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).
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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@Fearless - Vol Mod. I will share it. It is very personal and I made the decision to go all in. On a personal note, I have known the journalist for 40 years. The most powerful part was when she said to me, she had given instructions that if she every got cancer she wanted absolutely no chemo. She had seen what it had done to people over the years. After seeing and talking to me she is changing her directive. I had goosebumps. It is a good day.
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@taita you're lucky to have them in your corner and so available to help. And yes, as caregivers they qualify for eligibility for the vaccine. Some don't know that. When KGH did my second shot, they asked if my husband wanted to come in for his first but he'd already had it so we were fine. But it's nice that the importance of what they do for us is recognized. A move? Are you staying locally or moving somewhere distant? Whatever, good luck with your treatment on Monday. Had my second session of Cycle 6 yesterday. It's just a half hour dose of Gemcitibine, the second half of what i get and it was fine. Plus it doesn't usually cause any side effects thankfully. Find out on the 18th when I get my scan report whether or not I'm done or going for cycle 7 in two weeks. I suspect at least another cycle since they've already ordered all the premeds I have to take to tolerate the Cisplatin. I'm ok with more...rather that than not enough....so keep it coming !!!0
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@taita, that's amazing. Part of my profession consisted of a lot of communications work so it was a natural for me a couple of years ago to do a fair bit of media out here on behalf of the cause. Local TV, radio spots and some print.
And like you, very open and honest. I've always been one not to hide anything anyway so that was the easy part. But what a wonderful success to have your interviewer rethinking her position on chemo. Clearly you have exceptional influencing skills. Congratulations.0 -
@Fearless - Vol Mod I am on Caylex and doing fine. I feel like it is working, but it may just me my overly optimistic disposition, but whatever, I will take it! My scan is at PMH on May 31. Crossing my fingers!
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@taita one of my teal sisters out here who's become a close friend has been on Caelyx awhile now. She said it's slower to show it's impacting than the Carboplatin she'd been on originally five years ago, but told me it's now showing so really positive response both in her CA's and her most recent scan. I think she's been on it for about 4 months but have to admit she did a stop/start a couple of times so probably received the equivalent of 2 months worth. I'll keep my fingers crossed for you and hope you see some good progress. Slow and steady is just as good as anything.
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Good afternoon ladies... sorry I am late. Went out to weed garden and time slipped away this sunny day.
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Joining late! Hi Ladies0
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@Taita Wonderul you shared your journey with cancer. I too was asked to have my story told and it was a video story. Was not sure if i wanted it public as it is very personal. But I think it is good for all to know how strong we are.
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@Sylviequebecbc
@CountryLiving
Glad to have you join in. Better late than never, eh. We've just been having a nice chat. Gaylestorm was on for awhile and Taita and I have been holding the fort. She had a lovely success turning someone's perspective about chemo as a treatment for cancer around.0 -
Is anyone zooming in to the symposium on Saturday?1
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A friend asked me if I would accept to have chemo next time offered, I am debating it0
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@Fearless - Vol Mod I plan to, I registered0
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Hi All, wasn't able to join in today, I'll be reading these posts to learn how everyone is doing.
No news on my end, like everyone else, just taking it one day at a time. Slow march to seeing covid levels go down.
Hope everyone has a good Mother's day...chat next week.0 -
Yes I did read that. Wonderful. I do feel it is a personal decision whether to do chemo or not. A friend is having a recurrence and she has chosen no treatment as the first was sooo bad. Hard to see that but I do understand.0
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Have a wonderful weekend everyone! And happy Mothers day to all0
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@Taita best of luck for may 31st, my thoughts are with you1
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Happy Mother's Day everyone!1
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@CountryLiving
I see Dr. Leroux. Love her!0 -
Alright.. I seee Dr.May
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I am part of the Bio Diva study too. I will know the results of that on the 31st as well.0
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So gals, it's that time once again.
Thanks to all for joining today, even if only for a few minutes. Good luck to everyone in treatment or with scans upcoming.
And yes, how we deal with cancer and treatment are very personal. That's why I love promoting all the information on the OCC site. It's vetted for accuracy and enables someone to make informed decisions, whatever that might mean for them.
