Third Time Survivor - Advanced Stage IV Ovarian Cancer

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jsayler
jsayler Member Posts: 4
in Ovarian Cancer #1
Since 2003 , I have been going through this up and down rollercoaster of being "chronic." Last time I had Carbo/Gemzar on a 2 week on 1 week off for OVER a year--until I had a reaction to the Carboplatin. That was in 2007. When I regressed this time, I chose a super-experimental chemo pill because after all the expenses of my first two battles with the beast we were fiancially devastated-even though we have a "Cadllac" Plan. No plans cover the deductibles, co-pays, premiums and excessive prescription costs.

I did well on the program: first starting out at a CA-125 of 22,000 (Sept 2010) and by November, I was down to the mid 3,000. By Christmas, I felt great but the reason I felt great was because (I believe) that I was put on a placebo. They all swear that I was doing so well that they would never do that to me but there was no denying how I felt, I just knew and the numbers proved it. My CA-125 had jumped up to 9,888 (and I was doing great?).

They told me I could quit the program at any time but when I decided to do just that , the doctor bout had a cow...there was nearly a shouting match. He told me that maybe I should get a referral to another doctor and I said that if that was what he was comfortable with, fine. I told him that I liked him just fine but I needed him to know that after so much experience, that I was going to be in charge of my treatment.

I decided that even though I had had a bad reaction to Carboplatin after a year's use of it, that enough time had gone by that I was willing to try it again. Last week I had a pretty bad reaction and it looks like I'll have to give up Carbo for "life" (whatever that means).

I have already done the Taxol abuse and really don't plan to go back there. I am wondering what other choses are out there for me. I want to stick with the weekily plan with the Gemzar because I DO believe that Gemzar is a much under-rated drug.

My Dr keeps pushing stuff like Doxil and the like and I can't help believing that they are really no different than Taxol and therefore don't meet my criteria. I know I sound fusy but I KOW what works for me and what doesn't and I really don't see any need to punish my body more than necessary. My CA-125 is down below 1,000 now and I want to take it slow and easy. I want to live while I'm receiving treatment; not like some of the treatments that make you feel like you made the wrong coice to live or to even try.

What works with Gemzar as a replacement for CarboPlatin?

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  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #2
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    Welcome to the boards jsayler
    Wow what a story ...... I admire your resiliance :) You have such a fantastic attitude that in itself should fight the cancer :)

    I have stage IV PPC and have had it for 16 months. I have just finished my second round of carbo/taxol and I am feeling well. I have the same attitude as you and I surely hope I can tolerate all of the treatments as well as you if I need to have them.

    In regard to your question I'm afraid I don't know the answer to it but it was really nice to meet you. Good luck with your treatment and keep in touch as I'd really like to know how you get on.

    Tina xx
  • kikz
    kikz Member Posts: 1,345 Member
    #3
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    Tina Brown said:

    Welcome to the boards jsayler
    Wow what a story ...... I admire your resiliance :) You have such a fantastic attitude that in itself should fight the cancer :)

    I have stage IV PPC and have had it for 16 months. I have just finished my second round of carbo/taxol and I am feeling well. I have the same attitude as you and I surely hope I can tolerate all of the treatments as well as you if I need to have them.

    In regard to your question I'm afraid I don't know the answer to it but it was really nice to meet you. Good luck with your treatment and keep in touch as I'd really like to know how you get on.

    Tina xx

    You really are a fighter
    and I commend you on your tenacity in knowing what is right for you even if it means going against what a doctor tells you. I had taxol/carbo prior to surgery and taxol/cisplatin after surgery. It worked for me. I don't have knowledge of other drugs. I am sure you will hear from many other women on this board who can answer your question. Welcome to the club nobody wants to join. This is a great place to find support, gain knowledge and just let your hair down when you need to. That is when we have hair.

    Karen
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
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    I've only had personal
    I've only had personal experience with Carbo and Taxol but I can say with absolute certainty that no doctor would give you a placebo while you were suffering a recurrence. In a clinical trial you either get the trial drug, or you get the standard treatment. You never get just a placebo, if you have active disease. It would be completely unethical (and probably illegal) for a doctor to do that.

    Carlene
  • antcat
    antcat Member Posts: 270
    #5
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    Different Chemos
    I also am considered chronic (I think), although no doc has told me that. My OC keeps coming back. In the beginning I took everything the docs said but now I am more involved in my treatment, as it should be. I went the Carbo/Taxotere route the 1st 2 times and when it came back again, I went the Gemzar/Carbo route. Unfortunately, I had a reaction to the Carbo and couldn't continue it. I then went on Doxil, with no good results. Then tried Avastin/Cytoxan, again only 1 tumor shrunk and now am on Avastin/Topotecan. I've been reading on this website that quite a few people are on Topotecan. I don't know what the results will be, but I'm trying it. It can get very discouraging trying 1 drug after another and I am always searching clinical trials. I didn't think they gave a placebo in a clinical trial for people with cancer. That doesn't seem right. Anyway, you might want to search out Topotecan, from what I understand from my doc, that is a drug that is approved by the FDA for ovarian cancer. I don't know what the Avastin does, if anything. But good luck anyway.
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #6
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    Hissy_Fitz said:

    I've only had personal
    I've only had personal experience with Carbo and Taxol but I can say with absolute certainty that no doctor would give you a placebo while you were suffering a recurrence. In a clinical trial you either get the trial drug, or you get the standard treatment. You never get just a placebo, if you have active disease. It would be completely unethical (and probably illegal) for a doctor to do that.

    Carlene

    I agree with Carlene
    What Carlene said is the truth. There are no trials for ovarian cancer that use placebo therapy alone--maybe you were given standard of care chemo + placebo which is not the same as being given a "placebo for treatment." Just wanted to clear that up.
  • msfanciful
    msfanciful Member Posts: 559
    #7
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    Hi Jsayler,
    I hadn't been on
    Hi Jsayler,

    I hadn't been on the boards in a while and while checking in I could'nt help but read your fight.

    I've been on 4 types of chemotherapy in just as many years. I am living with stage iv ovarian cancer and my most recent treatment was a 12-week weekly taxol maintenance; which has since kept me into remission currently for 7 months now. (The best I've gone in a long time).

    I've been on doxil (red-devil), the avastin study, etopocide, carbo-platin/taxol (initially) and the most recent, weekly taxol.

    I agree with you about being in control of your treatment plan to a degree. For me when my doctor and I were faced with the dilema that my ca-125 was rising again and the scan concurred that the cancer was back, we both sat in silence and tried to figure out the best plan of attack. I then made the suggestion to her that maybe we can try the carbo/taxol treatment again because initially the combo put me into remission for one-year and one month. She, (my doctor) pondered this and said "I like the idea of the taxol alone maybe" but not with the carbo." "We'll try the taxol?" and I said "okay it's worth a try."

    I guess my point is, although we don't agree with what our doctors say the majority of the time, I do like the idea that if we must, at least we can communicate and come to some mutual resolution. It is my life after all.

    I hope you do not have to continue to argue with your doctor, this disturbs me a bit, because this form of stress will not help you to heal for sure.

    But whatever you do, stay true to you first and foremost and you'll know when you've made the right decision because you will feel at peace not at conflict.

    I hope the best for you,

    Sharon

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