Stage 4 feel good story

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Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
Here's another inspiring story from the Inspire message boards.

I was diagnosed in 2004, (stage 4) treated and had a three year remission. In 2008, my Ca 125 went from 7 to 48 in three months time. A week later it was 62 and a week after that it was 82. The ct scan showed only fluid in the pelvic area. My doc assured me that it was a recurrance. I asked if we should biopsy the fluid. She said that she was 99% sure that it would show cancer. With that info, along with her recomendation, I went ahead and did more treatment. I've always gone for the most agressive approach and I probably would not have enjoyed waiting to see if more cancer developed months later. It made logical sense to me that treating it early on, before it had gotten worse, would have a better outcome even tho recent studies have shown otherwise. Once I started chemo again my ca125 dropped back to normal and the fluid resolved. So I guess it really was a recurrance. I am in remission again.

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  • kikz
    kikz Member Posts: 1,345 Member
    #2
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    Hi Carlene
    You have been in remission since 2008? I hope you continue to do well. So the idea is to catch a recurrence early and get back in remission. Is the problem that at some point the treatment doesn't work? I want to know and don't want to know the answer to this. Why is the mortality rate so high with all the treatments available? I try to stay in the moment but it's hard when the mortality rate is practically the first thing brought up when ovarian cancer is discussed or read about. I need to be hopeful. I try but it is a constant battle and sometimes I get tired. I feel like I have to be the cheerleader for my family and friends but resent it at the same time. This is hard on everyone and I hate that it is consuming all of our lives. Like I said in another post, I guess I am having a bad day and it it overcast here in California which doesn't help. Thanks for the opportunity to vent.

    Luv, Karen
  • sanam
    sanam Member Posts: 106
    #3
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    kikz said:

    Hi Carlene
    You have been in remission since 2008? I hope you continue to do well. So the idea is to catch a recurrence early and get back in remission. Is the problem that at some point the treatment doesn't work? I want to know and don't want to know the answer to this. Why is the mortality rate so high with all the treatments available? I try to stay in the moment but it's hard when the mortality rate is practically the first thing brought up when ovarian cancer is discussed or read about. I need to be hopeful. I try but it is a constant battle and sometimes I get tired. I feel like I have to be the cheerleader for my family and friends but resent it at the same time. This is hard on everyone and I hate that it is consuming all of our lives. Like I said in another post, I guess I am having a bad day and it it overcast here in California which doesn't help. Thanks for the opportunity to vent.

    Luv, Karen

    Dear Karen
    Sorry for stepping in the communication between you and Carlen.This is a story from another discussion board called inspire.com.
    Our dear Carlen was diagnosed in 2009.
    Love and hugs
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
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    kikz said:

    Hi Carlene
    You have been in remission since 2008? I hope you continue to do well. So the idea is to catch a recurrence early and get back in remission. Is the problem that at some point the treatment doesn't work? I want to know and don't want to know the answer to this. Why is the mortality rate so high with all the treatments available? I try to stay in the moment but it's hard when the mortality rate is practically the first thing brought up when ovarian cancer is discussed or read about. I need to be hopeful. I try but it is a constant battle and sometimes I get tired. I feel like I have to be the cheerleader for my family and friends but resent it at the same time. This is hard on everyone and I hate that it is consuming all of our lives. Like I said in another post, I guess I am having a bad day and it it overcast here in California which doesn't help. Thanks for the opportunity to vent.

    Luv, Karen

    Not me, Karen....this was
    Not me, Karen....this was cut and pasted from another discussion board (inspire.com). I post these here when I run across them because they bring hope and sunshine to many others.

    The problem with Ovarian Cancer is that it comes back - not always, but almost always. It's generally found late (stage 3 or 4) and by then has seeded to other sites, such as the abdomen. Not one single, defined tumor, but thousands of little tiny specs, any one of which has the potential to become full-blown OC, given enough time. Just like surgery is often unable to "get" every speck, chemo sometimes fails to kill off every malignant cell.

    The mortality rate is high because OC is often recurrent, and with each recurrence, there are issues with treatment choices - some no longer work; sometimes the cancer has spread to a vital organ; sometimes it just invades and shuts down the gastro system, little by litte.

    I have bad days, too. I think we all have them. The mortality rate is what it is. But remember that not all of us will die from OC. About 35% will surive more than 5 years - even the ones diagnosed late. Who is to say you won't be one of them?


    Carlene
    I cannot control the wind, but I can adjust my sails
  • msfanciful
    msfanciful Member Posts: 559
    #5
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    Hello Carlene,
    Your
    Hello Carlene,

    Your oncologist and mine must have tea together.

