WOW...am i bummed out

karen1951
karen1951 Member Posts: 103
i went to one of the top rated gyn/onc in pittsburgh today to get a second opinion. i was diagnosed stage IV in aug of 2010...did 6 rounds of carbo/taxol....ned for at least 6 months...ca125 started climbing so did tamoxifen for 2 months...disease progression and high ca125 so did 2 rounds of topotecan...still progression so am now doing gemzar....finished one round so far. this doctor told me that if the gemzar doesn't work that i have a big decision to make...he suggests palliative care. he said there's 9 drugs in the pipeline right now...they try to give you first the ones that have the mildest side effects so as to preserve good quality of life. he said you can go thru all the drugs, but the only one who will see any results is the radiologist because the tumors will maybe shrink a little. but, bottom line, the cancer is not going to be cured. wow...i kinda knew this but it's a hard pill to swallow when someone spells it out in black and white like this. i still feel pretty good...have a lot of fluid accumulating in my lung and abdomen....i've gotta have the abdomen drained soon...just had the lung drained....sigh....this was just a lot to absorb. god bless all of us warriors...karen
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Comments

  • Robkel7
    Robkel7 Member Posts: 68
    Keep the faith....
    I will be praying for you Karen....may God lean down and touch you with His mighty hand.

    Robin
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    Aw Karen I am so sorry to
    Aw Karen I am so sorry to read your news. Can you try Carbo/taxol again? I know that is a big hitter.Well just carry on with the Gemazar and you just never know - it may be the drug that works. It is all about finding a way to live with this, to have a good quality of life for as long as possible.

    But don't forget you have 9 more drugs to try. 9!! That is alot of choices and options to go at.

    I think about you often, sending you lots of love Tina xxx
  • kikz
    kikz Member Posts: 1,345 Member

    Aw Karen I am so sorry to
    Aw Karen I am so sorry to read your news. Can you try Carbo/taxol again? I know that is a big hitter.Well just carry on with the Gemazar and you just never know - it may be the drug that works. It is all about finding a way to live with this, to have a good quality of life for as long as possible.

    But don't forget you have 9 more drugs to try. 9!! That is alot of choices and options to go at.

    I think about you often, sending you lots of love Tina xxx

    The corny old saying
    "it ain't over 'til it's over" is so true. I know you have the will to fight and that's all any of us can be expected to do. I am sending prayers and good thoughts to you and your family.

    another Karen
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    Sorry
    A very small number of us will 'be cured'. A lot of women have had good results from gemzar and if that is not the one for you the next one might be.
    Did he mean you have 9 more drugs to try? Also different combos may work where alone they don't. Do not let them take away your hope I think that is our best tool in this fight. I've read that anything after frontline chemo is considered pallitive so what that is just a label I plan on fighting as long and as hard as I can. Hang in there sister!
    Colleen
  • karen1951
    karen1951 Member Posts: 103

    Sorry
    A very small number of us will 'be cured'. A lot of women have had good results from gemzar and if that is not the one for you the next one might be.
    Did he mean you have 9 more drugs to try? Also different combos may work where alone they don't. Do not let them take away your hope I think that is our best tool in this fight. I've read that anything after frontline chemo is considered pallitive so what that is just a label I plan on fighting as long and as hard as I can. Hang in there sister!
    Colleen

    tina and colleen and karen
    tina and colleen and karen and all you other wonderful girls....this has been a long day and it's been a bitter pill to swallow...i'm still processing all that he told me. i've decided that i'm going to fight this demon with everything i've got....only God knows how long any of us will live. i'm far from giving up...if anything, what he told me today only makes me more determined to prove him wrong...i've got too much to live for. he basically told me to "call it a day" if the gemzar doesn't work, but that goes against the grain of everything i've been doing up to this point. the battle continues.....thank you all for your prayers and support...it's a source of strength every day.....karen
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    karen1951 said:

    tina and colleen and karen
    tina and colleen and karen and all you other wonderful girls....this has been a long day and it's been a bitter pill to swallow...i'm still processing all that he told me. i've decided that i'm going to fight this demon with everything i've got....only God knows how long any of us will live. i'm far from giving up...if anything, what he told me today only makes me more determined to prove him wrong...i've got too much to live for. he basically told me to "call it a day" if the gemzar doesn't work, but that goes against the grain of everything i've been doing up to this point. the battle continues.....thank you all for your prayers and support...it's a source of strength every day.....karen

    Hang in there, Karen!
    Nobody, including doctors, know how long we have on this earth. Keep the faith and know that we are all pulling for you!

