Ovarian Cancer Stage 4 survivors

24

Comments

  • angiedryden
    angiedryden Member Posts: 58
    #22
    nancy591 said:

    MSKCC website
    I recv my treatment at memorial sloan kettering cancer care. If you go to MSKCC.org they have a clinical trial link. Of course it only talks about the trials they are doing. Educate yourself about the different phases of clinical trials. I don't think I would do a stage I or even a stage II trial. At least not at this point in my illness. I have not participated in a clinical trial although I did qualify for one whe I was first diagnosed. It is the ongoing trial carbo/taxol and avastin. My oncologist did not recommend it because I had an illeostomy at the time. Avastin has the potential of causing bowel perforation. I was told if my current therapy(for my first recurrence) doesn't work I could either do traditional treatment or there are 3 new trials opening up at sloan kettering. I haven't looked into the trials yet but I already told my oncologist I am not interested in stage I or II trials.

    Thanks Nancy
    Thanks so much for the info. There is just so much to take in. I just want to learn as much as possible so we will know the choices out there.

    Angie
  • Amanda_75
    Amanda_75 Member Posts: 3
    #23
    leesag said:

    Hi wannaknow,
    I know how
    Hi wannaknow,

    I know how how you feel (sorta) I was diagnosed stage IIIC in January. I look at it this way, the five year statistics you read today are for women who were diagnosed five years ago, many advances have been made since then, so the five year stats will be way different every year. Keep the faith honey, and join some of the more recent threads.

    HUGS!

    Leesa

    Great comment
    Leesa, Your post makes my heart happy. You're absolutely right. Thanks for sharing.

    I am stage IV diagnosed July 12 and today marks my 1/2 way point w/my carbo/taxil/avastin concoction. I know that a positive attitude will only help. Thanks for your inspiration.

    Amanda
  • Amanda_75
    Amanda_75 Member Posts: 3
    #24
    angiedryden said:

    Thanks Nancy
    Thanks so much for the info. There is just so much to take in. I just want to learn as much as possible so we will know the choices out there.

    Angie

    success stories, please
    Hi Angie,
    First of all, I hope and pray that your mom is doing well. I have been browsing around this message board for a while and can tell you that the women on here are very amazing. After reading through,I feel like I already know many of you. I guess this thread finally gave me the guts to post.

    I am hoping to 'bump' this message back to the top. I was diagnosed on July 12 w/Stage IV and would love to hear your inspirational survivor stories. Today marks my 1/2 way point w/my 6 cycles of chemotherapy. I am getting carbo and taxil and avastin. My numbers have been good and I've been moving through the treatments alright. My last CA-125 count was 33 and I'm getting the next blood test done this week. I'm hoping that number is down even more. I haven't completely healed from my hysterectomy-debulking, so I have missed two carbo treatments in my IP port. They have gone in my IV. I am praying that it heals, so the carbo can go directly in my belly to the 'problem areas.' Of course, I am scared to pieces. I hate it when I hear people talk about my 'survivability.' I know the hardest may be yet to come when I'm done w/treatments and the word 'reoccurrence' keeps coming up. It does me good to hear success stories. PLEASE, I would love to hear success stories to keep me positive throughout this scary mess.

    Thanks, Amanda
  • KarynH
    KarynH Member Posts: 32
    #25
    Amanda_75 said:

    success stories, please
    Hi Angie,
    First of all, I hope and pray that your mom is doing well. I have been browsing around this message board for a while and can tell you that the women on here are very amazing. After reading through,I feel like I already know many of you. I guess this thread finally gave me the guts to post.

    I am hoping to 'bump' this message back to the top. I was diagnosed on July 12 w/Stage IV and would love to hear your inspirational survivor stories. Today marks my 1/2 way point w/my 6 cycles of chemotherapy. I am getting carbo and taxil and avastin. My numbers have been good and I've been moving through the treatments alright. My last CA-125 count was 33 and I'm getting the next blood test done this week. I'm hoping that number is down even more. I haven't completely healed from my hysterectomy-debulking, so I have missed two carbo treatments in my IP port. They have gone in my IV. I am praying that it heals, so the carbo can go directly in my belly to the 'problem areas.' Of course, I am scared to pieces. I hate it when I hear people talk about my 'survivability.' I know the hardest may be yet to come when I'm done w/treatments and the word 'reoccurrence' keeps coming up. It does me good to hear success stories. PLEASE, I would love to hear success stories to keep me positive throughout this scary mess.

