My Friend has Stage IV Clear Cell Ovarian Cancer

awynn804
awynn804 Member Posts: 9
in Ovarian Cancer #1
Hello to all,

I am reaching out on behalf of my girlfriend. She was recently diagnoised with Stage IV Clear Cell Ovarian Cancer that has spread to her lungs. She already had surgery and per the doctor she only has about 6 months. When you research it on the web, the statistic look grim.

Let me add that I am a Stage IV Breast Cancer survivor originally disgnoised in 2007. I don't believe any doctor can put a stamp on how much time you have left on this earth. When I was going through my first round of Chemo I found the forums very helpful and supportive.

So here I am again, hoping that someone can provide information, their experiences and support for my friend that I can pass on.

Thank you in advance.

Comments

  • mopar
    mopar Member Posts: 1,972 Member
    #2
    HOPE AND PRAYERS
    I'm so sorry to hear that your friend has been dealt this horrible situation. Although I cannot offer any personal advice (I was Stage 1C), I know there are many wonderful ladies here who will offer advice and support. In the meantime, please tell your friend there is ALWAYS hope, and seeking a second opinion might be recommended. Certainly, you are a true testimony and inspiration with your own personal journey! I agree that no one can predict our future.

    Sending lots of hugs and prayers to you both, and to her family as well. Please keep us informed.

    (((HUGS)))
    Monika
  • karen1951
    karen1951 Member Posts: 103
    #3
    stage IV survivor
    i was diagnosed stage IV ovarian in august of 2010....it was diagnosed when i was having trouble breathing....i had 3 litres of fluid in my right lung and 2 litres in my left lung..had all drained and a 6 hour debulking surgery and 6 rounds of carbo/taxol. bottom line....it's almost 18 moonths later and i am still here. i was in remission until november and i have started on topotecan. tell your friend that i have had excellent quality of life after recovering from surgery....even with the carbo/taxol i would be down for 3 days and would bounce back. yes the statistics are very grim, but there is always hope....try to stay positive....it does help to talk to others in the same situation ... please keep us posted ...thoughts and prayers to all of us facing this demon.....karen
  • awynn804
    awynn804 Member Posts: 9
    #4
    mopar said:

    HOPE AND PRAYERS
    I'm so sorry to hear that your friend has been dealt this horrible situation. Although I cannot offer any personal advice (I was Stage 1C), I know there are many wonderful ladies here who will offer advice and support. In the meantime, please tell your friend there is ALWAYS hope, and seeking a second opinion might be recommended. Certainly, you are a true testimony and inspiration with your own personal journey! I agree that no one can predict our future.

    Sending lots of hugs and prayers to you both, and to her family as well. Please keep us informed.

    (((HUGS)))
    Monika

    Monika,
    Thank you so much
    Monika,

    Thank you so much for your response. I will pass the hugs and prayers along.

    Annette
  • awynn804
    awynn804 Member Posts: 9
    #5
    karen1951 said:

    stage IV survivor
    i was diagnosed stage IV ovarian in august of 2010....it was diagnosed when i was having trouble breathing....i had 3 litres of fluid in my right lung and 2 litres in my left lung..had all drained and a 6 hour debulking surgery and 6 rounds of carbo/taxol. bottom line....it's almost 18 moonths later and i am still here. i was in remission until november and i have started on topotecan. tell your friend that i have had excellent quality of life after recovering from surgery....even with the carbo/taxol i would be down for 3 days and would bounce back. yes the statistics are very grim, but there is always hope....try to stay positive....it does help to talk to others in the same situation ... please keep us posted ...thoughts and prayers to all of us facing this demon.....karen

    Karen,
    Your story is
    Karen,

    Your story is inspirational and I will definitely share it with my friend. She can really use some words of hope right now.

    I'll also see if I can get her to signup on this site so she can see there are others like her and she's not alone.

    Thank you for the prayers.

    Annette
  • carolenk
    carolenk Member Posts: 907 Member
    #6
    awynn804 said:

    Karen,
    Your story is
    Karen,

    Your story is inspirational and I will definitely share it with my friend. She can really use some words of hope right now.

    I'll also see if I can get her to signup on this site so she can see there are others like her and she's not alone.

    Thank you for the prayers.

    Annette

    Dear Annette
    The info on the
    Dear Annette

    The info on the Internet about clear cell cancer will say that that type doesn't usually respond to carbo/taxol BUT there are some women who DO go into remission on carbo/taxol. If your friend doesn't respond to the first line therapy, there are other chemotherapies to try.

