Platinum-resistant disease

Disneynutt
Disneynutt Member Posts: 134 Member
in Ovarian Cancer #1
Are there any good stories from or about people with platinum-resistant disease? I feel so hopeless right now after my appointment at MD Anderson. I guess I am going to have a good cry.

Thanks a bunch all.

Kate
«1

Comments

  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #2
    Kate ,
    We are in the same
    Kate ,

    We are in the same boat as you and it sucks, mum finished her chemo at the start of December, she had her surgery in August and we were told that the surgeon had removed all visible traces of the beast , she had her baseline ct scan at the start of Jan and it is showing cancerous deposits, and cancerous fluid in her abdomen. The devil has grown while she was receiving chemo :( we thought it had all gone so well.
    I have come across a couple of stories on search engines of women who have achieved remission on there second line with platinum resistant/ refectory disease.
    If there is anyone out there Kate and I would love to hear from you.
    There is hope, do you know what you will get next xx
  • 123missy
    123missy Member Posts: 26
    #3
    MDA and platinum resistant disease
    Please tell me what happened at MDA as I am here now and looks like my first line chemo didn't hold. thanks, Betty
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #4
    123missy said:

    MDA and platinum resistant disease
    Please tell me what happened at MDA as I am here now and looks like my first line chemo didn't hold. thanks, Betty

    Hi Betty, I sure would like
    Hi Betty, I sure would like to hear your story. I am sorry you suffer. I was just very disappointed with the doctor. I know they don't want to lie to you and make promises that won't every happen but they could at least sugar coat bad news somehow. Maybe my expectations were too high but I thought they would have all kinds of chemicals that nobody else had and if not that then lots of clinical trials I could join. Well no.. no chemicals and only one chemical trial. I am going to try to get into that one at least. I just wish I could have walked out of there with a little more hope than I went in with and I didn't. Extremely bitter pill to swallow. My next drug is doxil and he actually said he didn't think it would work for me. Geez, way to go doc!!! I'm sunk before I begin.

    Who is your doctor? I was at the Orlando site. So did you get a quick recurrence?

    Kate

    I guess I don't get why they are so much better. I was not impressed.
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #5
    Mum2bellaandwilliam said:

    Kate ,
    We are in the same
    Kate ,

    We are in the same boat as you and it sucks, mum finished her chemo at the start of December, she had her surgery in August and we were told that the surgeon had removed all visible traces of the beast , she had her baseline ct scan at the start of Jan and it is showing cancerous deposits, and cancerous fluid in her abdomen. The devil has grown while she was receiving chemo :( we thought it had all gone so well.
    I have come across a couple of stories on search engines of women who have achieved remission on there second line with platinum resistant/ refectory disease.
    If there is anyone out there Kate and I would love to hear from you.
    There is hope, do you know what you will get next xx

    Hi ...I'm sorry about your
    Hi ...I'm sorry about your Mom but there is still hope!!! DO NOT FORGET THAT! There are other things out there. I wish you could remember the details of these stories or the URL to the web sites. I need some positive stories. I can't believe that all the doctors I have run into are such downers... they have no idea about how to encourage patients.

    Next is doxil. Non platinum based so maybe it'll help.

    Take care and all the best to you and your Mom. I keep you in my thoughts.

    Kate
  • 123missy
    123missy Member Posts: 26
    #6
    Disneynutt said:

    Hi Betty, I sure would like
    Hi Betty, I sure would like to hear your story. I am sorry you suffer. I was just very disappointed with the doctor. I know they don't want to lie to you and make promises that won't every happen but they could at least sugar coat bad news somehow. Maybe my expectations were too high but I thought they would have all kinds of chemicals that nobody else had and if not that then lots of clinical trials I could join. Well no.. no chemicals and only one chemical trial. I am going to try to get into that one at least. I just wish I could have walked out of there with a little more hope than I went in with and I didn't. Extremely bitter pill to swallow. My next drug is doxil and he actually said he didn't think it would work for me. Geez, way to go doc!!! I'm sunk before I begin.

    Who is your doctor? I was at the Orlando site. So did you get a quick recurrence?

    Kate

    I guess I don't get why they are so much better. I was not impressed.

