MDS, Refractory Anaemia and possible SCT but not possible I'm told.

FormerMember
FormerMember
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Hi all, I'm a newbie to this site although I've was diagnosed with MDS and within that, Refractory Anaemia in March 2015 . Doesn't seem to be much of that around- no group for that so I've been advised by one of the super caring moderators that this is the group closest to my condition so if you allow me in, I'll be happy to unload my problems with you.

Right, MDS is apparently rare, so I can add that to my other rare disease, haemochromatosis. In fact the treatment for that is a factor that brought my MDS to light. Btw I've also a B12 deficiency and pernicious anaemia has been mentioned in the past. I was having blood removed weekly to lower my high ferritin level (haemochromatosis) when I collapsed one night and I was found to have a low haemoglobin level-82! So began the quest which ended with the MDS (refractory anaemia) diagnosis. 

Well, for the last 18 months I've been injecting myself weekly with Aranesp which has helped my haemoglobin level although the general trend is slowly downwards, in fact it has dipped below 100 a couple of times. I've done a lot of research and frankly my future doesn't look good mainly because of my age-60 next birthday. I ran a question by my doctor about a bone marrow transplant and she said that SCT would be my best option BUT it probably wouldn't be offered because the operation would likely kill me! Anyone here could shed some light on this? I also have heart disease, diagnosed by my heart surgeon 6 years ago after a heart attack, followed by heart surgery (stent fitted). And I'm being treated for bilateral ulnar nerve problems, indeed just today I have received a date for my first operation - 19th October! 

So you can see, there are complications. Does anyone know of 60+ SCT, successful I hope? There's always hope, hence the username . 

Oh, one other thing! Almost forgot! Around the time of my MDS diagnosis I began to get back and leg pains which through all this got progressively worse, so bad that I can't stand or walk a little without severe pain. I'm now a wheelchair user and have to have a high daily dose of morphine although it's still not at a level that masks the pain. I have been advised by a consultant that an operation on my back wouldn't be of any help although he did offer me a second opinion from another consultant which I accepted and that's going to be in a couple of weeks. He, believe it or not is the brother of the surgeon who's going to operate on my elbow shortly!!

Sorry to unload my problems on you but I think they're relevant and if anyone is still awake lol can you give me hope please?

hope58

  • FormerMember
    FormerMember in reply to FormerMember

    Hi I did leave a comment for you over on the AML board but just thought I'd reiterate I was diagnosed with MDS RAEB in July 18 and by September 18 it had transformed in to AML with a FLT-3 gene mutation. I'm happy to chat to you about it any time as I also see your husband is expecting to see a professor at the QE in Glasgow who are also going to be handling my SCT in January. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi it's he QE at Birmingham queen Elizabeth 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi homealone just come across your post noticed 2017 how are you now if you don't mind me asking ?

  • FormerMember
    FormerMember in reply to FormerMember

    Please have a look at my profile. I update it every few months. But I'm doing ok thanks for asking. Tessa

  • I was diagnosed MDS RAEB2 in November 2015.

    i had to go private to get diagnosed as my previous GP refused to admit that my frequent sinus infections were anything other than bad luck, even when I started getting heavy nose bleeds. I asked for a FBC and although another doctor at the practice on seeing the results said I had a bone marrow problem my own GP dismissed this.

    The ENT Consultant I had been seeing on a private basis referred me immediately to a Haematologist. Blood tests Monday, bone marrow biopsy Tuesday and results Friday.

    I expected the worst and hoped for the best, it floored me when I was told I was incurable.

    I asked about a STC but was told at my age I was too old, 71 then.

    i have been treated successfully on the NHS with Azacitidine, 5 days in every 28.

    last week I completed my 54th monthly cycle, although I’m knackered for a few days after treatment I soon recover.

    in fact for someone who is terminally ill I feel very well.

    I can imagine your husband and yourself were shattered by his diagnosis as I was with mine.

    Dont give up hope, I read a very good quote by Franklin D Roosevelt “ when you come to the end of your rope, tie a knot and hang on” That’s my mantra.

  • Hi  and welcome to our corner of the Community.

    Sorry to hear that you were classed as being old for SCT, the Centre where my two SCTs were ‘done’ now see 71 as being an ok age to go forward. But great that your ongoing treatment is doing the job for you.

    Love your mantra.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Goldtooth

    Hi Goldtooth, it is great to know you have been doing well on treatment, were you given a prognosis on diagnosis ? My husband is going to be starting chemo soon then may be a stem cell transplant.

  • Yes I was, my prognosis was poor.

    I think my Haematologist is rather surprised that I’m still alive, me too.

  • FormerMember
    FormerMember in reply to Thehighlander

    Hi again have you ever known of any one not responding to chemo ?

  • Hi , yes some people do not respond to certain types of chemo so their team will have to look at other treatments to make progress.

    How are things going with your husband?

    ((hugs)£

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge