Not sure what to say

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Maryn0122
Maryn0122 Member Posts: 3
edited March 2014 in Ovarian Cancer #1
Hi. I was diagnosed back in October 2007 with stage 4 ovarian cancer, metastasized to my liver. At the time of diagnosis, my CA125 was near 23,000 (that's not a typo). I was given six months to live. It's been almost 2 years, and I'm still here. Unfortunately, my cancer seems to be the kind that's very good at getting resistant to chemo. In addition to a surgery, I've been through four different drug combinations. They work for a while, and then the CA125 starts to go up again and it's time for new drugs. I've done taxol/carboplatin, gemzar/cisplatin, doxil/cytoxin, and abraxane/topotecan. They've also been doing Avastin for a while now (I'm going to have to stop that one, though - it's starting to mess up my kidneys).

Now the doctors are saying that because of the drug resistance, that I will never be cured. They hope to keep me going as long as they can with various chemos, as long as we can maintain some quality of life. They've thrown around time frames like six months and a year... but also say they're not ready to give up.

I don't know what to think. Part of me is like, yeah, you told me I was going to die in six months and I'm still here. Part of me is almost relieved at the idea of being told at some point that I have to give up the fight. Part of me is mad and sad and can't believe this is happening. I just can't seem to find the right balance of faith, hope and acceptance.

I don't have a specific question, really. I just wanted to know how others are coping with the same feelings.

Thanks.

Comments

  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #2
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    Coping
    Hi Mary, that is great to only have 4 chemos as I am on regimen #12, and 2 years is good. Don't give up on treatment until you are ready as it has been 6 1/2 years and 2 surgeries for me as well the 12. I am still here and have repeated the carbo and gemzar with Sorafinib, so you just never know.

    For coping what I do is live each day to the fullest as much as possible. Hugs ♥ Prayers Bonnie
  • aboli
    aboli Member Posts: 9
    #3
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    fighters
    bonnie and mary, you both are fighters.

    My prayers for you both.

    yesterday I read something that I would like to share:

    "Buy your self as much time as possible, because every single day there are new treatments,
    new drugs, and new therapies. So if you can give yourself a year, or two (or anytime at all) there will be some new drug, some new therapy, something to get you through the next phase."
    - Kulhawaik, a 3 times cancer survivor and an activist( for the cancertreatment and research?) and reporter from Boston

    You may have read this probably. It is a part of an article. But I just thought I will share any way.
    For me everything is new yet.

    huggs and prayers
    from Aboli
  • aboli
    aboli Member Posts: 9
    #4
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    fighters
    bonnie and mary, you both are fighters.

    My prayers for you both.

    yesterday I read something that I would like to share:

    "Buy your self as much time as possible, because every single day there are new treatments,
    new drugs, and new therapies. So if you can give yourself a year, or two (or anytime at all) there will be some new drug, some new therapy, something to get you through the next phase."
    - Kulhawaik, a 3 times cancer survivor and an activist( for the cancertreatment and research?) and reporter from Boston

    You may have read this probably. It is a part of a story on ASC website. But I just thought I will share any way.
    For me everything is new yet.

    huggs and prayers
    from Aboli
  • saundra
    saundra Member Posts: 1,370 Member
    #5
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    Coping
    I cope by knowing that only God knows the number of my days. Once I totally accepted that and that God is the loving Father, then it doesn't bother me. I am Stage IV with mets to the liver also. Currently, on Doxil and carbo after a 10 month vacation from chemo. Saundra
  • Cindy54
    Cindy54 Member Posts: 452
    #6
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    saundra said:

    Coping
    I cope by knowing that only God knows the number of my days. Once I totally accepted that and that God is the loving Father, then it doesn't bother me. I am Stage IV with mets to the liver also. Currently, on Doxil and carbo after a 10 month vacation from chemo. Saundra

    For Mary
    Never give up. Never. As long as you are breathing you always, always have a chance. Every day brings some new type of treatment or some hope. Yes, it is hard. Yes it is tiring. But no one know just how long we are to be on this earth. You have made it very far. And there are so many ladies on this board who have lived and struggled with this beast for many, many years. And I emphasize LIVE. Not every day was good for them. But they have raised families. And they have crammed as much life into their days as they could. Keep one eye open to any new type of treatment. Keep the other looking up. God Bless you. Hugs, Cindy
  • special123
    special123 Member Posts: 22
    #7
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    faith
    My faith has went through a metamorphosis through my diagnosis. God is a loving heavenly father who only wants good for us. He loves you more than you can imagine. Just dwell on that, how great his love is for you. There are not words to express it. And like we have all seen on the cancer commercial on T.v. "You have no expiration date." Only God knows the number of days assigned to you, for he has you known since you were formed in your mother's womb.