    Doxil
    Kate, I am at MDA in Houston and I will be starting Doxil tomorrow. My recurrence was very quick - I was diagnosed a year ago with optimal deubulking surgery, etal. Combo of IV and IV/IP taxol/carbo (both carbo and cisplatin) finished in August with CA 125 of 20 and now back up to 174 but with evidence of very little disease on Cat scan so obviously platinum resistant or refractory. Will be having long discussion with doctor in AM before treatment. My original treatment was done at UNM in Alb. Obviously it would be better if we were not carbo resistant but I do believe there is some hope out there. Agree am not sure that they not that much better. I happen to have a home in Texas and in NM so have option of going both places. If there is any way to correspond where it doesn't go through all the channels let me know - I will be happy to let you know what I find out.
  • VickiReed
    VickiReed Member Posts: 66
    #7
    123missy said:

    Doxil
    Kate, I am at MDA in Houston and I will be starting Doxil tomorrow. My recurrence was very quick - I was diagnosed a year ago with optimal deubulking surgery, etal. Combo of IV and IV/IP taxol/carbo (both carbo and cisplatin) finished in August with CA 125 of 20 and now back up to 174 but with evidence of very little disease on Cat scan so obviously platinum resistant or refractory. Will be having long discussion with doctor in AM before treatment. My original treatment was done at UNM in Alb. Obviously it would be better if we were not carbo resistant but I do believe there is some hope out there. Agree am not sure that they not that much better. I happen to have a home in Texas and in NM so have option of going both places. If there is any way to correspond where it doesn't go through all the channels let me know - I will be happy to let you know what I find out.

    MD Anderson
    Missy-
    Who is your gyn onocologist in Houston? I have Dr. Bevers.
    Vicki
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #8
    Disneynutt said:

    Hi Betty, I sure would like
    Hi Betty, I sure would like to hear your story. I am sorry you suffer. I was just very disappointed with the doctor. I know they don't want to lie to you and make promises that won't every happen but they could at least sugar coat bad news somehow. Maybe my expectations were too high but I thought they would have all kinds of chemicals that nobody else had and if not that then lots of clinical trials I could join. Well no.. no chemicals and only one chemical trial. I am going to try to get into that one at least. I just wish I could have walked out of there with a little more hope than I went in with and I didn't. Extremely bitter pill to swallow. My next drug is doxil and he actually said he didn't think it would work for me. Geez, way to go doc!!! I'm sunk before I begin.

    Who is your doctor? I was at the Orlando site. So did you get a quick recurrence?

    Kate

    I guess I don't get why they are so much better. I was not impressed.

    Kate....have you tried
    Kate....have you tried looking for clinical trials on your own? I did just a quick search and found several that are recruiting, or will be shortly, for platinum resistant, ovarian cancer patients. Sometimes, if you want something done, you just have to do it yourself. LOL


    Carlene
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #9
    Hissy_Fitz said:

    Kate....have you tried
    Kate....have you tried looking for clinical trials on your own? I did just a quick search and found several that are recruiting, or will be shortly, for platinum resistant, ovarian cancer patients. Sometimes, if you want something done, you just have to do it yourself. LOL


    Carlene

    Hi Carlene,
    I definitely
    Hi Carlene,

    I definitely agree with you about taking command. After watching my dear Mother depart this veil of tears in June and after all my experiences with her and my doctors I have come to believe that we must be aggressive on our own behalf because nobody cares as much as we do. We have to take charge sometimes. I am not really a take charge kind of person but I'm learning fast. :-)

    How do I look around? Just google platinum-resistant drug trials? What did you use.

    I'm glad your vaccine trial is going well for you.

    Thanks a bunch,
    Kate
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #10
    123missy said:

    Doxil
    Kate, I am at MDA in Houston and I will be starting Doxil tomorrow. My recurrence was very quick - I was diagnosed a year ago with optimal deubulking surgery, etal. Combo of IV and IV/IP taxol/carbo (both carbo and cisplatin) finished in August with CA 125 of 20 and now back up to 174 but with evidence of very little disease on Cat scan so obviously platinum resistant or refractory. Will be having long discussion with doctor in AM before treatment. My original treatment was done at UNM in Alb. Obviously it would be better if we were not carbo resistant but I do believe there is some hope out there. Agree am not sure that they not that much better. I happen to have a home in Texas and in NM so have option of going both places. If there is any way to correspond where it doesn't go through all the channels let me know - I will be happy to let you know what I find out.