    Thanks, Amanda

    Survivor
    Hi Amanda.

    My mom was diagnosed 1 year ago, stage 4, and will have her last initial round of chemo September 30. She is doing very well!! Her latest CT scan showed no evidence of disease and her CA-125 before her last chemo was 36.

    She started with carbo/taxol and avastin was added later. She did not receive debulking surgery. For reasons that are still a little unclear to me, her Dr.s did not recommend it for her at that time. Her treatments have taken 3 times longer than the norm, as her marker came down very very slowly. Aside from the 4 or 5 days after chemo, she has tolerated the treatments very well.

    Please click on my profile to read more about her journey.
  • 8isenough
    8isenough Member Posts: 16
    #26
    elishaw you read my mind
    my mom has adv ovc and i thought last night i would like to ask that very same question,is there anyone whos a survivor of this and how did thet do it? God bless K.S
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #27
    8isenough said:

    elishaw you read my mind
    my mom has adv ovc and i thought last night i would like to ask that very same question,is there anyone whos a survivor of this and how did thet do it? God bless K.S

    Absolutely....some do
    Absolutely....some do survive, even Stage IV. How is not always something withing our control. Number one is the skill of the surgeon, if they have surgery. The better the surgeon, the less chance of recurrence. Next is how well they respond to chemo. Some people are like the Energizer Bunny....they just keep bouncing back. I know a woman (in real life) who has survived 12 years with advanced, recurrent OC. She has been on chemo more than off during that time, but she seems to respond well to every single "cocktail" and just keeps on kicking cancer's butt. Currently she is being treated for mets to her back.

    Carlene
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #28
    Hissy_Fitz said:

    Absolutely....some do
    Absolutely....some do survive, even Stage IV. How is not always something withing our control. Number one is the skill of the surgeon, if they have surgery. The better the surgeon, the less chance of recurrence. Next is how well they respond to chemo. Some people are like the Energizer Bunny....they just keep bouncing back. I know a woman (in real life) who has survived 12 years with advanced, recurrent OC. She has been on chemo more than off during that time, but she seems to respond well to every single "cocktail" and just keeps on kicking cancer's butt. Currently she is being treated for mets to her back.

    Carlene

    The better the surgeon, the
    The better the surgeon, the less chance of recurrence?
    Its the first time i have heard of that. If cancer has metatasized, often surgery is not a viable option. Recurrance is based on where the cancer cells have traveled and often can be mircoscopic for a time until detectable. The path report often determines the chances of recurrance and the stage
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #29
    HeartofSoul said:

    The better the surgeon, the
    The better the surgeon, the less chance of recurrence?
    Its the first time i have heard of that. If cancer has metatasized, often surgery is not a viable option. Recurrance is based on where the cancer cells have traveled and often can be mircoscopic for a time until detectable. The path report often determines the chances of recurrance and the stage

    When de-bulking is optimal,
    When de-bulking is optimal, and possible, the patient has a substantially better chance of long-term survival, according to numerous studies. Mets to disant organs/systems, of course, would not be affected by initial de-bulking surgery. It is generally supposed that those secondary tumors would respond to chemotherapy. I quote here:

    From the National Alliance on Ovarian Cancer Conference Summary...
    "Aggressive surgery continues to be linked to better outcomes; one study showed that optimal debulking gives patients a median overall survival of 80 months."

    MedPage Today, Sven Mahner, MD, of University Medical Center Hamburg-Eppendorf in Hamburg, Germany, reporting at the American Society of Clinical Oncology meeting.
    "Our data show that the prognostic importance of initial surgery extends beyond initial treatment to recurrent disease, particularly for patients who have a platinum-free interval of more than 12 months."

    Journal of Oncology, April, 2009
    "There is agreement that one of the most important prognostic factors for survival in the treatment of ovarian cancer is the amount of residual tumour after cytoreduction."
  • leesag
    leesag Member Posts: 621 Member
    #30
    Hissy_Fitz said:

    When de-bulking is optimal,
    When de-bulking is optimal, and possible, the patient has a substantially better chance of long-term survival, according to numerous studies. Mets to disant organs/systems, of course, would not be affected by initial de-bulking surgery. It is generally supposed that those secondary tumors would respond to chemotherapy. I quote here:

    From the National Alliance on Ovarian Cancer Conference Summary...
    "Aggressive surgery continues to be linked to better outcomes; one study showed that optimal debulking gives patients a median overall survival of 80 months."