    Love,
    special123
  • arbor3
    arbor3 Member Posts: 103
    #8
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    NOT SURE
    Hi

    Only God knows for sure how long we have or anyone for that matter. When I had surgery 2 1/2 years go I asked my gyn/onc how long I had to live. He looked at me and said, you want the answer that the books say. He said no one knows how long, it depends alot on how your body reacts to the chemo. Well I have had 4 rounds of chemo and I am doing good. The little tumors grow and the chemo knocks them down. My body is fighting this cancer thing for me.
    For me I live each day to the fullest and enjoy life. I have been lucky the chemo has worked well for me.
    Hang in there and be positive, it will work out.

    HUGS!!!!!!!!!!!!!!!Dinora
  • kayandok
    kayandok Member Posts: 1,202 Member
    #9
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    coping
    Hi Mary, first congratulations on your survival!! I love to hear positive beating the odds stories. I am a 2 year survivor too. Although I have a strong faith in God and that He knows best and has determined my life etc, my feelings have gone through the gamut. And really that is just what they are, feelings. The truth is that I know I will be ok. BUT it doesn't make processing all the feelings any easier. I could write a book about this, actually, but I won't bore you with any more details :)

    I can relate to what you are saying and agree that at times there is no balance. I kind of bungie jump between those three sometimes, and try to land on acceptance as much as possible.....

    Warm hugs,
    kathleen:)

    PS E-mail me if you want to chat about this more....
  • lindachris
    lindachris Member Posts: 173
    #10
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    All inspiring
    Just a note to say that all your perspectives here show fortitude and are a great testament to the best of the human spirit, with an emphasis on the spirit(ual!) Recently my wife Linda had her counts rise ever so slightly and it set off alarm bells initially. But she also told me this time around, "We'll do what we have to do, if we have to do it." (She's at 25, still "normal" but up from 6 or 7...possibly the rise is result of a hernia?)

    Which is in line with NEVER GIVE UP because there are new treatments coming along. Personally I hope they develop the ability to send in the nanobots or whatever they're developing and knock that cancer on its ****. Bammo! I know it is a difficult disease. We went through two full rounds of treatment: #1 was Carboplatin/Taxol with for 8 treatments plus 3 intraperitoneal, which I think they've back off doing (again.) We went a year and it snuck back with ascites to boot. That meant Gemzar/Cisplatin and it fell away quickly. But we went as far with treatments as we could. Finally when it was backed off, so were we. Had enough. And we're a year and a half into NED.

    I write all this because I share with Linda what you write on this board and in some way I want to contribute. And it's in knowing that the road is difficult that makes it possible to appreciate the steps you've taken, and are about to take. God Bless you all.

    Chris
  • saundra
    saundra Member Posts: 1,370 Member
    #11
    Options
    lindachris said:

    All inspiring
    Just a note to say that all your perspectives here show fortitude and are a great testament to the best of the human spirit, with an emphasis on the spirit(ual!) Recently my wife Linda had her counts rise ever so slightly and it set off alarm bells initially. But she also told me this time around, "We'll do what we have to do, if we have to do it." (She's at 25, still "normal" but up from 6 or 7...possibly the rise is result of a hernia?)

    Which is in line with NEVER GIVE UP because there are new treatments coming along. Personally I hope they develop the ability to send in the nanobots or whatever they're developing and knock that cancer on its ****. Bammo! I know it is a difficult disease. We went through two full rounds of treatment: #1 was Carboplatin/Taxol with for 8 treatments plus 3 intraperitoneal, which I think they've back off doing (again.) We went a year and it snuck back with ascites to boot. That meant Gemzar/Cisplatin and it fell away quickly. But we went as far with treatments as we could. Finally when it was backed off, so were we. Had enough. And we're a year and a half into NED.

    I write all this because I share with Linda what you write on this board and in some way I want to contribute. And it's in knowing that the road is difficult that makes it possible to appreciate the steps you've taken, and are about to take. God Bless you all.

    Chris

    Believe it or not!
    We look forward to your updates on Linda, Chris. I, for one, like to hear how everyone is doing and what treatments they are having. I think of it as a special "sisterhood" and you all keep me going. Saundra

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