    @123missy Please let me know
    @123missy Please let me know how Doxil works for you.. that is my next cocktail. :-)
  • survivingovca
    survivingovca Member Posts: 23
    #11
    Disneynutt said:

    Hi Carlene,
    I definitely
    Hi Carlene,

    I definitely agree with you about taking command. After watching my dear Mother depart this veil of tears in June and after all my experiences with her and my doctors I have come to believe that we must be aggressive on our own behalf because nobody cares as much as we do. We have to take charge sometimes. I am not really a take charge kind of person but I'm learning fast. :-)

    How do I look around? Just google platinum-resistant drug trials? What did you use.

    I'm glad your vaccine trial is going well for you.

    Thanks a bunch,
    Kate

    http://clinicaltrials.gov/
    http://clinicaltrials.gov/ is the link for clinical trials. You can narrow your search criteria by type of cancer, open studies, etc.

    I am super platinum resistant (the 'super' is not part of medical terminology! :) ). I actually grew large amounts of cancer during the six rounds of taxol/carbo. It was awful, knowing I had poisoned myself with that toxic concoction, with no success. Doxil didn't work for me either (although I know it has been very helpful for other platinum resistant women). I can understand how you feel, because I was certain it was the "end" after that. Thankfully, my husband was researching all the while, about new treatments and trials etc., and I found a clinical trial that was a good fit for me and my medical circumstances. I have now been free of any treamtent for over a year, with no signs of disease. There is hope.

    You do have to conduct some of the research yourself though, to find the right 'fit' for you and your particular disease.

    Good luck!
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #12
    survivingovca said:

    http://clinicaltrials.gov/
    http://clinicaltrials.gov/ is the link for clinical trials. You can narrow your search criteria by type of cancer, open studies, etc.

    I am super platinum resistant (the 'super' is not part of medical terminology! :) ). I actually grew large amounts of cancer during the six rounds of taxol/carbo. It was awful, knowing I had poisoned myself with that toxic concoction, with no success. Doxil didn't work for me either (although I know it has been very helpful for other platinum resistant women). I can understand how you feel, because I was certain it was the "end" after that. Thankfully, my husband was researching all the while, about new treatments and trials etc., and I found a clinical trial that was a good fit for me and my medical circumstances. I have now been free of any treamtent for over a year, with no signs of disease. There is hope.

    You do have to conduct some of the research yourself though, to find the right 'fit' for you and your particular disease.

    Good luck!

    @surviving with ovca.
    Hi mum is the same as you, it grew while she was having her chemo, could you tell me what trial you did , I would love to know.
    @ disneynutt, I tried to find the web addresses of the women who had posted their stories, but with no success, there was defiantly 2 different stories, of women who had achieved remission. Sorry I can't find it so you can read it for yourself x
    Just looked at your profile surviving ovca! It was ovax, did you have to be cancer free to get into the trial?
  • survivingovca
    survivingovca Member Posts: 23
    #13
    Mum2bellaandwilliam said:

    @surviving with ovca.
    Hi mum is the same as you, it grew while she was having her chemo, could you tell me what trial you did , I would love to know.
    @ disneynutt, I tried to find the web addresses of the women who had posted their stories, but with no success, there was defiantly 2 different stories, of women who had achieved remission. Sorry I can't find it so you can read it for yourself x
    Just looked at your profile surviving ovca! It was ovax, did you have to be cancer free to get into the trial?

    ovax
    Hi Mum2bellaandwilliam

    Sorry about your mom. I know how disheartening it is to have chemo totally 'fail' like that :(

    For the Ovax trial, you need to have operable disease. They did a second debulking surgery on me. You need enough tumor tissue available for them to create a vaccine from your own cancerous tumors. The idea was to get my immune system to recognize my cancer - and attack it. It has done the job so far! I have had no new cancer growth since the vaccine.
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #14
    survivingovca said:

    ovax
    Hi Mum2bellaandwilliam

    Sorry about your mom. I know how disheartening it is to have chemo totally 'fail' like that :(

    For the Ovax trial, you need to have operable disease. They did a second debulking surgery on me. You need enough tumor tissue available for them to create a vaccine from your own cancerous tumors. The idea was to get my immune system to recognize my cancer - and attack it. It has done the job so far! I have had no new cancer growth since the vaccine.

