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Laulau1
Hi Michelle
How you doing? I'm home now after 2 and half week stay in hospital. Doctor was happy to discharge me.feeling a lot better x
Comments
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Thanks Michelle Yes I've noticed the dip in energy, interruption of sleep. Ive had breathlessness too. Couple.of weeks ago I did my first walk outside my house. It was evening so no one around felt good. I hope your doing okay. X
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Hi I just wanted to add group six of priority groups covers carers. It is put in as addendum on the goverment website. If you rely on a person for full time care so if they got ill you wouldnt be able to cope they may be able to get your carer the vaccine. Speak with your doctor. I'm six months out and reliant on my…
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Hi Hope your all doing okay. I stopped the steroid as was having the worst mood swings and unfortunately mouth gvhd came back I've just started taking immumospressant again on half the dose I had whilst in hospital for last 5 days. I'm feeling quite fatigued again, did anyone else have with.immunosuppressants?
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Aveeno cream is good I use.this most days.
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Hi Hayley Thank you for your message. Yes there has been a big improvement it's not fully gone but with steroids I've been able to eat whole goods. I just had short course from 40 to 2.5 over 4 weeks. I did have some disturbing effects from steroids anxiety confusion and hysteria. I'm now take steroid mouth wash 4 times a…
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Thanks Steve I have those side effects
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Hi Michelle I'm really sorry to hear you have had long term effects from the steroids. I just remember experiencing lot of fatigue and low energy the first 3 months with that. I was in intensive care for a week so they could of been part of it. My consultant started tapering me off them so I finished at about 3 months.…
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Thanks Steve can I ask how long you were on steroids for? I've been high dose slowly reduced on them 3 weekish. I've had some disturbing side effects which my nurse told me was the steroids so hoping to finish this week on 5mg every other day. My consultant happy for me to do this but is bit worried the fungal mouth…
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Thank you yes my mouth has improved a lot and on steroids and nystatin so definitely hungry and yes with fortisip mixed with banana and 3 meals a day I'm steadily putting on weight. I hope both you and your partner are doing well
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Hi Michelle Thanks he works from home. Yes we do all this and he wipes down shopping with disinfectant and all packages. Hopefully this will change
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Thanks Michelle that's really helpful I will contact the dietician.
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Hi I have had shingles after my first year of chemo treatment. It is really horrible. They say to contact your doctor straight away so they can give you medicine which quickly helps. I had for around 2 months and used calamine lotion 3 times a day eventually it stopped I had a few scars. Also it only covers 1 half of your…
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No not really I had a bit early on mild skin gvhd and used steroid cream and got it sorted quickly. My skin can get quite dry and flaky if I don't moisturise. Thanks guys
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Hi I spoke to my consultant today and she wasn't worried said it's gvhd. It was one area very small
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That's great Michelle
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Brilliant news ?
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Hi yes I was initially quite nervous being 5 months post transplant and having gvhd. I found a chat with my consultant really reassuring and the link Steve kindly published. Stay safe x
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I had Oxford vaccine couple of days ago and so far just a bit of a arm ache all I had. My consultant assured me this was safe and a lot of post transplant stem cell patients have had this done.
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I hope they will be in contact soon. I think it will be a good thing another step closer to normality.
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Hi Michelle I'm feeling I super anxious was going back and forth to hospital for most of the lockdown and now am waiting on further result after the allo which probably get after Christmas. ?
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Thank you all. I bought a toothpaste without the fizz and a soft toothbrush. I am eating soft foods nothing too chewy. Hopefully it gets better soon.
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Hi everyone This has been a very strange year. I am very pleased to be at home this Christmas. Last Christmas I was away from home just finishing cart t treatment made it out just before Christmas Eve.Very kindly a friend lent us her flat while she was on holiday so we made the best of it with a Cook Christmas meal. I…