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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

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Laulau1
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  • Hi Lynsey sorry to hear your troubles. I'm just over a year. I have had really bad gvhd during the year which mostly affected my mouth and eating. Fortunately Its much better was on steroids and immune suppressants. I used betmethasone valerate s…
    in GVHD Comment by Laulau1 October 4
  • Hi I just received text inviting me for third dose from the Marsden so hopefully others will hear soon Laulau
  • I just received a text to get flu vaccine and just started my child hood vaccinations so haven’t booked in yet. Let me know how you get on and anyone else experiences. I hope you get your third covid jab soon
  • Hi Peter Yes not sure what happened there’s seems to be a lot of confusion. I received a link available on blood cancer uk site which states the immunocompromised to have a third dose 8 weeks after the second dose. I couldn’t copy the link but…
  • Hi Clare I hope you are well. I feel quite isolated from mainstream society a year after my transplant I am very vulnerable and having both astrazeneca vaccinations and no antibodies showing I am counting down days to my booster which I hope i…
  • Hi Im year past transplant in 2 days Like Michelle and Steve I have suffered with and still do with gvhd and I did get little of skin discolouration near my tummy. Very minor. Straightaway I was onto my specialist nurse as it is individual. An…
  • Hi Jen So sorry to hear your going through this. I'm almost 12 months past my donor transplant and had both astrazeneca vaccines and have no antibodies showing to covid. It is really hard with the proposed changes tomorrow I feel.like I'm back to…
  • Hi Michelle glad your okay. Can you tell me the name of the test please so I can see if my hospital will do this Thanks Laura x
  • Hi Michelle That's really great to hear about your antibodies I'm so pleased for you. You had Pfizer vaccination? Nhs are wonderful and we are so lucky to have them. To everyone I've now had 2 tests for antibodies both negative almost a yea…
  • Thank you everyone. I’m doing okay thanks I’ve been trying to push myself a bit more. I had couple of meltdowns on holiday one was at a gardens where people weren’t following the one way system but generally I was okay and did a lot of walking. …
    in Good news Comment by Laulau1 June 30
  • Using a sensitive toothpaste without sls in will really help. I use zendium but there are others.
    in Relapsed AML Comment by Laulau1 June 10
  • Hi guys just tried factor 50 sensitive kids suncream ambre solaire worked a treat. First time I didn't get burnt x
  • That's great Michelle and lateral flow tests help me so I hope it does you. Thank you I'm looking forward but bit nervous too enjoy the sunshine 🌞
  • Hi Jess I'm am very sorry and can understand your fear. I have non hodgkins and have relapsed 3 times after 1st chemo few years ago. I had my transplant last August after a clinical trial got me back into remission. I think having donor transpla…
    in Relapsed AML Comment by Laulau1 May 29
  • Thanks Tom I spoke to my specialist nurse and she said I would not have protection at this moment but sometimes cells are slow. I'm hoping after I'm off immunosuppressants I will have some protection. We are fortunate we're in our own separate co…
  • Hi guys to update I had my second COVID Astra Zeneca. I felt flu for 2 days by third day I could go out for a small walk. Definetly I felt better this time, last time it went on for a week. Has anyone had a test for their antibodies second time roun…
  • I'm having mine tomorrow oxford was meant to be Last week but got stuck in 4 hour traffic and then car wouldn't start eek. Be glad to have it and did my first contraflow test. My family are taking these regularly which also helps. 😊
  • 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.