    MedPage Today, Sven Mahner, MD, of University Medical Center Hamburg-Eppendorf in Hamburg, Germany, reporting at the American Society of Clinical Oncology meeting.
    "Our data show that the prognostic importance of initial surgery extends beyond initial treatment to recurrent disease, particularly for patients who have a platinum-free interval of more than 12 months."

    Journal of Oncology, April, 2009
    "There is agreement that one of the most important prognostic factors for survival in the treatment of ovarian cancer is the amount of residual tumour after cytoreduction."

    Optimal Debulking?
    The question is, what is considered optimal debulking? My gyn/onc (one of the best in the country from all reports) stated that he got "95% of the cancer" during my surgery and was confident that chemo would take care of any remaining cancer. A subseqent CT scan showed a tumor of approximately 1.5 cm that had grown between surgery and chemo. My CT after 6 rounds of carbo/taxol was completely clear.

    Apparently, while my surgeon removed 95% of the cancer, my cancer was very aggressive and rapidly growing.

    *sigh* I find if I try to wrap my head around stats and what they mean for me, I need an ativan. I fear that I am one of those people who will live in the moment with this disease and try not to think about it too often between doctor appointments.

    For the moment, I'll focus on my clean CT and deal with any future problems if or when they show up.

    Hugs and Prayers!

    Leesa
  • djinco
    djinco Member Posts: 87
    #31
    Hissy_Fitz said:

    When de-bulking is optimal,
    When de-bulking is optimal, and possible, the patient has a substantially better chance of long-term survival, according to numerous studies. Mets to disant organs/systems, of course, would not be affected by initial de-bulking surgery. It is generally supposed that those secondary tumors would respond to chemotherapy. I quote here:

    From the National Alliance on Ovarian Cancer Conference Summary...
    "Aggressive surgery continues to be linked to better outcomes; one study showed that optimal debulking gives patients a median overall survival of 80 months."

    MedPage Today, Sven Mahner, MD, of University Medical Center Hamburg-Eppendorf in Hamburg, Germany, reporting at the American Society of Clinical Oncology meeting.
    "Our data show that the prognostic importance of initial surgery extends beyond initial treatment to recurrent disease, particularly for patients who have a platinum-free interval of more than 12 months."

    Journal of Oncology, April, 2009
    "There is agreement that one of the most important prognostic factors for survival in the treatment of ovarian cancer is the amount of residual tumour after cytoreduction."

    Optimal De-bulking Surgery
    I am extremely grateful to my surgeon, Dr. Dirk Pikaart, at Penrose Cancer Center in Colorado Springs, CO. I had my complete hysterectomy and omentectomy on February 1, 2010. I am responding well to all treatments received thus far and am currently on consolidation Taxol chemotherapy. I was diagnosed with ovarian stage IIIc and uterine stage II.

    I concur with all you said about optimal debulking surgery. A surgeon's skills seems of paramount necessity for one's long term well-being.

    Also, my faith in Jesus sustains me daily. I pray everyday for continued healing and trust in the Lord that I have many years to share with my husband of thirty plus years. Positive attitude and not fear is what makes life enjoyable. I am grateful for every hour of every day.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #32
    leesag said:

    Optimal Debulking?
    The question is, what is considered optimal debulking? My gyn/onc (one of the best in the country from all reports) stated that he got "95% of the cancer" during my surgery and was confident that chemo would take care of any remaining cancer. A subseqent CT scan showed a tumor of approximately 1.5 cm that had grown between surgery and chemo. My CT after 6 rounds of carbo/taxol was completely clear.

    Apparently, while my surgeon removed 95% of the cancer, my cancer was very aggressive and rapidly growing.

    *sigh* I find if I try to wrap my head around stats and what they mean for me, I need an ativan. I fear that I am one of those people who will live in the moment with this disease and try not to think about it too often between doctor appointments.

    For the moment, I'll focus on my clean CT and deal with any future problems if or when they show up.

    Hugs and Prayers!

