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Are you or your loved one experiencing GvHD and want to talk about it? Come and join us in Manchester on 15 November 2019.

Go to 'National GvHD Day' discussion for more information

NeilSal

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NeilSal
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  • Hi all, Shortly after my transplant in 2014, I sent a thank-you letter to my donor (via my CNS at the hospital). A couple of years later I sent another card (via CNS/AN), but did not receive a reply, so thought my donor just wanted to remain anon…
  • Hello Lyndsaylou, I am sorry to hear that your husband has developed oral GvHD. From my own experiences, oral GvHD started 6 months after my transplant. Firstly, the inside of my bottom lip blistered up, then shortly after that the whole of my…
  • Hi Nigel, I did have altered food taste for a short while post chemo/SCT (I couldn't eat carrots or tomato soup in particular!?). I also could't eat spicy foods or citrus fruits, however this was due to mouth gvhd & ulcers. 5 years on s…
    in Taste Comment by NeilSal June 12
  • Hello Jhon, My story is similar to Tony's. I was diagnosed with ALL (Philadelphia positive) in November 2013 when I was aged 39. I underwent 3 rounds of chemo at St Barts Hospital, before going straight for a SCT in April 2014. My unrelated donor …
  • Hi Paul, welcome to the forum. I'm 4 1/2 years post SCT following treatment for ALL, so just a year behind you. I'm glad all is fine with you and that progress is going in the right direction. I'm doing pretty well but still go to St Barts hospita…
  • Hi Lindsay, Yes of course, you can contact me and I will be pleased to help answer your questions/queries. I hope your husbands conditioning treatment goes to plan on 14th September. Chat again soon, Regards, Neil
  • Hello, I echo the other comments and am sorry to hear about your friend. I had fellow patients who passed away after their SCT in 2014. This upset me and I was worried what the future held for me personally post SCT. You mention that your doctors …
  • Hi Rachel & Steve, Many thanks for your welcome comments. I still have chronic GvHD effecting my mouth & eyes, but you just find a way to live with it and manage it. The hospital monitors the issue anyway through regular check-ups. I don'…