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FormerMember
FormerMember
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Hi Everyone,

I have been reading a few post on stem cell transplant,people say take one day at a time but I have to say I am not doing that because I am not near this stage yet, I had plasma cytomoma on the back of my tongue and behind my nose, I had RT back in Febuary which took away my taste and now I am having Cheamo that seems to be working I am being treated for Myeloma now because my consultant says he wants to treat it as myeloma before it gets to that stage, I still have no taste and very little appertite, is this normal to lose taste for so long or is it just because I am still having Cheamo, I am worried that my taste has gone for good, I have lost three stone from the start of treatment,I was eating and living life before treatment, we take so much for granted I didn't realise just how much we take taste for granted,they say loss of taste can be down to lack of smell,my smell is fine but no taste.

My consultant says the next stem down the line will be stem cell transplant and am thinging it is blood cells not bone marrow or am I barking up the wrong tree,this of course I will ask my consultant when the time comes,all I know now is that my bones are fine. 

Is bone marrow stem cell transplant the same as stem cell transplant or is one just the blood

  • Hi Keavan1,

    I am really sorry to read about your problems with taste, it’s something I have had no experience of and I can imagine that it must be distressing.  What has your consultant said about it? If you haven’t already, I would definitely talk to them about it and get them to give you a good idea about why it’s happened and how it might be fixed. I understand what weight loss is like, I lost a lot of weight after complications after my stem cell transplant and it was a really hard time. I used the concept of “mindless eating” and after several months, my weight started to improve. It’s the concept of eating without thinking, a mechanical exercise you do whilst you’re not thinking. It’s to try and get your brain not to focus on what you’re doing. No idea if it might help you at the moment?

    Re: terminology, I’m not a medical expert, but I think when people refer to bone marrow transplants, in the vast majority of cases, they are referring to a stem cell transplants. The stem cells originate from the bone marrow, so there is a connection, but I understand the procedure is quite different now to what it was 20-30 years ago.

    Wishing you all the best

    Greg

  • FormerMember
    FormerMember in reply to greg777

    Good afternoon Greg,

    Thank-you for taking the time to read my post and reply, all I keep getting told is eat little and often sounds easy but it is not when I can't face the thought of eating but I am trying, it has got to the stage that I can't do very much without being worn out, even drinking my build up drinks is a struggle,your way of eating without thinking about it sounds good but I can't get past the feeling sick at the thought of eating I am taking anti sickness,so far today I have had a piece of toast and a biscuit.

    My concern with the stem cell is that my bones are strong and I don't want to fix something that doesn't need fixing although the thought of a clean start sounds good, I am really struggling with Cheamo so I am scared that stem cell will finish me off I am 63 but starting to feel like 70 or 83 I can only Imagine of course.

    Guess I have no choice but to take each day as I come to it but I am getting very scared that I will die if my heart is not getting the things it needs to keep going.

    ARH