Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. 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 Community Champion. 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).
The new OVdialogue experience is only days away! Here’s what the updated platform will offer you as a valued member of our peer-to-peer community:
• A personalized experience, just for you: your member homepage displays the content you engage with most, including a resource library where you can engage in discussions directly related to the content.
• Have conversations in real time: You can respond to notifications and personal messages from people in your community directly from your email inbox; plus it’s easier than ever to return to the platform.
• Stay up to date on the latest events: upcoming activities will be listed in an events calendar right here in the platform
During this time of transition, private messaging within the platform will be unavailable beginning January 22, and posting will be unavailable beginning January 27.
We look forward to seeing you in the refreshed platform!
• A personalized experience, just for you: your member homepage displays the content you engage with most, including a resource library where you can engage in discussions directly related to the content.
• Have conversations in real time: You can respond to notifications and personal messages from people in your community directly from your email inbox; plus it’s easier than ever to return to the platform.
• Stay up to date on the latest events: upcoming activities will be listed in an events calendar right here in the platform
During this time of transition, private messaging within the platform will be unavailable beginning January 22, and posting will be unavailable beginning January 27.
We look forward to seeing you in the refreshed platform!
Soni
Hello everyone. I am glad to know about this site. I was diagnosed with stage 3 in June 2014. At that time , I had radical surgery including a partial bowel resection and then 18 sessions of chemo with Paclitaxel. I went into remission until 2018 when I had a recurrence . At that time I had 2 sessions of Cisplatin which made me quite ill. with vomiting and chaotic thoughts,no appetite, no sleep, even speaking in a language I didn't know. At the 3rd session, which was to be a long, desensitizing session, only 30 mls of IV was infused before I had a severe reaction and the treatment was stopped. I developed red, swollen and painful joints all over my body and could not walk or move without extreme pain. I ended up in hospital for 2 weeks. At that time I wrote in my journal that I would never submit to chemo again.
Yesterday I had my oncology appointment and learned that my Ca125 has gone up for the 3rd time and my doc says we should consider more chemo. Since I seem to be so drug sensitive, he says we should try Caelyx. When I looked up that drug, some of the side effects were horrendous. Stated that skin on palms and soles of feet could get red, blistered , swollen and painful, so much so, that a person may not be able to walk or use hands to hold a phone or hairbrush. I am scared . I want to keep some quality in my life and should such a severe reaction occur, I wonder IF it is reversible when treatment has been discontinued or if , as a widow living on my own, would I end up in a care facility? If anyone has experience with Caelyx, I would appreciate your comments. Thankyou.
Yesterday I had my oncology appointment and learned that my Ca125 has gone up for the 3rd time and my doc says we should consider more chemo. Since I seem to be so drug sensitive, he says we should try Caelyx. When I looked up that drug, some of the side effects were horrendous. Stated that skin on palms and soles of feet could get red, blistered , swollen and painful, so much so, that a person may not be able to walk or use hands to hold a phone or hairbrush. I am scared . I want to keep some quality in my life and should such a severe reaction occur, I wonder IF it is reversible when treatment has been discontinued or if , as a widow living on my own, would I end up in a care facility? If anyone has experience with Caelyx, I would appreciate your comments. Thankyou.
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Comments
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Hello again @Soni - yes, you have been through a lot when you are dealing with the adverse reactions - so sorry to hear that it just doesn't make this whole process any easier. And yes, those side effects can seem so daunting. The good part of that is the DR and medical team know you have these sensitivities so they will be monitoring you and watching for all of that. Have you expressed your concerns to them about this drug and the possible outcomes; a treatment / care plan for all considerations? Sometimes a discussion with a nurse practitioner or another member of the care team may prove comforting.
Again, I am hoping someone who has had the Caelyx treatment can post about their experiences.0 -
Hi, I have had one Caelyx treatment and so far, just tiredness. Skin is fine. The hand foot syndrome does not strike everyone. I have another treatment in a couple of days and will post experience after a couple of weeks. I am 3C with persistence of disease.0
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I appreciate your feedback on the Caelyx treatment JanCan. I know not all women suffer side effects but with my history of suffering almost every side effect listed, I am worried. Looking to your post after your next treatment. Wishing you good luck.1
