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Viewing 7 posts - 1 through 7 (of 7 total)
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  • #8454
    mr.claude
    Participant

    Hi all,

    Since last year, after 2 TURBS, initial BCG treatment, scopes that came out clean, I started having back pain shortly after maintenance BCG in May. Visit after visit to the chiro didn’t help, and I asked my Uro if it was possible that a nerve got pinched during BCG, to which he said would not happen.

    Fast forward 5 months of back pain, limping because of pain in my left leg, and a mass that the chiro & family doc couldn’t figure out what it was, only after an MRI once my leg swelled up, it was discovered to be a tumour and it started attacking the bone and was told it was osteosarcoma. Had an appointment with a specialist, who took a biopsy, then quickly went into surgery to get a pin inserted in my femur to strengthen it before it could break.

    While in the hospital, I needed to contact the Uro to put off my scope for early december since this new fight is top priority and the Uro agreed, but he got the pathology report, and it turns out that, I now have what he said was extremely rare, Metastatic Bladder Cancer in the leg.

    I’m just wondering if there’s someone else out there that has had this or know of more info. I’ll be starting radiation treatment out of town shortly, and then possibly some chemo. Like the specialist I spoke with this week who will be administering the radiation said, it’s rare that someone my age (44) gets bladder cancer, but to have it metastasize. Any info anyone may have would be greatly appreciated.

    Thanks

    Claude

    #21208
    rock2013
    Participant

    very rare indeed, make sure you ask lot of questions. I had my bladder removed, normally it would go to the wall of the bladder and the prostate etc….best of luck.

    #21234
    Farm-Boy
    Participant

    Good luck Claude. I don’t know much about what is happening to you, but hope they can take care of things for you !

    R

    #21238
    Greg C
    Participant

    Hi Claude

    I don’t have any knowledge on your condition but will keep you in my thoughts and prayers. I admire your determination and I believe that is a major plus on recovery. Treatment for cancer has come a long way and progressing as we speak. A lady we know has a 24 yr old son whose lungs were full of cancer. Everyone including his Doctor thought it to be a death sentence. He did the chemo even when all thought it to be too late and believe it or not is now clean and cancer free. The specialist said it was a miracle. This young man is now enjoying the life that everyone thought was finished. Miracles can and do happen, we just need to keep the faith. Please don’t assume I think you need a miracle. As mentioned before treatments have come a long way and along with faith we can be restored back to our precancerous selves. Enjoy every day Brother! It will get better.

    Best Regards
    Greg C
    PS: feel free to message me anytime to talk about anything at all

    #21241
    Ieva
    Participant

    Ask about immunotherapy infusions (clinical trials) for metastatic bladder cancer….I believe Bristol Meyers Squibb has a clinical trial that I have read about.

    Ieva

    #21242
    Jack Moon
    Keymaster

    Ieva is correct about the trial and also immune trial by Roche at Sunnybrook. The immune trials have had success after failure of chemo. Roche’s immune treatment has been approved by FDA in USA but not Health Canada as of yet.
    If you have a problem locating the trial information, I can assit.
    Best of luck
    Jack

    #21358
    mr.claude
    Participant

    Hi All,

    I should have checked in before today, but haven’t been on the computer for quite some time. Jack & leva….I’d love more info if you have it, and I guess I could also speak to my Uro.

    I’ve already have 15 radiation treatments which knocked me on my butt with being tired all the the time (1 of the reasons I’ve been away from the computer), and am starting chemo in 2 weeks….If I can get a hold on that for the clinical trial, I think I would. Chemo scares the heck out of me.

    I’m trying to keep positive and not think too much about it.

    Thanks again

    Claude

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