (with remarkably little trouble - got easy access to the antivirals), and I got PCP pneumonia 18 months ago, was unwell for a month but avoided hospitalisation. I would like a bit of advice please - I picked up some sort of fluey respiratory virus after Christmas. Of course I’d had my flu vaccine and my Covid booster, and I also paid for the RSV vaccine. Anyway it’s dragged on and on. I was given antibiotics by my GP on Monday, but I’m not convinced they’ve made a difference. I’m not ill, no fevers, just not 100% well. If it was only 1-2 years post transplant I’d expect a simple virus to drag on, but I’d hoped that by 5 years everything would be back to normal. Has anyone got any experience please.
Hi @diana wonderful to hear from you again, I am glad that you re-found us.
Lots has gone on for you.
I hope someone will be able to share their experiences for you.
Be very kind to yourself and perhaps go back to your GP if you still do not feel as if you are getting better after your course of antibiotics.
Please do let us know how you get on and be kind to and look after yourself
Hi everyone, so not the start to 2025 I wanted my neutrophil counts are falling now 0.2 I am 6 months post transplant and just wanted to get some normality back.
BMB planned for Monday so hoping everything still shows remission. My Hb and platelets are behaving at least. I might need a DLR which is a donor white cell top up. Any experience of this on here ?
Good news about the remission @Caroline30 sorry the biopsy was so bad for you. the next chemo goes smoothly
Hi @Jilly please do let us know how your next appointment goes.
I hope someone will be able to share their experiences for you.
Take lots of special care of yourself.
Sorry to hear that Jilly, fingers crossed for Monday. I always felt that waiting for the results of BMB was much worse than having the biopsy. I was unable to have DLR because of Graft-versus-host-disease, but I think it’s just as straightforward (and anti-climactic) as getting the transfusion of stem cells. Good luck.
Hi everyone. Yesterday I had the dreaded transplant talk even though I had been informed of what I could expect, I came out an emotional wreck. So much to get my head around, risks, side effects, clinical trials, not really having a choice if I want to live. Iam back to hospital this week for another round of FLAG chemotherapy so need to get through that, Iam probably looking at April for transplant.
Oh @Caroline30 ‘the talk’ I have heard is not easy to hear and perhaps it is natural to come out an emotional wreck. It is like the great big sheets that come with some medications, they have to honest and cover everything.
Give yourself time to assimilate it all.
Before next week you have time to write down all fears, questions and practicalities for your specialist nurse or medical team.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Be ever so kind to yourself and really look after yourself and please do keep posting how you are.
.
the next chemo goes smoothly