    Leesa

    The fact that your doctor
    The fact that your doctor was unable to remove 5% of your cancer does not have any bearing on whether your surgery was optimal or not. Optimal de-bulking means that although multiple tumors may have been left behind, no one tumor was larger than 1cm. So it definitely sounds like your de-bulking was optimal, Leesa. The tumor that grew to 1.5cm between surgery and chemo was almost certainly a microscopic dot at the time of your surgery.

    Just 10 years ago, the standard was 2cm. The bar was raised (or should I say "lowered")due to the innovation of better tools and surgical techniques.

    A few doctors advocate "ultra"-radical de-bulking surgery, which may involve removing parts of the liver, spleen, lung, multiple portions of the bowel, and lymph nodes in areas that many surgeons consider very risky.
    Not all patients can tolerate this 6-8 hour surgery well and not all surgeons are comfortable performing these procedures. The goal is to achieve a microscopic ("sand" size) "optimal" surgery, but there is a lot of disagreement as to whether or not such aggressive surgery really impacts long-term survival.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #33
    Hissy_Fitz said:

    When de-bulking is optimal,
    When de-bulking is optimal, and possible, the patient has a substantially better chance of long-term survival, according to numerous studies. Mets to disant organs/systems, of course, would not be affected by initial de-bulking surgery. It is generally supposed that those secondary tumors would respond to chemotherapy. I quote here:

    From the National Alliance on Ovarian Cancer Conference Summary...
    "Aggressive surgery continues to be linked to better outcomes; one study showed that optimal debulking gives patients a median overall survival of 80 months."

    MedPage Today, Sven Mahner, MD, of University Medical Center Hamburg-Eppendorf in Hamburg, Germany, reporting at the American Society of Clinical Oncology meeting.
    "Our data show that the prognostic importance of initial surgery extends beyond initial treatment to recurrent disease, particularly for patients who have a platinum-free interval of more than 12 months."

    Journal of Oncology, April, 2009
    "There is agreement that one of the most important prognostic factors for survival in the treatment of ovarian cancer is the amount of residual tumour after cytoreduction."

    debulking
    My 9hr surgery was considered optimal. After 5 rounds of IV carbo/taxol I was NED via ct scan with a ca125 of 8. My illeostomy was reversed, a 2nd look & biopsy were done as well as an IP port placed. No cancer was seen and biposies were negative. I went on to receive 3 additional IP treatment of cisplat/taxol. I recurred within 8 months post chemo.
  • msfanciful
    msfanciful Member Posts: 559
    #34
    I'm a stage iv ovarian
    I'm a stage iv ovarian cancer surivor of almost 4 years
    this coming February 2011.

    Although not without it's challenges, although that is to be expected.

    I've been in and out of just as many chemo treatments and am currently in remission again.

    I expect with stage iv, chemo will just always be a way of life (off and on) for me and that's okay because I have still managed to have a very fulfilling, active and unincumbered lifestyle.

    So I count my blessings and that's a wonderful thing.

    It's just how you choose to perceive your condition as well.


    Sharon
  • JosieO
    JosieO Member Posts: 12
    #35
    msfanciful said:

    I'm a stage iv ovarian
    I'm a stage iv ovarian cancer surivor of almost 4 years
    this coming February 2011.

    Although not without it's challenges, although that is to be expected.

    I've been in and out of just as many chemo treatments and am currently in remission again.

    I expect with stage iv, chemo will just always be a way of life (off and on) for me and that's okay because I have still managed to have a very fulfilling, active and unincumbered lifestyle.

    So I count my blessings and that's a wonderful thing.

    It's just how you choose to perceive your condition as well.


    Sharon

    Survivor
    Sharon I to believe it's how you choose to perceive your condition.
    I think waking up everyday after being diagnosed with stage 4 Ovarian cancer you are considered a survivor. I think for every minute you decide to continue to fight back and keep a positive attitude and not let cancer win you are a survivor. I don't believe it can be defined by days, weeks or years. As long as you are here at this moment your are a SURVIVOR!

    Josie
  • angiedryden
    angiedryden Member Posts: 58
    #36
    JosieO said:

    Survivor
    Sharon I to believe it's how you choose to perceive your condition.
    I think waking up everyday after being diagnosed with stage 4 Ovarian cancer you are considered a survivor. I think for every minute you decide to continue to fight back and keep a positive attitude and not let cancer win you are a survivor. I don't believe it can be defined by days, weeks or years. As long as you are here at this moment your are a SURVIVOR!

