I haven’t been on here for some time but I wanted to check in and see your husband is doing, i am so glad to hear that he is recently MRD negative
When my younger brother was diagnosed with Acute myeloid leukaemia (AML) in January reading through this forum helped me to get through the darkest of times!
For all of the readers here my brother was diagnosed with Acute myeloid leukaemia (AML) in January 2024 and has made a full recovery and is now in remission.
I know it’s scary the stories you read online are all so scary but there is a lot of hope and there is so much treatment available for Leaukemia now - so if anyone wants to talk about his experience please do reach out!
It was a huge deal for me and I came close to feeling like I couldn’t or shouldn’t do it, and whether I should just cancel bbut I’m proud of myself for getting back out there and it has definitely helped me mentally, I feel a bit more lifted and positive than before.
No news on our side ~ we are currently on a 4 week period between appointments and trying to enjoy living life, it is taking adjustment but wanted to note here for my diary that at the moment, he is feeling relatively well. We must be day 144 post bone marrow transplant.
This is wonderful to hear that he is doing so well. Long may it continue! Please come back periodically to update us, it is such a lovely tonic to hear from people who have walked the path and can share their experiences!
Not a whole lot of news over here… husband is doing good. He’s struggled a little bit with the cold weather when he is out and about…: he comes over all itchy once he comes home. I think something to do with layers and sweating I presume and the temperatures. It causes him discomfort for a bit and he never has that before transplant… will mention it next week.
Other than this, he has had a cold. He’s tolerated it very well but I found it a bit anxiety inducing…
Hospital visit on Friday to do bloods. How is everyone else doing? Hoping everyone is doing good but I would love to hear anything you want to share.
Hi @Toadmum thanks for the update and I think that it is natural that you got a bit of anxiety when your husband has had a cold.
My social calendar seems to be taking off at this time of year and just got a hospital appointment coinciding with a Festive lunch.
I have managed to change the appointment and book blood appointment for a few days before, that’s my morning gone.
Also my festive decorations are going up early this week as a friend who lives in Australia is paying a flying visit.
Look after yourselves and please do keep posting how you both get on on Friday
Day 160 ish post transplant I think… we went back to hospital on Friday for our first visit since the start of November… a glorious whole four weeks. His bloods looked great so that is nice and we went for Nando’s afterwards on our way home .
He is doing pretty well, he is experiencing itching though intermittently and his consultant is not sure if this is potentially Graft-versus-host-disease or not. He’s been given a different type of piriton and under instructions to keep an eye on it worsening or other symptoms such as stomach. It has coincided with the colder weather but can also be triggered by drinking a hot drink. He’s trying out different tactics to try to prevent or reduce it.
Other than this, trying to enjoy some Christmas related activities safely and especially when outside. Today we are off to a Christmas market outdoors near by which will be very nice. Tomorrow it is one of the kids birthdays, it is really nice that he can be here as last year he had to be in hospital for chemo.
Hope everyone is doing ok too? We don’t have to go back to hospital until January 10th so providing he feels OK, we might be able to have a non medically focussed December. On 10th Jan we will have his next (quarterly biopsy) and blood checks.
Oh @Toadmum a non medically focussed Christmas sounds good to me.
Nando’s sounds a good place for a celebration to me.
Enjoy lovely family celebrations, keep posting
No medical updates here… enjoying the run up to Christmas. He has been able to join me at some of the kids Christmas activities at school which I had to go to alone last year. I feel very grateful that he’s been able to stay alive to see it.
Dramatic but you know what I mean. Tomorrow isn’t promised but thankful for today.
Still experiencing the itchiness but it seems prettt steady. He’s also started his vaccination program too!
Tired but had a lovely Christmas! I am mentally finding this time of year difficult, unexpectedly so. I don’t know if it just brings back memories from last year and unknowns or the thought of another year on this journey.
Either way, I am trying to be kind to myself as always.
Husband is doing great and feeling well. He goes for next biopsy in mid January and bloods then too. We haven’t been for blood checks since end of November which is so nice but unnerving!
Oh @Toadmum I find this time of year is so stressful and I have nothing to feel stressed about in the scheme of things.
The ‘happily ever after’ TV and adverts, the memories of the holiday seasons past.
I was diagnosed just before Christmas 21 yrs ago and I remember feeling in a bubble with the world celebrating around me and nobody mentioning the ‘elephant in the room’, including me, of my leukaemia.
I have learnt that 7 out of 10 is good enough, but at this time of year the expectation I put on myself is 10 out of 10, the hostest with the mostest.
I reckon my thoughts and emotions feed on something to worry about and the ‘what if’s’ creep in.
In saying all that I have really enjoyed my holiday season and for the first time in my life we went out to a local pub for Christmas dinner. They did us proud and it was perfectly cooked and meant that hubby and I could have different choices.
I think my New Years Resolution needs to be to work on my gratitude!!!
A very happy new year . No news from us at present which I feel incredibly grateful to be saying. We go back to hospital on Jan 10th for a biopsy and blood checks which will be our first visit since late November, all being well in the meantime.
Kids off school until Monday so making the most of the holidays until then.
We had our hospital trip today. Bloods looking great. We are due to go back in February for our next check. Had bone marrow biopsy this morning ~ waiting for the results but keeping fingers crossed. We are somewhere between 6-7 months at present post Bone marrow transplant!
Wishing everyone a good weekend and hope everyone is doing well.
I’m doing good thank you. Approaching five months since my stem cell transplant now and been feeling good and pleased with good fitness levels and not suffering much in the way of bad side-effects.
Latest bone marrow was negative at day 100, which is good. Chimerism levels have been causing me anxiety as they are lower than we would want but the doctors say it may be because I only came off immunosuppressants (cyclosporine) just before Christmas, so they want to see what the next chimerism test shows before deciding if action such as a donor lymphocyte infusion is needed.
Physical appointments including blood tests are now fortnightly and I have a virtual appointment with the transplant centre every other week.
Working my way through vaccines too and feeling eager to get out and about a lot more but just waiting for the green light from doctors when it is safe to do so.
. No news from us at present which I feel incredibly grateful to be saying. We go back to hospital on Jan 10th for a biopsy and blood checks which will be our first visit since late November, all being well in the meantime.