Is there anyone else like me?

Davita
Davita Member Posts: 4
edited March 2014 in Ovarian Cancer #1
I am an 11 year, 10 month ovarian cancer survivor. I have had no reoccurances at all.
Is there anyone else out there like me.
I had a grade 2 tumor and was in stage 3c. I went through 6 rounds of Carbo/Taxol then 5 of Topotecan.
I am now having some other health issues and was wondering if they are caused by the chemo.

Comments

  • jamilou
    jamilou Member Posts: 200
    #2
    Welcome
    Congratulations on your long survival! In the search box write "Looking for Stage II Ovarian Cancer Survivors". There is a thread with many responses from other long term survivors. You don't say what type of problems you may be having but have you spoken to your oncologist about your other health issues? Hope you find answers and again congratulations on your survival.
    Jami
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #3
    That is fantastic that you
    That is fantastic that you have survived over 11 years. It gives us all inspiration. xxxx
  • dorion
    dorion Member Posts: 183
    #4
    R U kidding???
    you've had 5 rounds of this???? Why is it on Tuesday after only 2 rounds for me they are telling me that it is useless to go through the carbo/taxol cos I am showing "signs of some progression". He told me that there is no use to do any more of this because the cancer won't react any more to the carbo/taxol. I too am staget 3 and 2 years into it. I sure wish I was was like you. I've been laying her the past 2 weeks or so, sleeping and scared shitless cos of the prognosis that's been handed to me of 3 to 3 and half years and now I've gone through 2 of those years even though I know it's just a number and everyone is different. Did they offer you a prognoiss when first diagnosed? You've given me no hope. I am about post a topic to ask for advise about what the doc told me. I wish I could answer your questions but I was more God smacked by the fact of 5 rounds of chemo!! Keep up what ever it is you are doing, it seems to be working!!!

    Linda
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #5
    dorion said:

    R U kidding???
    you've had 5 rounds of this???? Why is it on Tuesday after only 2 rounds for me they are telling me that it is useless to go through the carbo/taxol cos I am showing "signs of some progression". He told me that there is no use to do any more of this because the cancer won't react any more to the carbo/taxol. I too am staget 3 and 2 years into it. I sure wish I was was like you. I've been laying her the past 2 weeks or so, sleeping and scared shitless cos of the prognosis that's been handed to me of 3 to 3 and half years and now I've gone through 2 of those years even though I know it's just a number and everyone is different. Did they offer you a prognoiss when first diagnosed? You've given me no hope. I am about post a topic to ask for advise about what the doc told me. I wish I could answer your questions but I was more God smacked by the fact of 5 rounds of chemo!! Keep up what ever it is you are doing, it seems to be working!!!

    Linda

    Hello Dorion
    I am so sorry to hear your news. Please don't lie alone being frightened. No one knows what may happen "tomorrow" and you may be offered a completely drug that responds to your illness. I send you many blessings and really hope you can find the strength to enjoy each day you have. Love Tina x
  • saundra
    saundra Member Posts: 1,370 Member
    #6
    dorion said:

    R U kidding???
    you've had 5 rounds of this???? Why is it on Tuesday after only 2 rounds for me they are telling me that it is useless to go through the carbo/taxol cos I am showing "signs of some progression". He told me that there is no use to do any more of this because the cancer won't react any more to the carbo/taxol. I too am staget 3 and 2 years into it. I sure wish I was was like you. I've been laying her the past 2 weeks or so, sleeping and scared shitless cos of the prognosis that's been handed to me of 3 to 3 and half years and now I've gone through 2 of those years even though I know it's just a number and everyone is different. Did they offer you a prognoiss when first diagnosed? You've given me no hope. I am about post a topic to ask for advise about what the doc told me. I wish I could answer your questions but I was more God smacked by the fact of 5 rounds of chemo!! Keep up what ever it is you are doing, it seems to be working!!!

    Linda

    Dorion,
    I think she means 6 doses of Taxol/Carbo altogether.... not 6 reoccurances and treatment....
    Anyway, maybe this will be cleared up..... Saundra
  • msfanciful
    msfanciful Member Posts: 559
    #7
    saundra said:

    Dorion,
    I think she means 6 doses of Taxol/Carbo altogether.... not 6 reoccurances and treatment....
    Anyway, maybe this will be cleared up..... Saundra

    Hi,
    First, an 11 year
    Hi,

    First, an 11 year ovarian cancer survivor? It does give hope. I am a stage 4 ovarian cancer survivor by almost 3 years in Feb., 2010.

    I realize, i'm really early along this journey; however, having been told how a stage 4 ovarian cancer surviving over 5 years is almost unheard of. ( I was told 3-5yrs tops).

    After being diagnosed, i was immediately given eight cycles of carbo and taxol. Right as a year passed, following a rapid rise in my ca-125 count a cat-scan followed and reflected 2 enlarged lymph nodes located in the abdominal region. After that it was recommended that we begin another round (6 cycles to be exact) of Doxil/Carbo/ and a research study drug named Avastin.

    So after tears and figuring what do i have to lose? We began the treatment. My last chemo this time was on June 2, 2009. So after the treatment my Ca-125 was 7 (prior it had jumped to a 63). It seems with every 2 month visit, my count progresses upwards about 1 point a month. Currently, my count is now at 13.