    Kelly
  • paris11
    paris11 Member Posts: 159
    karen1951 said:

    tina and colleen and karen
    tina and colleen and karen and all you other wonderful girls....this has been a long day and it's been a bitter pill to swallow...i'm still processing all that he told me. i've decided that i'm going to fight this demon with everything i've got....only God knows how long any of us will live. i'm far from giving up...if anything, what he told me today only makes me more determined to prove him wrong...i've got too much to live for. he basically told me to "call it a day" if the gemzar doesn't work, but that goes against the grain of everything i've been doing up to this point. the battle continues.....thank you all for your prayers and support...it's a source of strength every day.....karen

    I've got too much to live for.
    Hi Karen,

    You sure do have too much to live for. I love your beautiful spirit and your GUTS.

    Sending love and wishes for happiness.

    Connie
  • mopar
    mopar Member Posts: 1,972 Member
    HUGS AND PRAYERS, KAREN
    Not the words you wanted to hear, but as everyone has said, it doesn't mean it's 'hopeless'. There's ALWAYS hope, and other alternatives. I admire your determined spirit and outlook. We're right here with you, forging ahead. Keep us posted.

    Sending lot of hugs and prayers!
    Monika
  • Mwee
    Mwee Member Posts: 1,338
    Dear Karen
    I'm so very sorry that you had to hear "that" discussion. For many of us there will be no cure, but there is still hope and quality of life. I've been chemoing for the past two years since my recurance The chemo has kept me stable and feeling very well, when I'm not in those chemo days. We're right here for you......... (((HUGS))) Maria
  • clamryn
    clamryn Member Posts: 508
    Top/rated idiot
    Hi Karen, I believe you went to a top rated idiot. He is not God and he doesn't have any idea how long you have on this earth. I am so sorry that he put it that way. I am sure glad he is not my doctor. My doctor keeps telling me there are lots of things we can try.

    Just have a good cry and then go get your big girl panties and put them on. I would love for you to go back to this doctor next year and say, "Hi doc, remember me....I am still here."

    God bless you Karen.
    Linda
  • mom2greatkids
    mom2greatkids Member Posts: 528
    Sorry for your news Karen.
    Sorry for your news Karen. I am glad I have an optimistic doctor. He told me a few months ago "the glass is always half full." You'll be in my prayers. You're a fighter!! Carla
  • JoWin615
    JoWin615 Member Posts: 150 Member
    Keep up the fight
    I am so glad we have this discussion board so that we can "let it all out". I'm so sorry you had to hear those scary words, and I hope you're feeling a bit more positive now. You are in my thoughts.

    Jo
  • JoWin615
    JoWin615 Member Posts: 150 Member
    Keep up the fight
    I am so glad we have this discussion board so that we can "let it all out". I'm so sorry you had to hear those scary words, and I hope you're feeling a bit more positive now. You are in my thoughts.

    Jo
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    clamryn said:

    Top/rated idiot
    Hi Karen, I believe you went to a top rated idiot. He is not God and he doesn't have any idea how long you have on this earth. I am so sorry that he put it that way. I am sure glad he is not my doctor. My doctor keeps telling me there are lots of things we can try.

    Just have a good cry and then go get your big girl panties and put them on. I would love for you to go back to this doctor next year and say, "Hi doc, remember me....I am still here."

    God bless you Karen.
    Linda

    I totally second what Linda
    I totally second what Linda said...Top Rated Idiot! We know the stats...but we are there to fight. Prayers...hugs... And chanting Go Fight Win!!!
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    praying for you daily
    Karen,

    I am so sorry to hear what we all fear we will hear while battling the beast, my prayers are with you every day. I am recieving palliative care but not for the same reason my doctor thought they could get me to the right pain doctor that could help me and they did. They offer so much more that we know and really give you a lot of support, I see a nurse once every week and next week I am going to talk to them about there massage theripy (I know I did not spell that right lol chemo brian) coming over about once a week. I would chek and see what they are offering and don't look at it like it is hospic just another support given to you. Don't give up on other treatments either if this doctor is giving up find another one I was on Taxol/Carbo and went into remission by my third treatment. I also am stage four and was in pretty bad shape when I found out I had cancer. They could not wait until chemo was done to do the surgery and then after surgery they were unable to wait until I heald from the surgery because if they did I would die. I did not give up hope and will hang on til the last possible chance please do the same.

