So glad to hear how you are doing so far. Hoping that is continuing into the NY for you! We have been trying to avoid busy places with all the flu / bugs around. It is hard with our children as they are primary school age but we are in the flow of things much more now than we were this time last year.
Not much news from us which is great. We don’t go back to the hospital until 7 Feb and hope to get the MRD biopsy results then. Otherwise, he is feeling pretty well & trying to build up his stamina. He is still off work at the moment.
We are 463 days since diagnosis, 395 days since remission with FLAG IDA and 217 days since transplant.
I found early Jan quite hard as care giver / supporter. I felt heavy and low. I’ve tried to make some tweaks and feeling much better for now. I have tried to get back into reading more fiction. It has been a really nice outlet and distraction.
Hi,I am a 46yr year old mum of 3. I was diagnosed with Acute myeloid leukaemia (AML) on the 19th Dec 2024, a day after having a bone marrow biopsy. I will never forget that phonecall and was taken into Hospital the same night. I’m just coming to the end of my first cycle of treatment and have been in Hospital for just over 5 weeks now. I’m hoping to get home at some point before the next cycle starts . Its been tough but I’ve tried to take each part in chunks to help me deal with everything. Video WhatsApp calls with the kids have helped to stay in touch and try and keep things as normal as possible.
I’ve unfortunately picked up a few infections along the way with some pneumonia, bleed on the brain and now a blood clot. Had an op this week for the bleed but it just seems to be one thing after another at the moment! However, feeling positive still and its encouraging to hear so many encouraging updates and stories on this group!
I’m due to have another cycle of chemo then a bone marrow transplant I think but it’s often too much to take in to think too far ahead. Just waiting to see if my sister is a donor match
Hi @Debcosgriff I am so glad that you have found us, a great big welcome to our forum.
I cannot imagine what it was like for you being diagnosed, by a phone call, on the 19 Dec and then taken into hospital that night. Even more so being a mum of 3 just before the festive season.
I was also diagnosed at the same time of the year, and that was 21 yrs ago, and I can remember it like it was yesterday too.
You really have been through the mill since your diagnosis too.
Video WhatsApp calls are wonderful aren’t they.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
I am so impressed that you are trying not to think too far ahead and you have probably read it on here to try and keep it in the day.
Please do let us know if your sister is a donor match and I look forward to hearing more about you.
Really look after and be very kind to yourself.
Hi @Toadmum I was concerned to hear that you felt heavy and low in early Jan.
It sounds as if your ‘tweaks’ have worked.
I find the festive season absolutely exhausting and yes, I put on weight and feel yukky.
You mention Jan was hard as a care giver/supporter, any particular reason?
I am also trying to get back into reading, I am in the middle of a book and another book on my Kindle, both brilliant. It would be ‘me time’.
Be ever so kind to yourself and really look after yourself as well as you do everyone else.
Glad to hear it’s all going well for your husband and 217 days since transplant is good.
Sorry to hear you’ve felt a little down. Just remember that the partner/family has gone through just as much emotionally as the patient has so it’s understandable that there will be times of feeling a little down or perhaps a little anxious.
We’re looking forward to doing a lot of the things we enjoy and getting more normality but it still feels a long journey to that point and we definitely don’t want to rush it and risk setting back the recovery. So I feel it can be a bit of a frustrating time in the meantime, especially when the weather is bad and we can’t get outside much.
I also remember the days around diagnosis moving so fast, it was difficult to take it all in.
It sounds like you’ve had a stressful time dealing with these issues in your first round of treatment but the most important thing is you’re in the right place and getting the care you need.
It can be difficult not knowing the full treatment plan but your doctors will likely be wanting to see the best route to take depending on the response to treatment - whether it could be just chemotherapy or whether a transplant is a better route. I found it quite difficult not knowing the exact plan from the start but the doctors always stressed that every person is different and evert treatment plan will be slightly different, so they just need to work out the best route.
Hi Erica,
Thanks for your lovely message and yes, there’s never a right time to get diagnosed but Christmas is particularly hard. Hope you don’t mind me asking but since first diagnosis 21 years ago, have you been ok since ? I’ve also got one of the genetic mutations but not sure how that affects things going forwards but hoping that it can provide some targetted treatment .
One of my main issues at the moment is sleeping in Hospital and trying to get comfy with lines in. My picc line was removed yesterday as i developed a blood clot but still really painful with swelling etc and i seem to be constantly asking for pain relief! Hoping for a good night’s sleep soon!
Hi @Debcosgriff I have learnt to live with the symptoms I was diagnosed with but I have had ups and downs.
