Everything crossed for the MRD result @Fifimac. If the other results are good, that’s an encouraging indicator. I’m sorry you’re having to wait for that final result - never nice.
Yes, my chimerism varied a little in the early stages too. Later on, it fell more over months to 84% and I had to have two donor lymphocyte infusions (DLIs.) I felt a bit worried about that, but the consultants weren’t, and said two or 3 top ups usually sort it - and they did indeed. So don’t worry too much if it ever goes on a downward trajectory. Strange that we’re that fabled creature the chimera, isn’t it? And has your blood group changed? I’ve gone from A+ to AB! A very peculiar thought.
Yes, we’ve got still, damp weather too now. I can still visualise Kirkcaldy - it’s a nice town. In fact, I love Scotland over all. I often dream of a little highland cottage, or life on one of the isles, because the wild, rugged scenery is like Cornwall, but on a more massive and impressive scale.I love it! But obviously, being near a decent-sized hospital is important for another couple of years yet, so my castaway fantasies must stay just that.
Glad you’re slowly getting off that cyclosporin. It’s like sniffing a yeti’s feet every morning, taking them. Any signs of Graft-versus-host-disease? I hope not.
Yes, all good here thanks. Have been doing some decorating, so am temporarily white haired.
I agree. I can’t thank you enough @SarahMum for taking the time to write all of it out. It feels so nice to know we’re not alone.
@Erica I know just what you mean. I find often I’m crying when driving at the moment. I guess maybe because it’s the one time that I can’t distract myself with other tasks or caring for someone else! I also find myself getting more frustrated when things don’t do what I want them to… yesterday I couldn’t get the zip done up on my child’s coat - argh, I could almost feel the tears building. I’m trying to counter act this by giving myself a lot more time to get to places / do things / doing less things than I would usually so that feeling doesn’t build up too much.
Quickly replying to you, when your message came in I was having a late breakfast & watching Ben Fogle.
He was visiting the Orkney Islands and I thought how lovely it would be to live in such a place , the scenery , the history etc. ( similar to your castaway fantasies )
Then I thought , how do people cope if they’ve been diagnosed with a disease like ours or such like. Living so far away from the medical care that is such a big part of our everyday lives now !! The carefree side of our lives has been curbed somewhat now.
My blood group was O neg before transplant and I am now O pos !
Fife is a certainly a beautiful part of the world , I am not native to Fife, I am originally from the West coast of Scotland, I moved here when I met my partner. I have never been to Cornwall but I did live in Devon , Torquay to be exact many moons ago , I worked in a hotel there for a year and absolutely loved it. The locals were so friendly.
Yes, I am off of the Cyclosporine now, finished then yesterday. They do have a very distinctive smell.
No signs of any Graft-versus-host-disease , but Consultants have said this could show up at any time and particularly when coming off the immunosuppressants.
Hopefully not
Good luck with your decorating. We are having our grandson for a sleepover tonight ( he’s just over 2yrs old ) first time he’s stayed over for a long time. So he will keep us both busy , he is a wee tonic.
Day 10 of chemo (cycle 1) today so isn’t that something, a milestone if we do say so!
Nothing out of the ordinary to report today. Still eating and drinking a lot of water. Side effect is a bit of a sore throat.
Ready now for lots of monitoring I suppose, and starting the midostaurin!
We have had day 10 in mind as our date / moment to work towards so need to re-think that now. It’s a bit tricky as I understand timings for the next part of the journey will depend on how his body responds and how quickly.
A good day for me. Kids have had a nice day. I’ve got myself organised for the next 5 days of school and watched a film in my heated blanket this afternoon.
Gosh, you put me shame, what a day @Toadmum, but I expect emotionally, physically, practically satisfying.
I am so impressed with you watching a film in your heated blanket this afternoon,.
I am watching Strictly in my onesie, does that count, oh, it is snuggly?
I seem to be trying to catch my tail. Although I have achieved a lot, but why do I focus on what I haven’t done!!
Really do look after yourself.
How’s you ?
You certainly packed a lot in yesterday , however with two kids you have to be organised.
Glad you got some “‘ me time “ and chilled on the sofa with your heated blanket
I love my Oodie , so cosy too.
Day 10 of treatment , that is that hurdle out of the way ! I hope your husband is feeling ok. Did they say he will get home at some point once they feel it is safe to do so ?
Well the sun has come out here , for how long I don’t know.
Look after yourself and give your husband my best wishes. x x
Hope Danae got on well! Sending best wishes to you both this evening!
It’s been a long and draining day here for me. I think for a couple of reasons. First, a full day in the hospital but also I moved him to another hospital where he will be monitored and continuing with his next sets of treatment. All went well, but I did feel like I was illegally breaking someone out of prison! New hospital very comfortable and he looks very settled. It is a longer drive for us than previously but worth it if he’s more comfortable I guess.
I have not been back home long so I am now tucked up in the blanket again! Early night for me and hopefully a good day tomorrow, with less nerves about the discharge / transition etc.
