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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Teal Tuesdays - Live Online Chat! (Discontinued indefinitely)
Comments
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@red1976....11 times? Wow.0
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I'm heading off to bed. Wishing everyone a great week
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Best wishes sent your way @red1976
I'm off for a cup of tea and watching the thunderstorm roll in
Looking forward to meeting up with a couple of the members from our local in person support group teams this week and next
I hope you all are able to find the support you need when you need it
perhaps we sign off tonight with your best self care tip?
I've picked up a few of those face masks - they even have one with lavender - really helps to relax you0 -
Good night!0
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Best self care tip...read a book, relax with a glass of wine, have coffee with a friend, paint something, whatever feeds your soul. Cheers!😊0
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Shoot! I missed it. Well maybe next week.
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I'll check back in again before bed and then
Catch you all back here on Tuesday June 5 at 7:00 PM CST0 -
Hello everyone - hope you can join us here on Tuesday June 5 at 7:00 PM CST0
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Hello everyone - I'll be on and off the chat site throughout the evening today. I've signed up for a class so I'll be checking in mobile for a few hours. Hope everyone is having a good evening and I'll meet you back here throughout the evening.
Last week we were grateful for the fabulous weather and we talked about self care tips.
What is on your mind this evening?0 -
‘evening Teal sisters, @flowergirl, am I first in from Ontario?0
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Good evening @flowergirl and @jsullivan33 hope everyone is doing well.
The only thing I can think of the importance of connecting with others in the same boat. I am not very open with my feelings but this site and the ladies here have helped me in so many ways. Not too long ago I was a big anxious bundle of nerves, going to bed every night with the last thing I thought about was cancer. That is not the case any more, and for that I am so thankful!!!
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Good evening ladies ! How is everyone doing ?0
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I’ve been waiting for a hip replacement and got a cancellation, so my surgery is on Thursday. My right hip bones collapsed (from too long on steroids) so I can’t wait for this new hip to get my mobility back. I’ve been reading the book When Breath becomes Air written by Dr Paul Kalanithi (great book) And I’ve just finished knitting a lovely hat (toque) for my wee sister.0
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Hi again everyone
this mobile access is not great
I’ll check in with you again after class0 -
Looking for some context here. After a bit of a meltdown a couple of weeks ago with my oncologist, who informed me that my cancer had recurred 2 months after I had completed my treatment (and hence the end of my aspirations to be in a parp inhibitor drug trial) , I decided to book a subsequent appt. with the cancer clinic to go over this juncture with calmer spirits. Today I went to the clinic appt., taking with me some concrete questions to better understand what comes next. I met with the oncologist on duty. I am to expect a 2nd line treatment regimen for “platinium refractory” OvCa, i.e. Caelyx (although the Gyne -onc I spoke with felt that I would do better w another round of carbo-platinum - TBD by my principal oncologist). Have to wait until late August in order to rest my bone marrow. Anyways, he explained that although I had done exceptionally well w my first chemo/surgery/chemo, it is typical for BRCA cancers (like mine) to recur as quickly as my cancer did. Now here’s the rub: early recurrence (within 6 months) and hence “platinum resistant” means that I am not eligible for parp inhibitor maintencance therapy following 2nd line treatment, despite the fact that BRCA cancers are exceptionally responsive to parp inhibitors. It’s tempting to ask here what is the value of undertaking 2nd line treatment if recurrence will show up almost as soon as as treatment is finished, and I won’t count on on maintenance therapy. The oncologist said that I would benefit significantly from the parp-inhibitor, immediately following my next treatment, and that I must figure out how to secure this. (not very helpful...)
Does anyone know about flexibilities within the AstraZeneca’s Patient Assistance Program that Marilyn outlined in an earlier post in Lynparza topic, to accommodate my parameters? Any experience out there for platinum resistant/ BRCA?
Apologies for the long winded ramble here. Had a disquieting day. I feel like this is the place I can find some responses. best, jsullivan330 -
@Linda, so glad you are getting in early for that much waited for hip replacement. And you sound like you are in a good space already with your reading and your crafts. Wish you a great outcome in your surgery and recovery,
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Hi @jsullivan33 Thank you so much ! I’ve found great resources on this site and i’m So grateful to finally connect with others like me. I was diagnosed in 2015 and didn’t know anyone else with OC. There’s always lots of strangers when I go to the clinic at Princess Margaret in Toronto. But this site (which I only recently found) has made a world of difference for me.
im so sorry to hear of your experience @jsullivan33 it must be so frustrating. I hope one of the other ladies can answer your questions regarding the part inhibitor and the Patient Assistance Program. Best of luck !! Hugs, Linda0 -
Thanks Linda - I had read your story when you joined shortly after I also signed onto OV Dialogue, and appreciate your experience and the outlook you’ve shown in a tough journey.
I think I will post my inquiry on the Lynparza topic in the OV Dialogue, where there may be some sisters who can comment. Goodnight ladies,
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Thanks @jsullivan33 Best of luck ! Good night ladies - have a great week ☀️🌸🦋💞0
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hello again @jsullivan33, @Linda and @terrylee - yes, this is the place to be for the ongoing support.
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Hello everyone - see you back here on Tuesday June 12 at 7:00 PM CST0
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Hello ! How is everyone today ?0
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Good evening everyone - hi @Linda - how are you this evening?
Thinking of you tonight @Quiltmama!
Hope you are doing ok @CurlyHair and @midcanada0 -
I had my right hip replaced last Thursday. Came home Saturday, then started physio today. So lucky to have great Drs !0
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Wow -that was fast! yes, lucky to get that out of the way now and on to physio and healing!
Wishing you all the best with that.0 -
Thanks so much @Flowergirl how are you doing ?0
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Seems the nice weather may have everyone outside this evening.
I'm off to my class so I'll check back into the site later tonight.
Hope everyone is doing ok and post here what is most on your mind this week and we can chat.
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I'm doing ok thanks - I've been trying to get out in nature and enjoy the sunshine and the birds - really helps to focus the mind.0
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It’s so nice to connect with nature @Flowergirl I’m looking forward to getting back to my walks and listening to the birds. I have to sign off early too. Have a great week everyone!0