    Let her know we are here for support.
  • ktamp
    ktamp Member Posts: 81
    #7
    carolenk said:

    Dear Annette
    The info on the
    Dear Annette

    The info on the Internet about clear cell cancer will say that that type doesn't usually respond to carbo/taxol BUT there are some women who DO go into remission on carbo/taxol. If your friend doesn't respond to the first line therapy, there are other chemotherapies to try.

    Let her know we are here for support.

    I'm on carbo/taxol for clear
    I'm on carbo/taxol for clear cell. It is the first line of treatment for clear cell as far as I know. My case went to the tumour board at md anderson and this was the recommended regimen.

    Best of luck to your friend. There is always reason for hope. It doesn't matter what stage you are, getting diagnosed with cancer is overwhelming and depressing. Ovarian is my second primary cancer. I've already defeated colon cancer and I am choosing to believe I will beat this one too.
  • mom2greatkids
    mom2greatkids Member Posts: 528
    #8
    carolenk said:

    Dear Annette
    The info on the
    Dear Annette

    The info on the Internet about clear cell cancer will say that that type doesn't usually respond to carbo/taxol BUT there are some women who DO go into remission on carbo/taxol. If your friend doesn't respond to the first line therapy, there are other chemotherapies to try.

    Let her know we are here for support.

    I was diagnosed stage 3c
    I was diagnosed stage 3c clear cell in May 2011. I am considered in full remission. Last CA 125 was 9, clean CT and petscans last month. I had carbo/taxol/avaistan, six treatments. I'm currently on avaistan for maitenance. Every 3 weeks for 1 yr. Tell you friend she will find a lot of caring and understanding ladies on this board. Also much helpful information.
  • tjpt16
    tjpt16 Member Posts: 27
    #9
    Also stage IV clear cell
    Hi There,
    Please tell your friend there is always hope. I was diagnosed with stage 4 clear cell ovarian in Nov 2009. I'm still here. I have never been in remission. had rounds of carbo/taxol, surgery, radiation and have been on various chemos constantly since summer 2010. I'm still working full-time as a school librarian in Japan and I travel back to the states every two or three weeks for chemo. Admittedly, I've slowed down, but am so thankful for everyday I have, and don't have any plans to leave this earth in the near future, God willing.

    Teresa
  • awynn804
    awynn804 Member Posts: 9
    #10
    carolenk said:

    Dear Annette
    The info on the
    Dear Annette

    The info on the Internet about clear cell cancer will say that that type doesn't usually respond to carbo/taxol BUT there are some women who DO go into remission on carbo/taxol. If your friend doesn't respond to the first line therapy, there are other chemotherapies to try.

    Let her know we are here for support.

    Thank you for taking to the
    Thank you for taking to the time to respond. I talk to her almost everyday to give her support and let her know what information in being left for her on this site.

    Thanks again.
  • awynn804
    awynn804 Member Posts: 9
    #11
    tjpt16 said:

    Also stage IV clear cell
    Hi There,
    Please tell your friend there is always hope. I was diagnosed with stage 4 clear cell ovarian in Nov 2009. I'm still here. I have never been in remission. had rounds of carbo/taxol, surgery, radiation and have been on various chemos constantly since summer 2010. I'm still working full-time as a school librarian in Japan and I travel back to the states every two or three weeks for chemo. Admittedly, I've slowed down, but am so thankful for everyday I have, and don't have any plans to leave this earth in the near future, God willing.

    Teresa

    To all,
    My friend, Donna,
    To all,

    My friend, Donna, has a follow up appointment from her surgery on Wednesday and I think they will decide how to proceed depending on how she is healing from the surgery.

    She said she's not up to getting on the internet yet herself but I have been copying and forwarding all of your messages. She wanted me to make sure to thank you all. Your messages have helped her with her fear what she has to face.

    A big thank you from me as well. It great to have such a great support group for my friend and me.

    Annette
  • ILoveMyMomSoMuch
    ILoveMyMomSoMuch Member Posts: 1
    #12
    Clear Cell Carcinoma
    Hi,

    I read your posting and would love if I could ask you a few questions about your condition.

    First I would like to say that I am so sorry that you have to experience such a horrible disease.

    My Mother was diagnosised almost 4 years ago, this Oct. After her GYN missed a tumor the size of a grapefruit, she returned to her to tell her their was something wrong. After another checkup, they discover it and she went to U of Penn where she has a mass hysterectomy. She had more problems recovering from the huge incision then she did from the chemo. The mass was sitting on her pelvic bone (I think, I am a bit sketchy on details). It was cancerous and it had also hit her fallopian tube. They removed this during the hysterectomy, she ha the chemo and all was good.

    Within a year, she had problems again. She went back to find that when they removed the mass from Hyde bone, they did not scrape it well enough. Some cancer cells were in the bone pockets and it returned. She changed from the UofPenn to FixChase in Philadelphia to get treatment for the second time. She went through the whole song and dance and all was supposedly fine.

