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  • Thank you 😊
  • Thank you all this is good advice. Yes I have always been careful and tried to stay out of it as much as possible and frequently use sunscreen. I covered up with.jumper and trousers and blanket and sat in the shade. Thanks I didn't.know sun flare…
  • Thank you. I will mention to them thanks. I don't want a repeat of shingles it is alful. I take acyclovir 3 times a day 400mg thanks
  • Thank you
  • Thanks My doctor is less organised. That's good to know I might ask about shingles vaccine as I had a nasty case of this before.
  • No worries I know any change definitely throws me. I've been going through this for few years had my transplant in august and still feel very tired and breathless it is a bit of longer recovery than I originally thought. I'm really appreciative to m…
  • Hi Mel I'm almost 7 months past allo act for non hodgkins lymphoma. My experience of pentamadine was something they gave to me once a month to prevent lung infection using inhalation. It's was simple I just had to sit in a private room for an hou…
  • Hi I had neuropathy in my hands a year after chemo.it started in one and moved to other. I saw hand specialist and neurologist. I think neurologist is right person to see. Mine was more to do with numbness it wasn't painful but restricted my u…
  • Thank you I was off them after 3 months. Then started the steroids when I couldn't eat before december. Does anyone.know of alternative or help with nausea? I used to get extra injections at the hospital while I was inpatient to deal with it. It's g…
    in Oral thrush Comment by Laulau1 March 6
  • 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
    in Oral thrush Comment by Laulau1 March 6
  • 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 th…
  • 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 qu…
    in Oral thrush Comment by Laulau1 March 6
  • Aveeno cream is good I use.this most days.
  • 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 stero…
  • Thanks Steve I have those side effects
    in Weight Comment by Laulau1 February 16
  • 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…
    in Weight Comment by Laulau1 February 16
  • 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…
    in Weight Comment by Laulau1 February 16
  • 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
    in Weight Comment by Laulau1 February 15
  • 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
  • Thanks Michelle that's really helpful I will contact the dietician.
    in Weight Comment by Laulau1 February 13
  • 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 da…
    in Shingles Comment by Laulau1 February 10
  • 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
  • Hi I spoke to my consultant today and she wasn't worried said it's gvhd. It was one area very small
  • That's great Michelle
  • Brilliant news 😊
  • 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
  • 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.
  • I hope they will be in contact soon. I think it will be a good thing another step closer to normality.
  • 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. 🤣
  • 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.