Good to hear from you! Glad you’re making progress with your baby jabs - I’ve got my last one next week, which I’m so pleased about. Have you been ok with them? Hope so.
Sorry to hear about the side effects of the anti-nausea drug - seems we go one way or another on that front during our recovery. Great that your energy levels though are doing well - that’s always a good sign, and it’s wonderful to feel that energy again, isn’t it?
Yes, it’s frustrating (and sad) to see the high death rate just as restrictions are eased. And the case numbers are shooting up already. I can remember a time when I was aghast at deaths being at that level. Well, I still am, but far fewer people seem to be. I’m definitely continuing with my mask too, and am waiting for this wave to peak and die down before I loosen up and live a little. To be honest, I think a lot of people have been distracted from monitoring the covid situation and their behaviour regarding it, because of the Putin situation - which is understandable, but an unintentional mistake, I feel. Ah well. All we can do is try to find a balance between protecting ourselves and living a little.
Hope you continue to make progress and can enjoy some spring weather, at least. X
I know waiting the 6 weeks is def the best thing to do for my family 100% without question.
I didnt feel when i met with the transplant team that by doing that i was taking a risk. They had basically said to me you have 2 options 1. End of April 2. Mid June
Its just my consultant has given me the best of care over the last 5 yrs so I value her opinion and even though she said she would go along with whatever the transplant team had agreed she did say delays mqde her uneasy.
But look I will talk to transplant co ordinator on Monday and say exactly qs you said in your post above and take it from there.
Hi,
glad your energy levels are better and oral chemo going as well as can be expected.
I had my latest chimerism result last week and it’s now climbed to 88%…I’ve got to go back in for another lymphocyte infusion in a week which will hopefully push percentage up again. Always nervous about increased risk of graft vs host disease as so far I’ve managed to avoid some of the more serious symptoms, albeit really not slept well for since diagnoses, treatment and now due to mouth ulcers/dryness. I’ve still been venturing out fully masked, with hand gel and have noticed that the majority of people are now either not wearing them or wearing them incorrectly under nose! However I cannot let the ‘fear’ stop me trying to live my every day life as I have been in recent months, I just mentally risk assess every environment, avoiding public transport and busy places Sending you and everyone a hug
Hi Mawdsley22,
Yes I had stem cell transplant in November 2020 following a diagnosis and treatment for Acute Myeloid Leukaemia and Myelodysplastic syndrome (MDS).
For the purpose of the transplant I had a week of intensive conditioning treatment and was then moved in room with airlock for my transplant. I was in hospital for 3 weeks post transplant. They let me out earlier than some as I was stable and lived close by to hospital so able to go in regularly (I think it was ever other day at first) for monitoring etc. My donor was unknown to me as my brother was not a match.
I’ve had a good recovery and have dealt with all medical probs. I’ve had three donor lymphocyte infusions to get my chimerism to 88%, so getting there slowly. I hope all ok with you? And wish you well
Well, getting there I hope🤞
I had colonoscopy yesterday., (bit of a mess up they gave me the bowel prep 6 hours late) as was passing blood and they have discovered that I also have ulcers in my large bowel.
They introduced another antibiotic, which makes 3 I am on and now wait for the biopsy results.
High temp, blood loss and diarrhoea seem to have sorted themselves,
They are looking for cause of ulcers, infection/Graft-versus-host-disease,
They did mention discharge today which has got me excited.
I’ve managed to creep up to 46 kilo but still need to put another stone on. I’m still on the TPN which is the liquid food and I hardly notice it’s there. It goes straight through my picc.
Has anyone else had problems? I think @Fullofbeans you mentioned you had ulcers too.
Everything crossed you get home today!! So glad to hear everything’s calming down at last - what a relief.
Yes, I had bleeding, infected areas that one person described as ulcers and another as an area of infection. Mine was caused by a Clostridium difficile (C.diff) infection, which itself had been caused by long-term use of antibiotics wiping out my good gut bacteria and allowing the C.diff to thrive. I hope they tested you for this some time ago - it’s a common problem amongst transplant patients on long-term antibiotics.
Best of luck getting discharged today, or very soon, at least. And I hope you quickly get your appetite back. X
I have my fingers crossed that third antibiotic helps and you are now at home and heading quickly towards more weight and healthy recovery!
I’ve had bottom problems - mine due to the ondansetron I’m taking to prevent the sickness following the chemo that’s 14 days on then 14 days off. .
Taking it for 14 days consecutively my lacerates my bottom and it’s not getting time to heal completely before I’m taking it again. Trying another gel to try to heal it.
Also have had dry mouth with ulcers, so using mouthwash and also dabbing tcp on to them. I smell nice
But minor issues. And am back for second of baby jabs tomorrow.
We will get there! Xxx
Oh @ChrisCKW and @Summertime I love the musical interlude, I am going for Van Morisson’s Born to be free.
Oh, I do love the words this forum won’t let us post and most of them seem to be on this thread, I wonder why.
These might be minor issues, but they sure don’t feel like it at the time !!!
Be kind to yourselves.
Ouch @ChrisCKW that sounds painful . I’m using sudacream, that seems to calm my bott down.
Aww lovely MattMonroe. I remember my mum and my Nan playing his record top volume and singing along. Precious memories😍
No not home, had another bleed during night, just annoying now🤨 @Fullofbeans sounds similar, altho I’m sure they told me I was neg for that. I will check tomorrow. @Erica thanks for your lovely thought always
Hi @Mawdsley22 I spent three weeks in hospital for my transplant. One week for the effects of the chemo to take hold and two weeks in isolation for my transplanted stem cells to repair my body and my immune system. I was a self donor. I found the donor part the most difficult as it went on for hours and was very uncomfortable and I had to do it 3 times as they found it difficult to extract my stem cells. Once I left hospital though, I recovered very quickly and was back at work in two weeks and travelling abroad a week after that.
Hi all am waiting to collect our 13 yr old little lady and go for wig appointment. Feeling a little anxious but really want to make it a light hearted event for her. She wanted to come as I was threatening to go pink!
I decided to go for the transplant as soon as the hospital is ready. It was a difficult decision as the other option was to wait for my sons exams to be over. I really wanted to do that but i was too afraid things would change for me in the mean time. Had a long chat with our wonderful son who really wanted me to put my health first.
Am hoping to have a rough plan in place next week so lots going on and ahead over the next couple of months.
Hi @Ashob oh, please let us know how your wig appointment goes, Go on go for the pink one, I can tell that is what you want to do.
Please also keep us posted on developments things really seem to be moving now, it is really getting real.
Look after yourself
I hope all ok with you? And wish you well
lacerates my bottom and it’s not getting time to heal completely before I’m taking it again. Trying another gel to try to heal it.
. I’m using sudacream, that seems to calm my bott down.