    So being that i participated in the study for avastin, i am required to have additional cat-scans along with my doctor visits. My last scan reflected that the same 2 lymph nodes are a little enlarged again. (After the last treatment, the nodes shrunk 50% but not that much more with each successive treatment). So with my ca-125 being low, i'm not stressing about it too much right now.

    My doctor, wanted to know if i wanted to spot-treat the 2 lymph nodes instead of chemo, because it now seems that new studies show that if your ca-125 is low and you're asymptomatic, that there is no rush to begin chemo until you do become symptomatic.

    Surprisingly, i told her lets wait till my next cat-scan and visit with her in January, and if there is reason to make a new decision (depending on the test results), then i will. :-)

    In the meantime, i am healthy, taking one day at a time and finding joy in everything i see and do, I hope and pray i can become a survivor for years to come.
  • msfanciful
    msfanciful Member Posts: 559
    #8
    dorion said:

    R U kidding???
    you've had 5 rounds of this???? Why is it on Tuesday after only 2 rounds for me they are telling me that it is useless to go through the carbo/taxol cos I am showing "signs of some progression". He told me that there is no use to do any more of this because the cancer won't react any more to the carbo/taxol. I too am staget 3 and 2 years into it. I sure wish I was was like you. I've been laying her the past 2 weeks or so, sleeping and scared shitless cos of the prognosis that's been handed to me of 3 to 3 and half years and now I've gone through 2 of those years even though I know it's just a number and everyone is different. Did they offer you a prognoiss when first diagnosed? You've given me no hope. I am about post a topic to ask for advise about what the doc told me. I wish I could answer your questions but I was more God smacked by the fact of 5 rounds of chemo!! Keep up what ever it is you are doing, it seems to be working!!!

    Linda

    Avastin
    Hi Dorion,

    I'm fairly new and am somewhat excited about this site, because for a while it seemed i was the only person dealing with ovarian cancer (stage 4).

    On this site I wrote about the research study drug called avastin (in addition to doxil/carbo). I mentioned of it because I saw your situation and hope that it could be an avenue for you to explore as well.

    I actually went through 6 cycles of this cocktail of doxil/carbo and avastin, and between each cycle would be one infusion of avastin only.

    Right now, everything seems okay, but like you i'll only reach 3 years in February, but right before this treatment, my numbers too were moving pretty quickly, however; afterwards they seemed to have slowed them down tremendously and there are no signs of any tumors. Right now i do have 2 abdominal lymph nodes that are enlarged and don't quite what to make of them.

    I think if you are able, it worth a try.

    sharon
  • dorion
    dorion Member Posts: 183
    #9
    Tina Brown said:

    That is fantastic that you
    That is fantastic that you have survived over 11 years. It gives us all inspiration. xxxx

    correction on type o and thanks
    hello ladies and thank you so much Sandra and Tina for your encouragement and kindness. I was re reading my post hear and realized I had typed "you've given me no hope" I didn't mean to type that, I must have meant to say you've given me more hope. I was up late lastngiht or this morning, I don't know these days as I have messed up sleep patterens, I finally fell asleep at 8 or 9 this morning and naturally slept all day.

    I put our tree up, Meghan and I went out yesterday and picked our tree and they delivered it, thank goodness cos I couldn't take it home any other way. So tonight I enlisted the help of my neighbor and got it in it's stand. That's a start! Xmas has always been my absolute favorite time of year, more so with my Meghan, but now it's always a marker for the ticking of the clock beings I was diagnosed December 4th, 2007. Anyway no more negativiity. We march on and no one knows what's around the corner, right? I hope you beautiful ladies have a wonderful Christmas and let's all pray for a miracle. I love you all so much. I always look forward to seeing you guys here. Why don't we have our own chat room, that would be awesome.

    Linda
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #10
    dorion said:

    correction on type o and thanks
    hello ladies and thank you so much Sandra and Tina for your encouragement and kindness. I was re reading my post hear and realized I had typed "you've given me no hope" I didn't mean to type that, I must have meant to say you've given me more hope. I was up late lastngiht or this morning, I don't know these days as I have messed up sleep patterens, I finally fell asleep at 8 or 9 this morning and naturally slept all day.

    I put our tree up, Meghan and I went out yesterday and picked our tree and they delivered it, thank goodness cos I couldn't take it home any other way. So tonight I enlisted the help of my neighbor and got it in it's stand. That's a start! Xmas has always been my absolute favorite time of year, more so with my Meghan, but now it's always a marker for the ticking of the clock beings I was diagnosed December 4th, 2007. Anyway no more negativiity. We march on and no one knows what's around the corner, right? I hope you beautiful ladies have a wonderful Christmas and let's all pray for a miracle. I love you all so much. I always look forward to seeing you guys here. Why don't we have our own chat room, that would be awesome.

    Linda

    Linda
    Linda are you a single Mom? I read in one of your previous post that your daughter is 11. I have a 4 and 6 yr old. For me, the hardest part is thinking of my kids. Really sucks! I just had a confirmed reoccurence. I've been out of chemo 8 months. I've had 5 rounds carbo/taxol and 3 rounds cisplatin/taxol. I don't know what is in store for me.

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