KathWilson

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Viewing 15 posts - 46 through 60 (of 87 total)
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  • #89944

    KWilson
    Participant

    Weird this query 'coz I thought I'd replied to it (but must be something similar) about genetic links.

    Firstly, I don't know the answer but I was told that it wasn't linked.

    Secondly, I was, last year asked to take part in a large study which is now being carried out asking about my and my family's medical history and a sample was taken (I had to spit in a jar after washing my mouth out – ugh).

    It will, obviously, be aaaaaaaaaaaaaaaaaages before the results are know but they are clearly investigating the possibility.

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    #103763

    KWilson
    Participant

    Thanks Jo,

    I'm still hangin' on in here, altho' I do admit on my really bad days I do feel a bit worn out with it all but then, who doesn't at some point?

    I'm hoping to keep plodding on for a while yet!

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    #89845

    KWilson
    Participant

    Yeah, it's a bit 'clumpy' I think is the best description the old one seemed a bit more user friendly.

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    #89855

    KWilson
    Participant

    Sounds like a rough journey!

    Glad you're back.

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    #103760

    KWilson
    Participant

    Bin there, done that – I know JUST what you mean about the tenderness – if defies description – you do really feel as if someone's given you a good old kicking and every part of soft tissue is tender (as you say, even the hair roots).

    Below is a copy of my reply in another section here which I've just typed.

    [i]"I'm on Revlimid and Dex and have been for some time. However, things aren't on hold as well just now.

    My problem is mainly the steroids. When I take them, they wipe me out completely and I have 7-10 days where I'm totally useless (ok, some would say that's a normal condition for me!) I feel faint, lethargic, 'down' am vomiting and just can't get off the sofa.

    Now, in the hope of extending my days, the Dex has been put back to two pulses in the cycle but to be honest, this means I only have about 6 functioning days and I think I'm going to have to consider whether it's worth it – extra days but being too weak to do anything or spend time with family and friends don't seem valuable. It's that balancing act again."[/i]

    Taste, what taste? Nothing tastes as it should and it's hard explaining that to people who bring you lovely baking and stuff to make you feel better. I do feel ungrateful when I tell them I can't taste it so can't say whether I liked it or not but it's just a fact.

    Thing is, when I'm on the extra Dex the PP does go down a bit, which, otherwise it doesn't but there you go!

    I hope some of your symptoms settle soon as your body gets used to the Dex.

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    #89762

    KWilson
    Participant

    I;ve experienced the salty taste too (I'm on Rev/Dex). It seems to have gone away (for now) – I don't know why it came or why it went!

    My taste buds are totally off altogether and most of my food is tasteless or doesn't taste as it should.

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    #97127

    KWilson
    Participant

    I'm on Revlimid and Dex and have been for some time. However, things aren't on hold as well just now.

    My problem is mainly the steroids. When I take them, they wipe me out completely and I have 7-10 days where I'm totally useless (ok, some would say that's a normal condition for me!) I feel faint, lethargic, 'down' am vomiting and just can't get off the sofa.

    Now, in the hope of extending my days, the Dex has been put back to two pulses in the cycle but to be honest, this means I only have about 6 functioning days and I think I'm going to have to consider whether it's worth it – extra days but being too weak to do anything or spend time with family and friends don't seem valuable. It's that balancing act again.

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    #89814

    KWilson
    Participant

    I think it's going to be a total shambles and dread to think of the zillions of pounds which will be wasted in paying out shares and things and not treating patients. I'm dreading it.

    #84051

    KWilson
    Participant

    Welcome. You'll find this a wonderful resource of up to date, accurate and helpful information and also a very supportive discussion group.

    Good luck with your treatment.

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    #84106

    KWilson
    Participant

    My heart goes out to you on reading this! It makes me SO angry when I hear of consultants like this – it's SO unnecessary. If you aren't in a position to change hospitals then have you thought of trying your Patient Liaison Services – I believe all hospitals have one, they may be able to help you address this problem.

    Meantime, good luck with your treatment.

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    #84125

    KWilson
    Participant

    Welcome. I trust you will soon be 'in the swing' and getting your treatmnet started ok. It's good that you got a diagnosis when you did.

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    #84151

    KWilson
    Participant

    Welcome. It's a tough journey but finding this place will help you through. I hope your Dad continues to improve.

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    #84164

    KWilson
    Participant

    Welcome, you'll find lots of help and support on here both for yourself and your brother.

    It's a complex disease but you do, surprisingly, get used to the terminology and treatment but intially it's a dreadful shock and you feel as if you'll never get to grips with it.

    Don't be afraid to post with good/bad/funny/sad news or posts, there's always someone here who will reply and try to help where possible.

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    #89289

    KWilson
    Participant

    Not been on for a while so have only just read this just hoping that, by now, you're getting sorted.

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    #89232

    KWilson
    Participant

    Great news. I think the tiredness just comes with the territory but you learn to pace yourself.

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Viewing 15 posts - 46 through 60 (of 87 total)