    Anne
  • karen1951
    karen1951 Member Posts: 103

    praying for you daily
    Karen,

    I am so sorry to hear what we all fear we will hear while battling the beast, my prayers are with you every day. I am recieving palliative care but not for the same reason my doctor thought they could get me to the right pain doctor that could help me and they did. They offer so much more that we know and really give you a lot of support, I see a nurse once every week and next week I am going to talk to them about there massage theripy (I know I did not spell that right lol chemo brian) coming over about once a week. I would chek and see what they are offering and don't look at it like it is hospic just another support given to you. Don't give up on other treatments either if this doctor is giving up find another one I was on Taxol/Carbo and went into remission by my third treatment. I also am stage four and was in pretty bad shape when I found out I had cancer. They could not wait until chemo was done to do the surgery and then after surgery they were unable to wait until I heald from the surgery because if they did I would die. I did not give up hope and will hang on til the last possible chance please do the same.

    Anne

    i can't thank all of you
    i can't thank all of you girls enough for all the encouragement and support you are showing me. it was such a shock to hear that doctor say to give up....i am not a quitter...i appreciate his candor but he doesn't know me very well.....hopefully the gemzar will kick in ...i will keep you all posted....thank you all so very much....karen
  • paris11
    paris11 Member Posts: 159
    i went to one of the top rated gyn/onc in pittsburgh today
    Hi Karen,

    I am guessing that you may still be reeling. I think that your second opinion onc. is a very intelligent and dedicated physician. He may have a different philosophy but personally I respect him for his honest voice. I respect you for seeking a second opinion.

    You are the final decision.

    Good luck.

    Connie
  • LoveButterflies
    LoveButterflies Member Posts: 74
    karen1951 said:

    i can't thank all of you
    i can't thank all of you girls enough for all the encouragement and support you are showing me. it was such a shock to hear that doctor say to give up....i am not a quitter...i appreciate his candor but he doesn't know me very well.....hopefully the gemzar will kick in ...i will keep you all posted....thank you all so very much....karen

    All things are possible...
    Karen,

    Remember that all things are possible with God. Have faith in Him that he will give you the strength, courage and peace to continue your fight. I pray the gemzar works and gives you remission and more time.

    God Bless!

    Carmen
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    paris11 said:

    i went to one of the top rated gyn/onc in pittsburgh today
    Hi Karen,

    I am guessing that you may still be reeling. I think that your second opinion onc. is a very intelligent and dedicated physician. He may have a different philosophy but personally I respect him for his honest voice. I respect you for seeking a second opinion.

    You are the final decision.

    Good luck.

    Connie

    It's your body and your
    It's your body and your life. If you want to try all 9 drugs, then go for it. I think what you're really upset about, deep down, is the way the doctor expressed himself - honest, maybe, but definitely brutal. It's hard for all of us to hear the "T word" but I decided at the very beginning that I'm going to live until I die and I'm not going to stress over how far down the road that might be. After all, we're ALL terminal.

    I tell people that my chances are either 100% or zero - either the cancer will kill me, or it won't. Anything in between is just speculation, and a waste of time.

    The cancer isn't going to kill you tomorrow, or next week, but you could get hit by a bus tomorrow, so my advice is don't drive yourself crazy over something you can't control.

    Don't let this guy, or cancer, for that matter, ruin the rest of your life, whether that's 30 days or 30 years.

    Carlene
  • karen1951
    karen1951 Member Posts: 103

    It's your body and your
    It's your body and your life. If you want to try all 9 drugs, then go for it. I think what you're really upset about, deep down, is the way the doctor expressed himself - honest, maybe, but definitely brutal. It's hard for all of us to hear the "T word" but I decided at the very beginning that I'm going to live until I die and I'm not going to stress over how far down the road that might be. After all, we're ALL terminal.

    I tell people that my chances are either 100% or zero - either the cancer will kill me, or it won't. Anything in between is just speculation, and a waste of time.

    The cancer isn't going to kill you tomorrow, or next week, but you could get hit by a bus tomorrow, so my advice is don't drive yourself crazy over something you can't control.

    Don't let this guy, or cancer, for that matter, ruin the rest of your life, whether that's 30 days or 30 years.

    Carlene

    carlene.. you hit the nail
    carlene.. you hit the nail on the head...i knew going in what the real deal is...i guess i was just hoping that this doctor would give me SOME glimmer of hope. his first words were...."when you are having this many pet/catscans you're in big trouble!" but for him to basically tell me to give up if the gemzar doesn't work was (i think) out of line. it's up to me to decide when i've had enough. i have adopted your philosophy about all of this being out of my control. only God knows so i'm leaving it in His hands.....thank you for all your support and best wishes and prayers to you....karen