Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
How much time did Taxol/Avastin buy you so far?
I was inoperable and am platinum resistant. I have none of the gene defects that would be approved for a parp inhibitor. I was told the disease would likely end my life within months (which I totally reject as my prognosis). Now I'm on the weekly Taxol and starting Avastin next week every 2 weeks added to the Taxol. I am feeling better - less bulky and not as uncomfortable. I am wondering if some of you have made it through YEARS on this protocol? I don't want to ask any doctors anything about my timeline anymore. I would rather hear from survivors to give me some hope. Thanks.
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@BellaDonna1959 you ask a very difficult and sensitive question so you may not get many replies. Many of our members are just not comfortable sharing prognosis information. Others are concerned about creating false hope given response to treatment is such an individual thing.
What I can tell you is that your doctors will do everything available to extend your life. If your doctor didn't think the treatment protocol they are suggesting has that possibility they wouldn't recommend it. And always remember that when they give you estimates of time it's always using median data, meaning the timeline is an average of the shortest and longest that has ocurred. I was given 4 months to a year and here I am in my sixth year of treatment; this most recent with Caelyx and Avastin since November. I have two friends for whom the Avastin stopped working; one after 6 months with it and the other after year + on it. Both are feeling fine, look great and both cancers, while progressing again are progressing very slowly allowing some time to rest from chemo and explore other treatment options. But I have to admit that I have friends for whom the Avastin had no effect or it's efficacy became challenged very quickly. But Avastin may well not be the end of possibilities. There could be other treatments to try if or when Avastin or your current treatment fails. I"ve been very lucky as have a number of the gals in our community to have something else to try or qualify for one of many clinical trials out there these days.
My best advice is just to try to live each day to the fullest you can. I know it's hard, but imagine how much you're losing on it with a focus on the negative constantly. That emotional state can hold you back from experiencing so much that you are still able to experience. If you're struggling with your perspective I can sure suggest getting help from one of the soclal workers at your cancer centre. I know I did three years ago and my buddy...as I call her...has been enormously helpful keeping me balanced, especially through the really bad times. And, of course, continue to use our community here, join us in one of Teal Thursdays where we do a weekly live online chat, or Zoom in to one the Teal Teas. Unburdening yourself of some of your fears to a group who "get it" can be enormously helpful too.
Wish you were here so I could give you a huge hug. I feel you need that right now. So I'm sending a virtual hug to you right now.
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Thanks for your info and reply, Fearless, always appreciated. And thanks for the hug. I am actually searching for positives, hope, and rejecting the negative outlook from the oncologist so I am not particularly feeling fear and feeling negative right now - quite the opposite, which I know you will be happy to hear. I'm supplementing, exercising, healthy diet, off-label drugs, researching new treatments - doing everything I can to do my part to survive this way longer than they think. I asked for positives precisely to fill my head with good news and survival stories. I have ups and downs, like anyone, but I am enjoying swimming with my grandkids, eating good, delicious healthy meals and getting out and about with family and friends as much as I can. I mentioned the back story only because new members don't know my story and also because others may relate, who like you, have 'outlived their dates'. I love hearing stories like that! Summer is my fave season and I am definitely doing everything I can do enjoy each day. If anyone feels willing to post good news stories, please do. One day, I will share mine. I truly feel this is an 'against all odds' situation and I've had rotten luck on this journey, but luckily for me, I don't give up! I also think that if members do not want to share, I totally understand. I don't know what will happen next, but every time I read a survival against the odds stories, it lifts me up. Thanks again - you offer a lot of comfort to our members and it is priceless. It's a safe space to share the highs and lows. While I've had to digest a LOT of discouraging news lately, I always bounce back. I am very happy for your survival and your friends' good news. I think there will be something else to treat me down the road for sure. My only fear in all honesty isn't death, but missing out on all the times I wanted to have with my family - so I'm determined to have as many wonderful times as I can.
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