    A year latter, during a check up, they found a small mass on her ureter. They said that they are sure it's a secondary cancer which is supposed to. E better then if it was the Ovarian cancer back again, but they wanted to do a biopsy. He came back to tell us that the biopsy was inconclusive, but they were 80% sure it was a secondary cancer. The biopsy came back as the primary cancer again. She did another round of chemo.

    My parents relocated to Nebraska.from Philadelphia, so to be closer to the grandchildren. Here she sought treatment. They had found that the chemo had not worked and that it had spread. She received more chemo.

    Now, I can go on and on with the details, but really don't want to eat that much of your time up. My amulet and I have now reached a desperate level. My Mother has become very week and frail. She will not eat or drink much because she becomes nauseas and it causes too much pain. The doctors basically told her to go home and die. We want her to be given an intervenous but they say this will feed the cancer. So what, starve the host, kill the cancer? It makes no sense.

    My Father refuses to give up and will spend every penny we have, which they are comfortable as of now. I read your posting and you have given me some hope to saving her. Please, please, tell me what it is that you have done. What kind of treatments? Doctors? Anything please!!

    Thanks you so much for taking your time to read this and God bless you.

    Take Care,
    Donna
  • kikz
    kikz Member Posts: 1,345 Member
    #13
    ILoveMyMomSoMuch said:

    Clear Cell Carcinoma
    Hi,

    I read your posting and would love if I could ask you a few questions about your condition.

    First I would like to say that I am so sorry that you have to experience such a horrible disease.

    My Mother was diagnosised almost 4 years ago, this Oct. After her GYN missed a tumor the size of a grapefruit, she returned to her to tell her their was something wrong. After another checkup, they discover it and she went to U of Penn where she has a mass hysterectomy. She had more problems recovering from the huge incision then she did from the chemo. The mass was sitting on her pelvic bone (I think, I am a bit sketchy on details). It was cancerous and it had also hit her fallopian tube. They removed this during the hysterectomy, she ha the chemo and all was good.

    Within a year, she had problems again. She went back to find that when they removed the mass from Hyde bone, they did not scrape it well enough. Some cancer cells were in the bone pockets and it returned. She changed from the UofPenn to FixChase in Philadelphia to get treatment for the second time. She went through the whole song and dance and all was supposedly fine.

    A year latter, during a check up, they found a small mass on her ureter. They said that they are sure it's a secondary cancer which is supposed to. E better then if it was the Ovarian cancer back again, but they wanted to do a biopsy. He came back to tell us that the biopsy was inconclusive, but they were 80% sure it was a secondary cancer. The biopsy came back as the primary cancer again. She did another round of chemo.

    My parents relocated to Nebraska.from Philadelphia, so to be closer to the grandchildren. Here she sought treatment. They had found that the chemo had not worked and that it had spread. She received more chemo.

    Now, I can go on and on with the details, but really don't want to eat that much of your time up. My amulet and I have now reached a desperate level. My Mother has become very week and frail. She will not eat or drink much because she becomes nauseas and it causes too much pain. The doctors basically told her to go home and die. We want her to be given an intervenous but they say this will feed the cancer. So what, starve the host, kill the cancer? It makes no sense.

    My Father refuses to give up and will spend every penny we have, which they are comfortable as of now. I read your posting and you have given me some hope to saving her. Please, please, tell me what it is that you have done. What kind of treatments? Doctors? Anything please!!

    Thanks you so much for taking your time to read this and God bless you.

    Take Care,
    Donna

    The ladies
    on this board never fail to amaze me with their determination, courage and hope. I take comfort from them as I face treatment for a second time. I get hope from women who continue to face chemo in order to beat this monster back. I am so proud to be part of this group even though we all wish we could be members of a different club.

    I hope your friend gets some good news. I don't think doctors should give up on a patient. There are so many options out there. She is in my thoughts and prayers.


    Karen
  • Glad to be done
    Glad to be done Member Posts: 569
    #14
    kikz said:

    The ladies
    on this board never fail to amaze me with their determination, courage and hope. I take comfort from them as I face treatment for a second time. I get hope from women who continue to face chemo in order to beat this monster back. I am so proud to be part of this group even though we all wish we could be members of a different club.

    I hope your friend gets some good news. I don't think doctors should give up on a patient. There are so many options out there. She is in my thoughts and prayers.


    Karen

    Dont let statistics get her
    Dont let statistics get her down...... When I was diagnosed my best friends sister called me and gave me the number of her best friend. She was diagnosed with stage IV cancer that had spread to her lungs and two other places. She is clean and has not had a recurrance. That was 11 years ago this summer...... There is hope

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