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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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Hi guys I hope your keeping well. Just wanted to leave a quick update. This week I'm 3 years on from my donor stell cell transplant. I've recently joined the gym and working on my swimming Laura x
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Hi I am due to have my mmr at 2 years which in few months approaching as advised by my consultant I was on immunosuppressants but not for few months now and now have mild gvhd skin rash every so often which I use steroid cream for.
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Hello Glynis I had a donor stem cell transplant in august 2020. I agree with what the others say. The doctor will tell you all eventualities and it doesn’t mean it applies to everyone we are all individual and are treated this way . I found recording conversations I had with the doctor useful even did this when I was…
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Hi That is really tough situation to be in sorry to hear this. I would also be interested to know if it was available. I may have this wrong my understanding was you could receive a live vaccine after 2 years from transplant but not sure if being on immune suppressants affects this. I know I have to wait up to 2 years post…
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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 scalp application which seemed to work well on my scalp Take care
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Hi I just received text inviting me for third dose from the Marsden so hopefully others will hear soon Laulau
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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
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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 it has a letter attached which blood cancer uk advised some have found useful…
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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 is pszizer. I have been shielding and find when I'm out people are not clear of…
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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. Anything I worried about I would send photo to my specialist nurse. I found this…
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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 square one with shielding. Does anyone know if there is a campaign to help…
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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
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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 year from transplant and on 3 250 immunsuppressants just down to 2. Has anyone noticed…
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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. I went for m first meal with Hubble outside in restaurant today in tepee tent.…
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Using a sensitive toothpaste without sls in will really help. I use zendium but there are others.
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Hi guys just tried factor 50 sensitive kids suncream ambre solaire worked a treat. First time I didn't get burnt x
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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 ?
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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 transplant is a chance at a fresh start. I was scared too at the time after speaking to…
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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 cottage and looking at meal ideas like taking some food with us and maybe order…
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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 round?
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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. ?
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Thank you ?
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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 flared up gvhd more good tip. This was my first day out when it's been sunny. I…
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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
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Thank you
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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.
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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 my donor and all nurses doctors that look after me. I hope your husband is…
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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 hour inhaling oxygen through a face mask for about 10 mins and pentamadine maybe…
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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 use of my hands to the extent I couldn't open my front door or put on earrings.…
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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 got worse again with immunosupressants thanks