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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, Newbie Introduction

Hi,

I'm Sean and I've just been diagnosed with MDS. My consultant says it Refractory Anaemia (no blasts) although we are still waiting results from the cytogenetic test results from Kings.

This has all come a little out of the blue, i was seemingly a perfectly healthy active and 38 year old who enjoyed road cycling. I have a young family and we are coming to terms with potential prognosis.

My blood tests have shown that my platelets are very low (6 at first count) and also my red blood cells are affected (75 at first count). I have already been in for several transfusions although i am hoping this will calm down once the doctors have got to understand how body is coping.

I have been told i am perfectly able to work and even be active (return to light cycling) as long as i am not 'overdoing it'. Much of the the problem is a mental thing where i've lost a bit of confidence as clearly i dont know my body and it's exhaustion signs quite as well as i thought.

I would appreciate to hear any guidance from people in a similar position.

Thanks In Advance


Sean

Comments

  • Sean,

    Welcome to the forum and I am sorry to hear of your diagnosis, I went through a similar thing 3 years ago now when I was diagnosed with hypoplastic MDS which was picked up following routine blood tests. I was older than you at 63, with a grown up family of three. I had retired once but was working self employed 3 days a week and not really thinking of retiring. I actually enjoyed the work I did, I had no idea I had a health problem so it came as a shock to me too. My wife and I had a busy social life of holidays, walking, eating out and were involved with grandchildren.

    I too had very low platelet levels which were dropping weekly and was having platelet transfusions. It was made quite clear to me at the onset the only cure was a stem cell transplant. I do remember being told to avoid any DIY or other risky activity. I also carried on working and until 2 weeks before transplant.

    I agree there is a mental issue, there was so much information to take in. I'm glad to say we were given lots of info both verbal and in booklet form which really helped. Don't be afraid to ask questions of your medical team, we found it useful to make notes and jot down questions to ask. We were also given the option to speak to a transplant patient, we didn't take up that option but I have since spoken to patients awaiting transplant and it has been helpful to them. Maybe Kings could offer you that option.

    There are lots of members here who I am sure could offer you help and support along the way. I hope you keep in touch and best wishes for now.

    Peter
  • Hi Peter,

    Thanks. There indeed is an awful lot of information to take in especially as my wife's sister is a medical writer who has subsequently been searching for all sorts of medical papers on the subject.

    Although looking on here, you see younger people when i was originally looking, there seemed to be very little on younger people with MDS.

    I am hoping my blood levels may normalise, i was in for blood test today and they held up well over the weekend. So far, it's looking like platelets on a weekly basis. My red cells were down at 68 10 days ago but after 4 bags, 2 a piece on the last two fridays, it is now sitting up at 117. I am quite pleased with that.

    Still no cytogenetic test results though as it appear they're struggling to cultivate the cells.

    It is good to know work should be no issues, i'd like to get back on my bike too, even if it is just for a sedate flat ride.
  • Hi Sean, MDS UK is probably the place you need to go. There is an MDS Community page where sufferers have just your sort of questions. For the record, I had MDS (RCMD) which became quite aggressive. In 2010 I had 3 bone marrow transplants. Today, I have a normal life and run the odd Marathon
  • Hi 3xBMT,

    Thank you for your reply. i will look on the MDS Uk website.

    I am still in my early days so currently under my monitor phase and have just been referred up to Kings with suspected:
    1. Thromboctopenia
    2. Hypoplastic Myelodysplasia.

    To date, my it's the platelets are the big problem as i'm need a transfusion weekly where as my reds only seem to need transfusing every 3/4 weeks. As i'm in the monitoring phase, i am keen to try and maintain a level of fitness as i could be in monitoring phase for some time.

    Sean
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