Finding any time that I am driving highly emotional, and often results in tears as I go. I guess this is because there is nothing else to think about but you can picture me regularly driving along roads with tears streaming.
Day 11 of treatment today, although ‘no chemotherapy’ but instead oral midostaurin chemo tablets.
Visited earlier and he was in good spirits and feeling well so that is a blessing for the day.
Nothing of event or excitement has happened today, although I understand the stem cell team are starting to look at matches including testing his sibling. I am fast realising that a boring day is a good day in the world of Acute myeloid leukaemia (AML).
Oh @Toadmum thanks for the update. I would say nothing of event or excitement is generally a good day,
Glad you had a pleasant evening with your kids and a lovely bath with essential oils impresses me.
I felt really rough today and dragged myself to Pilates and actually felt a lot better afterwards.
Right early night for me today, putting my bed socks makes me feel better!!
Self care is so important.
Glad you felt better after Pilates! Was it floor Pilates or reformer? Never tried reformer but it looks like it would be a great work out!
Hope you’re having a good day. Bit miserable here with the weather. Visited today and back home now. Thankfully another non eventful day. 2 x Top ups of blood, but counts are low where they should be and he’s felt well so far today.
Met lady from Maggies as well who was lovely. I shall certainly lean on them for support
Oh @Toadmum I am so glad you have met a lady from Maggies, I have heard good things about them. Yes, lean on them that is what they are there for.
Just visiting, however much you love the person, can be exhausting and can drain me emotionally, physically and practically.
My Pilates is floor Pilates, I have never tried Reformer either, although we have various bands, balls, rings, weights etc too!!
Non eventful is good, perhaps try and have a lazy evening, pamper yourself and be ever so kind to yourself.
Nobody asks about the carer apart from us on here.
Please keep posting
We’ve got a nice sunny but chilly day here in Fife today which is nice.
I got my MRD results and it’s showing as a very low but positive result !! ( this must be one of the few tests where we pray for a negative result )
My local Consultant says she’s not worried about it as the Cyclosporin has just stopped , but to speak to my Transplant team.
I had a video call today with my Transplant Consultant and she more or less said the same , it’s obviously not the result they wanted but it’s not a disaster. As I’m just off of the Cyclosporin that can mean my new Immune System will now hopefully take over and be able to sort out the remaining abnormal cells
It’s such a rollercoaster ride still , I wasn’t expecting an instant cure of course post transplant but I didn’t think there would still be so many hurdles to overcome.
Anyway, I am feeling so good physically that I’m going to make the most of this and try not to zoom in on “ the negatives “ I always pick them out and mull them over first , rather than enjoy the positives first.
I will get another bone marrow soon, they’ll see how that is and decide if there’s anything that needs done. Too early for DLI’s she said ,again because I’m just off the Cyclosporin.
I have my 2nd Covid injection to get later today plus flu injection also.
Oh @Fifimac I did relate to your beautifully worded paragraph
‘Anyway, I am feeling so good physically that I’m going to make the most of this and try not to zoom in on “ the negatives “ I always pick them out and mull them over first , rather than enjoy the positives first.’
That is me to a great big ‘T’
You also show the rollercoaster and so many hurdles so well too unfortunately.
Celebrate the small wins I say !!!
Yes, love to you and all xxx
Yes I think celebrating the “small wins” is the perfect way to look at it.
I know the anxiety & worry is always lurking but I’m trying to not let them run away with me.
The mind can play awful tricks no matter how hard you try to ignore it.
Hope you’re keeping well , I’ve just been a walk and although a bit chilly , it really is a lovely crisp day.
Had my two injections aswell so all good.
Thinking of you @Fifimac - I also agree with your comments. I definitely ignore so many positives and rest on the negatives, so I shall try to remember that. You’re doing marvellously.
Today was another quiet day for news. He is still feeling well, eating and drinking plenty. We’re not sure how long this will continue for, so I am thankful for this for now.
Every other day preventative anti-fungal continued today. Platelets expected tomorrow but otherwise another day on this journey completed. Still not sure whether a stem cell is required or not, it’s a 50:50 possibility at this time.
I haven’t visited today - went to work, had my hair done and spent some time with the kids. A nice dinner AND an early bath so I am looking forward to resting this evening.
Lots of love, and hope everyone reading this has had a positive day, or at least a positive moment.
Hi @Toadmum yes, it is too much to visit every day, you show how many other things you have to do like work and spending time with your kids, It is also so important that you look after your nutrition, personal hygiene, appearance and rest.
I am so impressed with you and be kind to yourself
Day 14 today, my mood has been better today which I appreciate as it probably won’t last. Reflexology earlier which is such a treat.
Patient is still feeling well, no side effects at this time. He’s still in hospital. There is a possibility he could be out next week prior to next round of chemo but having read lots of different threads on here, I’m not getting excited about that. We decided we would just see what the situation is next week and go from there. I think in different ways, we are both apprehensive about him coming home at this time.
I’ve not visited today but will be back tomorrow with children in tow. Hope everyone has a lovely weekend and thanks for all of your support over the last (almost 3 weeks).
X X