    That is fabulous news for
    That is fabulous news for you, I have googled the trial and I saw that it is only available in America!!! I have said it before you are lucky to be in the sates there are so many trials etc over there .I will keep researching this , I have to know I have explored every avenue for my mum, I couldn't live with myself if I didn't.
    Keep attacking those cells immune system !
  • survivingovca
    survivingovca Member Posts: 23
    #15
    Mum2bellaandwilliam said:

    That is fabulous news for
    That is fabulous news for you, I have googled the trial and I saw that it is only available in America!!! I have said it before you are lucky to be in the sates there are so many trials etc over there .I will keep researching this , I have to know I have explored every avenue for my mum, I couldn't live with myself if I didn't.
    Keep attacking those cells immune system !

    They actually sent the
    They actually sent the tumors to France, where the vaccine was created. Sure - my tumors get to go to France, but I don't? :)
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #16
    survivingovca said:

    They actually sent the
    They actually sent the tumors to France, where the vaccine was created. Sure - my tumors get to go to France, but I don't? :)

    Lol!!! Sorry I had to
    Lol!!! Sorry I had to laugh!! You brought a smile to my face!!!!
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #17
    survivingovca said:

    They actually sent the
    They actually sent the tumors to France, where the vaccine was created. Sure - my tumors get to go to France, but I don't? :)

    Lol!!! Sorry I had to
    Lol!!! Sorry I had to laugh!! You brought a smile to my face!!!!
  • kayandok
    kayandok Member Posts: 1,202 Member
    #18
    Hi Kate,
    I am border line plantinum resistant. It worked for me the first time, although I only had an 8 month remission. All docs I consulted with looked at my data and said I was border line. So, right now carbo is working for me again (with taxol) but it will probably be short lived.

    I have a couple friends on other boards that have the same cancer (serous type stage 3C) as I do but are grade 1 for the tumor type, and very resistant to any kind of chemo. One gal has surigiacally managed hers and been alive now for 12 years. There are doctors that will do this for you, but not only are few up to the task, it is a very time consuming difficutl surgery and not all doctors want to go that route. If you PM me I can give you more info on this.

    kathleen
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #19
    survivingovca said:

    http://clinicaltrials.gov/
    http://clinicaltrials.gov/ is the link for clinical trials. You can narrow your search criteria by type of cancer, open studies, etc.

    I am super platinum resistant (the 'super' is not part of medical terminology! :) ). I actually grew large amounts of cancer during the six rounds of taxol/carbo. It was awful, knowing I had poisoned myself with that toxic concoction, with no success. Doxil didn't work for me either (although I know it has been very helpful for other platinum resistant women). I can understand how you feel, because I was certain it was the "end" after that. Thankfully, my husband was researching all the while, about new treatments and trials etc., and I found a clinical trial that was a good fit for me and my medical circumstances. I have now been free of any treamtent for over a year, with no signs of disease. There is hope.

    You do have to conduct some of the research yourself though, to find the right 'fit' for you and your particular disease.

    Good luck!

    Thanks so much
    Thanks so much "survivingovca" for your comments. You really helped me since I too feel it is the "end" for me after less than 2 years after dx. I will check out this web site for sure. I am going to be going on doxil and I am trying to be positive that it'll work for me. I'm very, very happy for you and your success. You must be flying high still. I hope we are all that lucky.

    Thanks again for posting.

    -Kate
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #20
    survivingovca said:

    They actually sent the
    They actually sent the tumors to France, where the vaccine was created. Sure - my tumors get to go to France, but I don't? :)

    Wow, I'd like to get into
    Wow, I'd like to get into that study. Sounds good.
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #21
    survivingovca said:

    They actually sent the
    They actually sent the tumors to France, where the vaccine was created. Sure - my tumors get to go to France, but I don't? :)

    Wow, I'd like to get into
    Wow, I'd like to get into that study. Sounds good.

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