    My doctor also believes in treating my cancer agressively. Today was my last 12week weekly Taxol treatment. Because of her aggressive approach, I believe is why I'm still here today.

    She doesn't believe in letting my lymph-nodes enlarging too much nor my numbers rising too high to fast. So far her technique has kept me on this earth now for 3 years and 3 months and I pray for 3 more.

    Nevertheless, she just doesn't believe in ever letting the cancer get a hold.

    So currently, my number is still 3, all my lymph-nodes are back to normal and looks as if I will have at least a 2 month break before I see her again.

    So I'm in remission, yipppeee! ! !

    Sharon
  • azgrandma
    azgrandma Member Posts: 609 Member
    #6
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    msfanciful said:

    Hello Carlene,
    Your
    Hello Carlene,

    Your oncologist and mine must have tea together.

    My doctor also believes in treating my cancer agressively. Today was my last 12week weekly Taxol treatment. Because of her aggressive approach, I believe is why I'm still here today.

    She doesn't believe in letting my lymph-nodes enlarging too much nor my numbers rising too high to fast. So far her technique has kept me on this earth now for 3 years and 3 months and I pray for 3 more.

    Nevertheless, she just doesn't believe in ever letting the cancer get a hold.

    So currently, my number is still 3, all my lymph-nodes are back to normal and looks as if I will have at least a 2 month break before I see her again.

    So I'm in remission, yipppeee! ! !

    Sharon

    hope to be survivor
    I wish and hope all of us can be survivors
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #7
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    msfanciful said:

    Hello Carlene,
    Your
    Hello Carlene,

    Your oncologist and mine must have tea together.

    My doctor also believes in treating my cancer agressively. Today was my last 12week weekly Taxol treatment. Because of her aggressive approach, I believe is why I'm still here today.

    She doesn't believe in letting my lymph-nodes enlarging too much nor my numbers rising too high to fast. So far her technique has kept me on this earth now for 3 years and 3 months and I pray for 3 more.

    Nevertheless, she just doesn't believe in ever letting the cancer get a hold.

    So currently, my number is still 3, all my lymph-nodes are back to normal and looks as if I will have at least a 2 month break before I see her again.

    So I'm in remission, yipppeee! ! !

    Sharon

    Hello Sharon
    Your news is so good and I am sure you will be here for much longer with such a positive doctor. I am so pleased for you, much love Tina xx
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #8
    Options
    kikz said:

    Hi Carlene
    You have been in remission since 2008? I hope you continue to do well. So the idea is to catch a recurrence early and get back in remission. Is the problem that at some point the treatment doesn't work? I want to know and don't want to know the answer to this. Why is the mortality rate so high with all the treatments available? I try to stay in the moment but it's hard when the mortality rate is practically the first thing brought up when ovarian cancer is discussed or read about. I need to be hopeful. I try but it is a constant battle and sometimes I get tired. I feel like I have to be the cheerleader for my family and friends but resent it at the same time. This is hard on everyone and I hate that it is consuming all of our lives. Like I said in another post, I guess I am having a bad day and it it overcast here in California which doesn't help. Thanks for the opportunity to vent.

    Luv, Karen

    Hello Karen
    I hear what you are saying about "being the cheerleader for the family" That is the thing us women do isn't it? Protect our loved ones from hurt, but what about us? My girlfriend is always telling me to look after me. She said I should "tell" my friends and family when I am feeling sad or upset and that they will understand. Its OK to have a bad day - I had a bad 2 days yesterday and I just felt so bad. But today I'm much better because I had a heart to heart with my best friend and I do quite feel so alone.

    These boards are a good place to "vent" as we all know & understand what you are going through.

    Love Tina xx
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #9
    Options
    msfanciful said:

    Hello Carlene,
    Your
    Hello Carlene,

    Your oncologist and mine must have tea together.

    My doctor also believes in treating my cancer agressively. Today was my last 12week weekly Taxol treatment. Because of her aggressive approach, I believe is why I'm still here today.

    She doesn't believe in letting my lymph-nodes enlarging too much nor my numbers rising too high to fast. So far her technique has kept me on this earth now for 3 years and 3 months and I pray for 3 more.

    Nevertheless, she just doesn't believe in ever letting the cancer get a hold.

    So currently, my number is still 3, all my lymph-nodes are back to normal and looks as if I will have at least a 2 month break before I see her again.

    So I'm in remission, yipppeee! ! !

