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).
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@Fearless - Vol Mod. thank you for the mouth sore solutions. And thanks for the reminder to sign up for the symposium this weekend. I signed up for the makeover and found out they send out samples. Thats amazing!0
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@gaylestorm You gals in BC are always ahead of the curve compared to us in Ontario LOL.
@gaylestorm @Tinazzie @Readersmaven @ToughAsTeal
Time again to say so long for now. I do hope to "see" you all at the Symposium this weekend. Perhaps next week we can compare notes on what we learned. In the meantime, good luck to everyone with coming tests and treatments. So glad we're all able to share our experiences so freely especially during times that do have more emotional impact on us than usual.
Big hugs to everyone for a good week ahead...
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Hi ladies, just want to say that I got a letter from my oncology team that I qualify for the 3rd covid vaccine and I am not even in treatment right now and I live in Brampton Ontario. Great weekend and all the best to everyone1
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A pre-Thursday hello as I cant join in tommorow. First I want to acknowledge this Remembrance Day, thanking anyone who has served, has family and friends who served or currently in our Armed Forces.
My CA125 went up again. Poop. I have my second round of caelyx and avastin on Friday. Still counting on it to kick some tumour butts. Hope you have all had a kick butt week as well.0 -
@ToughAsTeal - I'm with you in acknowledging our Armed Forces and those who've served and payed so dearly. Remembrance day is sacred and shouldn't be ignored or diminished in any way.
So sorry to hear about the CA 125 and here's hoping those butts will be kicked!!!0 -
Good afternoon ladies. Unfortunately our amazing moderator, @Fearless, has hit a nasty snag and is currently being treated in the hospital. She's hoping to be released soon and will most likely be back next week. Please join me in wishing her a speedy recovery along with everyone else going through treatment at this time.During the past year I have found this site to be a source of inspiration. Hearing of people's struggles, the diagnosis and prognosis and overall mental anguish in navigating treatment of this disease is heart rendering but still the humanity, sense of humor and grace shines through. I feel thankful that I've had this support during my journey.3
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@Annie1950 Thinking of @Fearless - Vol Mod and hoping she has a speedy recovery! This site has been a source of inspiration for many women and I'm so glad this site is available for us teal sisters to get the support we need.0
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@toughasnails - I've heard from others that CA125 can taek 2 or 3 cycles to come down from Caelyx and Avastin
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@jiselle16 I feel a sense of community here and the support needed for our journeys is helped along by our teal sisters. How have you been?
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@toughasteal - sorry I got your handle wrong, I do apologize. I go for my 2nd Avastin treatment on Monday and my next Caelyx is on Nov 29.0
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@Annie1950 I am doing well! I have to admit this is my first Teal Thursday chat, although I have been using this site since it launched.0
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@BeamBlossom I'm curious as to the criteria necessary to receive parp inhibitors in Canada. I'm stage 3C Serous and have been disease free for over a year. Needless to say I would like to extend that as long as possible but I'm being told it's not available to me unless I'm stage 4.
Does anyone have any information on this?0 -
@Annie1950 - I've not heard that you have to be stage 4 to qualify for a PARP. You do have to have been treated with a Carbo chemo within 8 weeks of starting a PARPi. It does work best for BRCA 1 & 2 patients, but some BRCA negative patients are having luck with them too. For the BRCA negatives, its a gamble as to whether or not it will be effective.
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@BeamBlossom Thank-you, that helps clear things up. I'm BRCA negative and in which case it probably wouldn't help. My oncology team is wonderful but by the time I finish processing what they have to say and then formulate a question regarding my care they're gone.0
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@Annie1950 - if you are able to stay cancer free and medication free, you are in the best spot, there are a lot of unpleasant side effects to the PARPs. I do know a gal going into year 9 post dx who is HGSC stage 3 BRCA -ve, she has had good luck with Lynparza0
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I think it's a common problem for patients during this pandemic. Not being able to bring a family member or friend along to help with any questions that need to be asked is soon to be a thing of the past hopefully. I went with a friend for her cancer checkup to a small community hospital in the Niagara region and her normally inquisitive personality was overwhelmed with the information she was receiving. I'm so glad that I helped somewhat with questions we had talked about on the drive there.0
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@BeamBlossom You're probably right. The medications used have many side effects and if we can keep the cancer at bay naturally that's probably the best thing.1
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Thanks @Annie1950, it's been over 5 years since diagnosis so some of this seems so long ago, yet only seems like yesterday. If that makes any sense.0
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@jiselle16 - 5 years! that is remarkable! good for you! Have you had recurrences to treat during that time?2
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@jiselle16 It sure does. Once you have the diagnosis it never entirely leaves you:( It can be a dark cloud if we let it. I go to Princess Margaret for treatment and am always amazed by the cheeriness of the staff and patients. Only once did I run in to a nurse who admonished me for complaining about my weight gain, thanks to my friend Dexi, and saying that I should have more important things to worry about. I asked her if it would bother her and if so why should I be any different.2
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@jiselle16 - love that answer to that nurse, so very true!1
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@annie Thank you for taking over for our @Fearless - Vol Mod today. Sending many positive thoughts fearless way I hoping she receives all the special care she deserves0
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@gaylestorm how are you? I was so impressed by your paintings that you showed on line a few months back.0
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I am had 3 cycles of caelyx and after the first both my ca125 went up. first by quite a bit and second one just a bit. I get tested next week and that will determine weather i'm taking off chemo. This roller coaster causes alot of anxiety waitng to find out.0
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I wish I had a quarter of the knowledge that our mother hen, @Fearless - Vol Mod, has. Her communication skills, knowledge and guidance are invaluable. Here's hoping she has a speedy recovery.2
