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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Hi from new member

Hi all, a quick hello from a new forum member and unfortunately recently diagnosed MDS patient.
I'm in the Medway are of Kent and be nice to hear from anyone else in the local area, and of course other members in general.
All very new to me this and I probably have a lot of reading up to do but will most likely be back here with questions in the near future.
Regards
Ian.

Comments

  • Hi Ian,

    Welcome to the forum. You'll find plenty of support from everyone here so any questions you have please ask away.

    All the best,

    Steve
  • Cheers Steve. Be nice to hear from others on here.
  • It's pretty quiet around here at the moment Ian, possibly due to the holidays. Perhaps just you, me and the tumbleweed for now!

    I don't know much about MDS myself as I had Leukaemia. I'm fairly sure there are others who have had treatment for MDS though and they'll be able to share their experiences with you.

    Do you know what is in store as part of your treatment yet?
  • Early days for me but so far had 3 transfusions. That was a 2 unit one, then a 3 and then another 2. Going by the rate my levels then drop back i expect to have a coupe of units every 2 to 3 weeks. My consultant has referred me to Kings as they feel I would be suitable for a bone marrow transplant, and the appt for Kings has just come through for third week of Jan. That I think is an initial assessment by them as they are the ones who have to agree to it. Then of course it comes down to finding a donor and samples have already gone to Kings and AN in that regard for matching.
    In the meantime my understanding is that treatment is just the transfusions and IV antibiotics should i pick up any infections that I cant handle.
    The transfusions seem to be holding my haemoglobin between 75 and 95 (think 140+ is normal), am neutropenic as white cells very low, and platelets just under 20 (think the norm is around 100).
  • Hi and welcome to the forum sorry not to have got in touch earlier but have been struggling with a flu virus for the last couple of weeks and was admitted to my local transplant centre yesterday to get some I/v antibiotics and lots of anti flu virus drugs hoping to be discharged in the next day or so.

    I was diagnosed with hypo plastic MDS in early2012 and had a stem cell transplant May 2012 from an unrelated donor from the Anthony Nolan register.

    For me the transplant has been a success the only problems have colds and flu but it has always been dealt with promptly.

    I kept in touch with my donor by a letter following transplant and we actually met up a couple of months ago.

    Good look with your treatment and appointments. Do keep in touch and let me know if I can help.

    Best wishes
    Peter
  • Hope you are feeling better now Peter, bad time if year to have been admitted.
    I have a date now to go up to Kings to discuss treatment which is 3rd week of Jan, and the process I understand has begun in terms of donor search. Fingers crossed that has a good result soon and then the chemo prep can start. Cant say I am looking forward to any of it but needs must :)
    Hope everyone out there has a good a NYE as they can.
  • Thanks for comments above, slowly feeling better and taking 2 lots of antibiotics and 2 antivirals, should do the trick.

    I'm sure the search for a donor is underway and you can be sure you will be found the best match. The treatment is a bit grim but painless. Look at it as a new year a new you, you will be fine.

    Best wishes for the new year.
    Peter
  • Hi I was diagnosed with MDS that Was transforming rapidly to AML in November 1993. I was told I would need a BMT. I had blood transfusion every 2 weeks and started chemo in January 1994. I was very lucky as my older brother was a match. I had 3 intense courses of chemo in the January, February and April. In June 1994 I had Total Body Irradiation and my transplant on 23rd. This year marks 21 years . I wish you all the very best and hope that a doner is found for you. I totally understand what you are going through at the moment. Feel free to contact me if you have any questions
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