    Josie

    Hi Amanda
    I wanted to let you know my mom has one more chemo and she will be finished for now we hope. Her CA-125 is 4.8 which is excellent. She has done so well with the chemo, with only a few minor setbacks. I hope you are doing well. I truly believe you have to keep the positive attitude..it has really helped my mom. I'm not saying she hasn't had a few bad days but she has for the most part been so positive. I will send up some prayers for you and all the other wonderful women on here.
  • Unknown
    Unknown
    #37
    angiedryden said:

    Hi Amanda
    I wanted to let you know my mom has one more chemo and she will be finished for now we hope. Her CA-125 is 4.8 which is excellent. She has done so well with the chemo, with only a few minor setbacks. I hope you are doing well. I truly believe you have to keep the positive attitude..it has really helped my mom. I'm not saying she hasn't had a few bad days but she has for the most part been so positive. I will send up some prayers for you and all the other wonderful women on here.

    This comment has been removed by the Moderator
  • Pusteblume
    Pusteblume Member Posts: 3
    #38
    Stage IV
    I was DX May 2010 with ovarian cancer and had 1st.recurrene December 2010.
    I am currently ip Chemotherapy.
  • laurenrae
    laurenrae Member Posts: 4
    #39
    msfanciful said:

    I'm a stage iv ovarian
    I'm a stage iv ovarian cancer surivor of almost 4 years
    this coming February 2011.

    Although not without it's challenges, although that is to be expected.

    I've been in and out of just as many chemo treatments and am currently in remission again.

    I expect with stage iv, chemo will just always be a way of life (off and on) for me and that's okay because I have still managed to have a very fulfilling, active and unincumbered lifestyle.

    So I count my blessings and that's a wonderful thing.

    It's just how you choose to perceive your condition as well.


    Sharon

    Hi Sharon
    I would love to chat with you.

    I look at you and you remind me so much of my mother! She was diagnosed stage 4 in 2009 but it's almost like aside from the cancer, there is nothing wrong with her!

    I am just really interested in your experience becuase you and my mother's situation is very similar.

    I hope you are open to that - thank you for sharing your story :-)

    Lauren
  • carmi604
    carmi604 Member Posts: 4
    #40
    Hissy_Fitz said:

    Me, too. Realistically, I
    Me, too. Realistically, I have to assume that some of them lost the battle, but I'm thinking that others simply tired of being focused on cancer all the time and dropped off the board to live their lives. I know that happens consistently on other forums, with other issues.

    Unlike some of the other message sites, this one does not have a memoriam page. Maybe that is by design, and maybe it's for the best.

    Carlene

    saying good bye to chemos
    Dear Hissy, Thanks for your insightful messages. I was diagnosed with OC three years ago, had chemo and surgery and further chemos, the last of them making me really sick. Having recoverred from the chemo I now feel I don't want any more. It takes weeks and months, feeling miserable long after, at least thie was my reaction to Doxil. Now I feel fully OK although the growths are still there, probably growing, but my doctor says my venerable age is an asset because the cells don't divide so rapidly... Anyway, I am one of whom you said they had enough of treatments, and just live with the beast. I never had pains. So maybe I'll be on the lucky side of the stats.
  • carmi604
    carmi604 Member Posts: 4
    #41
    Hissy_Fitz said:

    Me, too. Realistically, I
    Me, too. Realistically, I have to assume that some of them lost the battle, but I'm thinking that others simply tired of being focused on cancer all the time and dropped off the board to live their lives. I know that happens consistently on other forums, with other issues.

    Unlike some of the other message sites, this one does not have a memoriam page. Maybe that is by design, and maybe it's for the best.

    Carlene

    saying good bye to chemos
    Dear Hissy, Thanks for your insightful messages. I was diagnosed with OC three years ago, had chemo and surgery and further chemos, the last of them making me really sick. Having recoverred from the chemo I now feel I don't want any more. It takes weeks and months, feeling miserable long after, at least thie was my reaction to Doxil. Now I feel fully OK although the growths are still there, probably growing, but my doctor says my venerable age is an asset because the cells don't divide so rapidly... Anyway, I am one of whom you said they had enough of treatments, and just live with the beast. I never had pains. So maybe I'll be on the lucky side of the stats.

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