Davef6

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  • #148619

    davef6
    Participant

    Thanks Linsey, that’s really useful. My amy is also of the cardiac variety and a lot of what you put already sounds familiar – steady easy exercise is fine, but any sort of slope, whether walking or cycling, quickly becomes too much – I also have an e-bike for the same reason! I do count myself fortunate that that my kids were in their 20s before my diagnosis, for many reasons. The last point you made about looking and feeling faairly normal most of the time also rings true. I get asked a lot about why I’m not running, usually from peope expecting to hear about some sort of injury and an imminent return – I haven’t really found teh ideal response to that.
    It’s good to hear that your remission lasted so long and thanks for the info on side effects. My chemo will be on Wednesdays so I’m hoping that any effects will have gone by the weekend but I’m expecting to be tired – I haven’t slept well since a while before the diagnosis.

    #148615

    davef6
    Participant

    Hi Linsey, they told me I was a relatively early diagnosis at 56 but 44 is very unlucky. I was fortunate in not having a stroke or anything like that, that must have been awful for you.
    I’d be interested in hearing a bit more about your treatment history – how long remissions lasted, that sort of thing. I’m about to start my first cycle of treatment at UCLH so I’ve got lots of detail on what happens through that but when you ask about after that there are lots of ifs and maybes – everyone is different I know but some personal experiences would be useful.

    Thanks!

    #148571

    davef6
    Participant

    Hello,

    Another new diagnosis here and another (former) keen runner. In fact I think I only got the diagnosis becaue of that – over 6 months or so I went from being able to run 20 miles at a good pace to having to walk after jogging a mile very slowly. In October my cardiologist (who I see every year over an unrelated issue) noticed on an echocardigram that my heart muscles were getting stiffer than they should be, he got some blood tests done that showed the lambda proteins and then it was a round of biopsies, scans and 3 days at the NAC in December. So I have smouldering myeloma and AL Amy, although they’re not entirely 100% sure it’s AL, so I had a cardiac biopsy last week to confirm whether it’s that, ATTR or maybe both. Once they know that then proper treatment can start, which would be good.

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