    Sharon

    Sharon, that is TERRIFIC!!!
    Sharon, that is TERRIFIC!!! Three is an incredible number. And the lymph nodes.....that's huge.

    My doctor is actually very conservative. He won't do the weekly Taxol, except as active treatment. I wanted to do IP chemo and he refused. Today (my fourth out of twelve monthly maintenance Taxol treatments), I mentioned how tired I still am. Last month, he just said, "Well, your blood work looks good. It's probably just because we're trying to poison you." But today, he said, "You do not have to do this. You are doing very well. You might do just as well and feel better if you stop the Taxol." Quality of life, and all that. There is, after all, no concrete evidence that it will extend my life (although I fail to understand how, if it can push back a recurrence, that would not extend my life). I basically said, "Are you out of your mind?" I absolutely would not consider abandoning the maintenance. Question now is: if my counts (red and white blood cells and/or platlets) tank, will he treat my symptoms and let me continue treatment? If not, I will be one POed Texas wildcat.

    If I have a recurrence, I plan to go to MD Anderson in Houston, if they will have me.

    By the way....my husband asked if there was any reason to worry about my CA 125 levels, which went from 6.2 to 6.3, and then to 7. He said those numbers are all so far below the high-end of normal (35) that they mean absolutely nothing. The mere fact that the machine is zeroed out at the end of the day can account for tiny differences in values, even if they are taken days apart, instead of every month. So you ladies who see little bitty "jumps" in your CA 125 - don't sweat it.

    Carlene
  • kikz
    kikz Member Posts: 1,345 Member
    #10
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    Tina Brown said:

    Hello Karen
    I hear what you are saying about "being the cheerleader for the family" That is the thing us women do isn't it? Protect our loved ones from hurt, but what about us? My girlfriend is always telling me to look after me. She said I should "tell" my friends and family when I am feeling sad or upset and that they will understand. Its OK to have a bad day - I had a bad 2 days yesterday and I just felt so bad. But today I'm much better because I had a heart to heart with my best friend and I do quite feel so alone.

    These boards are a good place to "vent" as we all know & understand what you are going through.

    Love Tina xx

    Thank you
    Tina, it is so great to have people who understand. May I say, you look so young. I looked at your info because I thought you were in your twenties and I felt bad that someone so young would have this disease. Not that it is any better at a later age. I am lucky to have some friends to vent to as well but I sometimes feel guilty and hope they won't tire of hearing me talk about cancer. I know I get tired of it. It reminds me of someone who breaks up with their boyfriend and only want to talk about their ex. After a while you want to say, enough already! Today was a better day. My mom's 86th birthday. I am blessed to still have my mom. I cooked dinner and made her a cake. We had a small family gathering. Life does go on.

    Luv, Karen
  • kikz
    kikz Member Posts: 1,345 Member
    #11
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    msfanciful said:

    Hello Carlene,
    Your
    Hello Carlene,

    Your oncologist and mine must have tea together.

    My doctor also believes in treating my cancer agressively. Today was my last 12week weekly Taxol treatment. Because of her aggressive approach, I believe is why I'm still here today.

    She doesn't believe in letting my lymph-nodes enlarging too much nor my numbers rising too high to fast. So far her technique has kept me on this earth now for 3 years and 3 months and I pray for 3 more.

    Nevertheless, she just doesn't believe in ever letting the cancer get a hold.

    So currently, my number is still 3, all my lymph-nodes are back to normal and looks as if I will have at least a 2 month break before I see her again.

    So I'm in remission, yipppeee! ! !

    Sharon

    Great news Sharon!
    I already feel that good news for any lady with ov/ca is good news for all of us. It brings hope and sometimes that is all we have.

    Luv, Karen
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #12
    Options
    kikz said:

    Great news Sharon!
    I already feel that good news for any lady with ov/ca is good news for all of us. It brings hope and sometimes that is all we have.

    Luv, Karen

    I agree with Karen
    I love it everytime I read good news stories on here as it just gives everyone else such hope. We are all different and our bodies are such marvellous things. They can adapt and fight for survival. I am in the UK and I thank my lucky starts for our NHS (National Health Service) as they have treated me so well and throughly. I had really quick call back appointments and when I was really ill I was in hospital within the day and treated the same day. I do feel blessed to still be here.

    Karen, I am 50 years old and was 49 when my photo was taken. It was the evening of my very first chemo session and I was out celebrating with friends just before Christmas last year. When I get a more recent photo of myself I will post it on here.

    Tina xx

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