in need of information

toodywoo
toodywoo Member Posts: 2
in Ovarian Cancer #1
Hello fellow members;

I am a 33 year old survivor of ovarian germ cell cancer, I was first diagnosed at the young age of 21, and have now been told im cured. However I am also now being told that due to the chemo regimend i was on ( bliomycin) that I now have bliomycin enduced lung injury. well the Dr's speak in tongues so Im not comprehending what they are saying, and i have tryed to research it on the net, and am still not understanding does any one have any knowledge about this diease. please let me know andy information is helpfull.


Thanks.

Comments

  • Cindy Bear
    Cindy Bear Member Posts: 569
    #2
    Hi Toody
    Hi Toody. Sorry you've been thru so much and at such a young age.. Is this Bleomycin? I'm not sure, but think it's mostly used for Lymphoma now. I have never heard of it used for ovarian. It's the B in the ABVD lymphoma treatment arsenal. If you go to the lymphoma discussion board and search for bleomycin or post there, they can probably shed a ton of info on that for you. When you were on it, did they xray your lungs regularly? They are suppposed to because lung tissue damage is a possible but lesser side effect If you google bleotoxicity on the web I think you'll also find a wealth of info and I think the standard treatment is to put you on steroids... like prednisone .. possibly long term.
    Good luck!
  • toodywoo
    toodywoo Member Posts: 2
    #3
    Cindy Bear said:

    Hi Toody
    Hi Toody. Sorry you've been thru so much and at such a young age.. Is this Bleomycin? I'm not sure, but think it's mostly used for Lymphoma now. I have never heard of it used for ovarian. It's the B in the ABVD lymphoma treatment arsenal. If you go to the lymphoma discussion board and search for bleomycin or post there, they can probably shed a ton of info on that for you. When you were on it, did they xray your lungs regularly? They are suppposed to because lung tissue damage is a possible but lesser side effect If you google bleotoxicity on the web I think you'll also find a wealth of info and I think the standard treatment is to put you on steroids... like prednisone .. possibly long term.
    Good luck!

    info
    Cindy Bear thank you for the information, I will try that. but the type of ovarian cancer i had was germ cell which is more common in testicular cancer. the way i understood it was instead of the cancer cells growing on the out side of the ovary it grows from within which is less common than the regular type of ovarian cancer. as for doing xray they never did a single xray durring my course of treatment, so now it has me wondering why? especially if they knew what the side effects were. Any how I appreciate the information. take care.
  • TJH
    TJH Member Posts: 1
    #4
    bliomycin
    Hello Toody,
    I also got treated with Bliomycin, but for testicular cancer. I've been given the all clear though am in the same boat with not knowing or getting clear answers as to the long term affects of using the drug. I was given lung capacity tests during my treatment and also had regular chest x-rays, always told things were ok. Also, during my treatment nurses were under instruction to not administer any oxygen as it would affect my lungs, no-one will commit if this is necessary for the rest of my life. I hope not, as I'm going scuba diving later in the week.

    I'm very happy to hear you've been given the all clear. I'd like to pass on what every dr has told me about germ cell cancer though, both in Australia and the UK. There is a 10 year check-up plan to ensure the cancer has not re-surfaced, but I've been warned it has re-surfaced after that time-frame and you should always request check-ups past that time limit.

    All the best, TJ

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