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Energy level 19 months past chemo

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  • Energy level 19 months past chemo

    So my husband seemed to slowly but steadily gain his energy back over the year, but in the last few months he has been feeling really exhausted and worn down despite doing everything he can do take care of himself. He has given up alcohol, eats well, gets regular exercise, takes high quality supplements, goes to bed early, but nothing is helping. He is getting colds more often too so I dont know if that could have something to do with it as well? He has an appointment next week to check for anemia and testosterone levels. I am wondering if his experience is similar to anything you guys have gone through? Of course my PTSD brain is wanting to leap off the cliff into the worst case scenario of auto immune diseases, relapse or new cancer, debilitating mystery illnesses you hear about on TV.....I would really appreciate any help gaining some perspective here. Thank you
    2/7/18- Husband diagnosed
    2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
    3/12/18-4/1/18 Adjuvant BEPx1
    4/12/19- ONE YEAR ALL CLEAR

  • #2
    Hi Melanie,
    Sorry to hear your husband's feeling run-down, but I'm glad you've reached out!
    For me, the first year after chemo was very hard, I was so run-down that I could barely function at work or in social situations for about 9 months, and it would get gradually worse, then gradually better, then worse again, and I couldn't see the pattern. But, eventually, I figured things out with help from exercise, seeing a counselor, and getting a little pharmacologic help. Now, 2 1/2 years post-chemo, I would say I'm doing better than before the cancer even, I feel like I have a renewed sense of purpose and drive, and gotten my priorities straightened out.
    The reason(s) your husband feels run-down could be due to a LOT of things, and I certainly don't know the full range of possibilities. So, it's a good thing that you're getting stuff checked out.
    I suspect that a return of the cancer or some strange autoimmune thing is an unlikely explanation, but I'm not a doctor (well, not THAT kind of doctor :-) )

    PTSD may not actually be far off the mark - being diagnosed with cancer is a real psychological blow for many people, and it's quite possible that the blow from learning he had cancer has stayed with him and is contributing to feeling out of sorts and weird even two years later. It's pretty common for testicular cancer survivors to develop a touch of the blues, or to worry more than circumstances truly warrant, and it's nothing to be ashamed about seeking out a little help for. Sometimes (like for me) it hits hard pretty early on, but other guys it may build over a long time.
    Does he ruminate about the cancer (think about it all the time), or completely avoid thinking or talking about it even when it would make sense to do so? Is it hard for him to crack jokes about it? Those could be signs that a little psych help could get him over the hump.

    Again, it could be a lot of things, maybe even low testosterone or something like that, I'm curious to hear about other guys' experiences as well.

    And please stay in touch & let us know how things are going for you both!
    Painless lump 5/18/2017
    Orchidectomy June 2017 (4.5cm, rete testis involvement)
    Chemo Summer 2017 (2x7AUC carboplatin)
    No evidence of relapse since, but plenty of anxiety about it.

    I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

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    • #3
      Sounds like you are on the right track to figure out what's going on. It won't be surprising if his testosterone is on the low side, while most guys do fine with just one, some have problems. It's too soon to start worrying about more serious stuff.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

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      • #4
        Thank you both for your replies.

        Billandtuna, the way you described your up and down without understanding a pattern sounds very much like what he is experiencing. That up and down is what is driving him nits. He gets to thinking, 'OK, this is better now' only to drop back down.

        I am pretty sure whatever is going on is physical rather than mental. I think he is doing alright mentally. We do talk about things and he seems to be working through feelings He saw a counselor much of last year as well. Some days are hard but mostly he is at peace with it. But obviously it is still hard and I do believe we both have a little PTSD from the whole thing.

        It is crazy making wondering if there is something wrong or if this is just the part of the gift of chemo. I was thinking that him being more susceptible to getting sick, not sleeping great, and energy going up and down would be better this far out from chemo...but perhaps not?

        We'll keep digging and let you know what we find. I look forward to hearing more stories of other experiences!

        Thanks again
        2/7/18- Husband diagnosed
        2/12/18- I/O- Stage 1b 99% embryonal carcinoma 1%seminoma/yolk -CT's clear -All markers in normal range
        3/12/18-4/1/18 Adjuvant BEPx1
        4/12/19- ONE YEAR ALL CLEAR

        Comment


        • #5
          Please let us know how it goes, I'm glad to hear he has you as a strong and passionate advocate in his corner.

          Keeping up with the exercise is probably very helpful!
          Painless lump 5/18/2017
          Orchidectomy June 2017 (4.5cm, rete testis involvement)
          Chemo Summer 2017 (2x7AUC carboplatin)
          No evidence of relapse since, but plenty of anxiety about it.

          I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

          Comment

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