Yes, sleeping in hospital I have found is not easy and even more difficult with lines in.
I find the lack of fresh air challenging too.
Be kind to yourself and please do keep posting how it really is for you.
Hi Erica, thanks for the reply and glad to say i have had a better night’s sleep now the swollen arm is going down. Unfortunately my sister is not a match for a stem cell donor but they’re confident one can be found through the Anthony Nolan database
I had a bone marrow biopsy today and although slightly painful, was so much better than the first. Initial observations show that no leukemia cells present which is great news! Just waiting to go on day leave this Saturday and hoping I can have a longer stay soon before the next round of Chemo starts. Have been in Hospital for 6 weeks now looking forward to some home comforts!
Had my first taste of fresh air today other than transferring Hospitals in an Ambulance! It was lovely and something i appreciate even more. Sometimes its the little things that give you a well needed boost. I’ve also finally been taken off barriered protection in my room so can finally walk around the Ward.
Oh @Debcosgriff, sorry to hear that your sister is not a match.
Yes, there is nothing like home comforts, fresh air and escaping 4 walls.
I agree it is the little things that you really appreciate and for me they are often free.
Be kind to yourself and really look after yourself and please do keep posting
Biopsy clear inc MRD. Bloods good. Back in late March for bloods & April for next biopsy. Not too much other news with us. Hope everyone else is doing well!
Hi @Toadmum I reckon that is good news and good news is often briefer.
Really look after yourselves and post when when you can, your experiences are so valuable
Oh @Toadmum enjoy that normality.
Thanks for asking I am doing OK after slightly fracturing my pelvis at the beginning of December, I am building up my walking again and I am left with firing left glutes in my bottom and pains in my other leg, both slow to go.
Look after yourselves and I think many of us share the appreciation of so many of the things we took for granted before.
I am doing well thanks @Toadmum I had a biopsy on the tumour on my kidney last Wednesday. I have to wait till the 8th April before I get the results. xx
Been a little while here ~ everyone is doing well including me. We went back for 6 weekly check yesterday. Bloods looked good. Consultant referred to them as robust & it was the biggest compliment for my husband to receive I think!
We go back in 3 weeks for next biopsy & then again in a further 3 weeks for next set of blood tests.
They have raised the plan for venesections- looks like that will be on the cards in the next few weeks to start to remove the iron excess from the various transfusions, all being well. About 9 months post transplant now!
Other than this, we are doing well. I have loved the lighter evenings already, and a few days of warm weather. We are still not leaving the UK at the moment and I do miss feeling the sun!
Sending lots of love to everyone and hope everyone is recovering well!
Hi @Toadmum, great news and 9 months post transplant . The venesections, just one of the joys of having lots of blood transfusions but on the plus side they’re nothing to what your husband has been through. I stated them around the same time and had one every month for 2 years and a half years. I could have had them more often but the doctors were happy with the one per month. My level was over 3600 when they started and the goal was to get to 500. It takes time and levels can go up and down in between them. I realised that there was no point getting levels too often as it became frustrating when it didn’t drop quickly. Fortunately, I was always in and out in less than 30 minutes so managed to get the free parking, every cloud!
Get yourselves a holiday booked, it will do you good to get away.
Thank you @Muzza - we will start looking at holidays as we saw his consultant on Friday for the next 3 monthly biopsy! Top level is all clear and now to wait for the MRD. Fingers crossed!
Consultant was also happy for us to think about going away - probably not till the second half of this year but really nice to be able to start to think about!
We are doing good here - hope everyone else is doing ok. @Erica how are you doing? Sending love xx
Oh @Toadmum yes, you are doing good there.
The tumour on my kidney tested benign, but the consultant said not to be complacent and I will be rescanned in 3 mths and if there is any change I will be referred to a specialist hospital for more in depth tests.
I asked if it could have spread from my blood or skin cancers and he said not from my particular leukaemia, but it could be connected to my skin cancer.
So all’s well here, thanks. I await your holiday thoughts.
Look after yourselves
. The venesections, just one of the joys of having lots of blood transfusions but on the plus side they’re nothing to what your husband has been through. I stated them around the same time and had one every month for 2 years and a half years. I could have had them more often but the doctors were happy with the one per month. My level was over 3600 when they started and the goal was to get to 500. It takes time and levels can go up and down in between them. I realised that there was no point getting levels too often as it became frustrating when it didn’t drop quickly. Fortunately, I was always in and out in less than 30 minutes so managed to get the free parking, every cloud!