Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Avatar

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Please read the house rules and keep this community safe for yourself and others.

Tom

About

Username
Tom
Joined
Visits
40
Last Active
Roles
Member

Comments

  • Thanks Billie and Steve, My transplant was April 30th last year and I feel very fortunate so far that everything is going well (long may it continue) As you say 4 tablets is nothing to the amount we were taking not so long ago. I've had a few upsets just recently with feeling guilty that I'm doing ok whilst a few beautiful…
  • Hi everyone just a quick update have finally come off the steroids and the skin rash is easing all the time so now just plenty of moisturising cream. Am also now down to just taking four penicillin tablets a day. Have also started playing walking football and enjoying every moment even though it takes a week to get over…
  • Hello everyone just a quick update, The consultant last Friday upped my Steroid tablets from 30 to 40mg a day plus a strong anti-histamine (Fexofenadine Hyrochloride 120mg) and so far I have to say it seems to be easing. I go back Friday week and they’ve said they will take a biopsy if it hasn’t started to get better so…
  • Thanks Steve, likeyou have tried everything cream wise but not E45 bath oil (used Oilatum, Aveeno with little effect) Even the chip fat (Hydromol) which never dries! The nightime is the worsed. I've put the steroids up to 30mg yesterday instead of 20mg so hoping by Friday it may ease fingers crossed. Apart from this I feel…
  • Quick update.....Have had a few prolems with dry skin (lots of E45 Diprobase etc etc) a month or so ago which has now turned into a spotty rash can't stop scratching (skin also feels waxy) Sent pictures to the hospital in Leeds over the New Year (due to go back next Friday) They've put me on steroid tablets, steroid cream…
  • Hi Diesel, I'll join you on the bench also, I have to say i felt so relieved when i went to the hospital after the bone marrow biopsy thinking please be alright and when she said everything is as it should be i jumped up and kissed her with tears in my eyes. Feeling good at the moment no skin problems still have swollen…
  • Many thanks Chiara,put me down for every event :-) hoping i'll be feeling 100% then.
  • Last Friday at my latest check up appointment (Two weeks ago I had the bone marrow biopsy) was told my bone marrow is as normal as it should be at this stage. No leukaemia and I'm 100% donor - and no sings of the MDS woohoo. Thanks to all you guys who helped me along the way now my time to help others who may need…
  • Hi Steve, Only problem I have at the moment is my ankles swell after walking the dogs so like you said its feet up in the afternoon and a nap. Yesterday at the hospital (Day 47) the registrar said my blood is now 98% of the donors so am hoping that's a good sign. He also said next week they'll start to reduce the…
  • Hi Steve, I too have had a little problem with GVHD causing a skin rash on my arms and legs but after using steroid cream it is fine now. My biggest problem at the moment is getting all those tablets down every day. The dogs help me keep as fit as i can but need to rest in the afternnon as wether it's to much walking or…
  • Many thanks Peter, I check my temperature daily and so far it's never been over 37.3 My wife keeps telling me not to push myself too much and to keep washing my hands. I'll keep in touch over the coming months. Best Wishes Tom
    in New to the forum Comment by Tom May 2016
  • My first transplant was put back as the donor couldn't commit until the end of May so the Professor went for the second donor (still a 10/10 match) Had my transplant on the 29th April and apart from a terrible rash with the campath chemo everything went well just a case of getting the Cyclo Sporin levels right. Allowed to…
    in New to the forum Comment by Tom May 2016
  • Hello Peter, Many thanks for your reply like you it was a total shock when I was diagnosed so much so I was telling them they had the wrong notes and all that was wrong with me was I was anemic, I was walking my two dogs for an hour every day, gardening, hedge trimming etc etc. Even today I've cut my lawn and still walking…
  • Many thanks Steve, Really helpful and I read most of your posts to people this morning giving them support and information. (Really kind of you) I spent from September until last month in and out of Castle Hill in Hull having chemo and waiting daily for the nurses to put up my daily levels, nothing better than seeing my…