To all the mothers out there....Happy Mother's Day.
Until next week ladies.....
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@tatia the only check I get from my Dr. is my CA125. How did you know you had a recurrence?0
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@CountryLiving
I had a good check in early December, my CA125 rose a bit but still under 35. New Years Eve is when I felt something was off. I felt that my bra was tight and I was bloated. ( I had three drains of my ascites which I carried high (7l), 8l) and the day of surgery 10litres). I know ascites and for me it was worse than surgery or chemo so I was very attuned to it I guess. I was on Zejula since October 2020 and had no issues except early January, all of a sudden my hemoglobin dropped to 61 and I had to have a transfusion. I stopped taking the Zejula till we could address it. A week later it was up to 71 so we thought on the right road and that maybe my symptoms were part of the hemoglobin. The next week I got out of bed and couldn't stand up. Called the nurse, went right in and hemoglobin was back down to 61 and 2 units that time. Had my scan booked for third week of January and it showed 6.5cm tumour and other smaller ones, etc... I didn't get my six months - platinum resistant. It never really went away and is now very aggressive. They thought I might qualify for one trial but I didn't have enough receptors on my tumour sample. The other trial that I fit required me to take Avastin and because the large tumour is so close to my bowel it isn't a good idea as one of the rare side effects is bowel perforation. So, hopefully the Bio Diva shows some markers that could provide targeted therapy. In the meantime I am on the standard of care Cayelx which I am tolerating well. So this is a very long answer to say, it was my body that told me something was wrong because my CA-125 was really not rising much. If I hadn't had the symptoms they would not have done the scan. Hope that helps.0 -
Hi ladies, sorry I haven't been the last 2 weeks, something always comes up when it's time to join.I do read all the comments after,all the best to everyone in treatment right now and a wonderful and blessed Mother's Day to all.0
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Good Afternoon on May 13....another Thursday unfolds with another live chat. And, here where I am in SE Ontario, an absolutely gorgeous day again. So weird, we've been having he usual rain that's expected. Interspersed with nice sunny days and milder temps, and then all of a sudden the other day a 10 minute hail storm...go figure! But it does confirm not to plant before the 24th. You never know what to expect.
I enjoyed the Symposium the other day, at the least the parts I participated in. Still a bit off from chemo so much of the afternoon was spent napping. But the videos are now posted on OCC so if you missed anything, want to revisit anything or weren't able to attend it's all there to explore at your leisure. Who else attended? What are your thoughts....valuable, what did you enjoy the most, what could they do differently or keep the same, any new topics to suggest for future? And if you missed the survey at the end, here's the link. OCC would appreciate you completing it if you didn't on Saturday. https://www.surveymonkey.com/r/R7B97RM
Now a word of advice since it's fiddlehead season. Regardless of how well you clean them beforehand it doesn't take much to be violently ill, as was my husband all last night. OMG, is all I can say. Fortunately I didn't have much appetite last night for once so only munched on a couple so I'm ok...symptoms just hit me very mild. But we're sure that's the cause. Sheesh, just what we need on top of cancer, and Covid. But at least it was an opportunity to pay Wayne back for all the caregiving he's sent my way the past few years. Don't think either of us will ever think of fiddleheads the same way again though.
So lovely ladies, it's 1pm and time to get rolling.......who wants to say hello first?0 -
Good Morning from sunny vancouver. We have gone from hot weather to needing coats, all in one week. Mothers day/birthday I was able to have my children and grandchildren over for a outside socailly distant afternoon. First one since covid! Such a shame that my two oldest grandchildren, who are both 3 and were super good friends cant play more often. Soon!
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@gaylestorm yes, my bestie out in Vancouver was telling me you've been like us...one day wonderful, the next like winter again. It sure is unpredictable. So happy to hear you were able to enjoy the company of family on Mother's Day....and your birthday....congratulations and happy birthday!0
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Hello from the East Coast! A much awaited sunny day today - haven't been out yet, but it looks splendid!
I attended the symposium on the weekend - or most of it. I thought it was very well done again. I was encouraged to hear at last some updates on research and potential upcoming trials for the less common OC types.2
