News on treatment from USA

This topic contains 8 replies, has 8 voices, and was last updated by  tom 13 years, 5 months ago.

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #97523

    Jet
    Participant

    A video from a myeloma specialist being interviewed at a cancer conference: http://www.patientpower.info/video/myeloma-update-from-asco/

    #97524

    BADGER
    Participant

    Thanks for that Jet
    our you ok and ready for your SCT been looking at your blog Good luck
    lOVE jO X

    #97525

    ann
    Participant

    What an uplifting video Jet. Cheered us both up and gave us hope. Thanks for finding it from us! Shows that there is room for optimism for the future. Ann

    #97526

    brocho
    Participant

    Hi Jet thankyou its good to see whats happening out there ! love Bridget x

    #97527

    DaiCro
    Participant

    Hi Jet,

    Thanks for the video link, it was very enlightening. The idea of one-stop, one-fits-all has been a bugbear of mine for a long time now. I asked the Prof at the Nottingham INFODay the question about an individual disease being treated with blanket, 1-2-3 treatments and the seeming lack of flexibility and he agreed.. but said that there are ways and means… but only for the bigger, clinical test centres it seems, which is plain wrong.

    The idea of over-treating, with the subsequent lengthy delays for recovery from frankly quite brutal doses also interested me. They have based my current dosage on height and weight but have not taken into consideration that my HGB has never been more than 12.4 in my entire life… (Mens range 12-14 Womens 10-12) and that was when I worked down the pit and played county hockey, never fitter. My HGB is the same as a female… My blood cells are woman sized, with a knock on effect on energy levels, body functions, alcohol consumption etc., And I thought/think that that would have a significant effect re:side-effects and my body's functions during treatment… my body agrees.:-)

    Thanks again, hope you are doing better than expected.8-)

    Dai.

    #97528

    Min
    Participant

    Good Find Jet, very very interesting. Thanks for that. How are you doing these days…Must be getting near to transplant time? Hope its all going in the right direction for you
    Min

    #97529

    jmsmyth
    Participant

    Thanks for that Jet Frank's consulat is going to love you – I now have loads more questions to ask her!!

    Hope you are dong geat
    Love Jean x

    #97530

    Jet
    Participant

    Yes… I have also sent an email, with the video clip attached, to my consultant asking her to explain the pros and cons of SCT and why she thinks it's beneficial, as Dr Berenson clearly thinks otherwise, with a request to respond before Weds, when they are meant to be inserting the Hickman line and Thu/Fri having the pre-stem cell collection blast of chemo.

    Nothing like a last minute decision, eh? I wonder how she'll respond. If it's interesting I'll post it here.

    Up to this point, I've gone along with everything they've suggested/offered/prescribed, so it's quite strange to be questioning things and putting myself in a position of having to make a choice about something. I think I almost prefer it to just be told what to do… easier, innit? 😀

    The last few weeks have been great though. Off the drugs, feeling good and energetic and enjoying my food once more. I've even stopped taking the supplements as popping pills just reminds me that I'm an ill person, so I decided to have a few weeks off and frequently forget for hours at a time.

    #97531

    tom
    Participant

    Hi Jet

    Thanks for the Link, it looks good for us all 😀

    Am with you re the being told bit, I have been Married to my young bride Elaine for near on 36 years so am used to being told Lol

    Love and Hugs

    Tom "Onwards and Upwards" xxx

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