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WOW...am i bummed out

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

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

Robkel7
Posts: 68
Joined: Aug 2011

I will be praying for you Karen....may God lean down and touch you with His mighty hand.

Robin

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

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's picture
kikz
Posts: 1266
Joined: Jun 2010

"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

karen1951's picture
karen1951
Posts: 103
Joined: Oct 2011

tina...thank you so much for all your kind thoughts.....i've read your profile and you remind me so much of ME....we've shared a lot of the same experiences. i will keep you in my prayers ..... all the best....karen

Cafewoman53's picture
Cafewoman53
Posts: 732
Joined: Jul 2010

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's picture
karen1951
Posts: 103
Joined: Oct 2011

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's picture
lovesanimals
Posts: 1209
Joined: Sep 2011

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
Posts: 132
Joined: Oct 2010

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

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

I recently found out about a program that specializes in treating stage IV ovarian cancer:

www.knouseprogram.com

I heard the treatment was very expensive and only has anecdotal evidence.

mopar
Posts: 1948
Joined: May 2003

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's picture
Mwee
Posts: 1312
Joined: Nov 2009

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's picture
clamryn
Posts: 508
Joined: Jun 2010

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

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

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!!!

mom2greatkids's picture
mom2greatkids
Posts: 511
Joined: Jun 2011

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's picture
JoWin615
Posts: 132
Joined: Feb 2011

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's picture
JoWin615
Posts: 132
Joined: Feb 2011

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

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

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's picture
karen1951
Posts: 103
Joined: Oct 2011

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

LoveButterflies's picture
LoveButterflies
Posts: 73
Joined: Feb 2012

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

paris11
Posts: 132
Joined: Oct 2010

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

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

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's picture
karen1951
Posts: 103
Joined: Oct 2011

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

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I agree that I would definately take all 9 drugs and by then there may be some new ones. If it were possible I think I would just go talk to another doctor. Prayers are sent and hugs are coming your way. Giving up is not an option!

Lisak
Posts: 59
Joined: Mar 2009

Karen.. You are in my prayers.

Honordon's picture
Honordon
Posts: 49
Joined: Jun 2011

go for it and then like some said there may be more , YOU ARE SO IN MY PRAYERS ..........am same I will just keep fighting these dam tumors as they pop up their ugly heads and hopefully most of us will continue to live nicely with cancer , might not be able to beat it but sure can learn to live with it .. hugs Donna :)

emtliza
Posts: 1
Joined: Apr 2012

Try natural things to. Like graviola extract or the plant named colombiana. Google it for info

kimberly sue 63's picture
kimberly sue 63
Posts: 389
Joined: Apr 2012

I'm sorry Karen, it is a lot to absorb. One day at a time. Your doctor is right, there are new things coming out all the time. Try to stay positive and strong.

my life
Posts: 4
Joined: May 2011

Karen, my prayers are with you tonight and every night as long as you need them. I believe in the power of prayer and more so, in the power of positive thinking. Allow yourself to cry a little, then pick yourself up and say 'what's my next move'. You keep making the decisions, don't let your disease do it for you.

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