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!
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I was diagnosed with serous 3C Feb 2020 had surgery in March , chemotherapy from April till October..so it has been 1 year since then1
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@CountryLiving I am so jealous. What a wonderful evening ahead and just think; once you've mastered the merengue the next step is trip down to the Caribbean to practice LOL. Regardless of what you might have forgotten in your planning...and trust me, we're all in the same boat having not prepped for a real social gathering for so long....you and your guest will have a wonderful time I'm sure. Happy Birthday gal, and congratulations reaching 18 mos NED.
@Bojenka welcome to your first outing with us. So glad you decided to check in.1 -
And you countryLiving ? Where are you in the journey?0
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@tinazzie, yes, My last round of chemo that ended early June didn't stick. Four months into my hiatus from treatment my scan showed it all back + more and much more aggressive than it's ever been. So now considered platinum resistant and no appropriate trials to consider so we're pulling out the big guns and I'll be on Caelyx + Avastin once a month and just Avastin once a month. I asked about duration and my oncologist told me that assuming I tolerate it all ok, probably a year and maybe more. I've decided not to worry about what to do if I can't tolerate it.
FYI for all, while we're online I reached out to OCC and the session from last night was taped and will be available asap on the website. I'll post the link once it's up there.0 -
Good afternoon all, can't stay long but wanted to give an update after my "unloading" last week. (:)) Good news, the breast cancer is Stage 1 and contained and will be treated with a pill which will allow me to stay on my trial. Yippee! The other very good news is that I had a CA125 test Monday. Got the results Tuesday morning when I woke up. It has gone from 178 to 58 after four treatments! The real results will show after my CT Scan in November, but wow, after it staying at 180ish for the last six months this was welcome news. Feel great and off golfing shortly. I am really interested in the Avastin comments. I too had Caelyx with no Avastin for 5 treatments because my largest tumour was adjacent to my bowel and bowel perforation is a concern. I am now taking Avastin in my trial. With the Caelyx I had a heart scan every 3 months as per protocol. Never a dull moment!
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@Bojenka - we are around the same point on our journey. I too finished my chemo last October.@CountryLiving - Your celebration sounds like a great treat! Yes, it does seem so unusual, doesn’t it, to even think of something like that? Have fun and enjoy it!!0
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@Taita, I'm doing the happy dance for you gal. Now to get on that golf course and shoot for a hole-in-one!
I've just reached out to OCC to see if Tracy or their medical consultants can help shed some light on the whole issue around Avastin, length of treatment and funding models. If they're able to answer any of our questions I''ll post or share in next week's chat.1 -
@Fearless - Vol Mod - sorry to hear your news but so glad that there is a new plan in place! And you will rock it - again I know!!0
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@Bojenka it's wonderful you're still clear after a year post treatment. I too was high grade serous 3C, as were three gals in the support group we had out here prior to Covid. We were all diagnosed around the same time, same type and stage, and same treatment. The only difference was that I had Carbo + Gemcitabine while they had Carbo + Taxel. Of the four of us, two are still NED, the third had a recurrence just after a year. She was treated again and has been NED ever since. I'm the only one with chronic recurrent OVC. Just goes to show how different we all respond to treatment. But the five of us are still alive and kicking....lots to be grateful for.
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@Taita great news for the stage 1😀 and my largest and its snivelling little friends is at my sigmoid. Risk of bowel perforation was discussed. Will keep everyone posted.
Flu shot and 3rd covid this afternoon. This is what my tumour looks like. So the caelyx knows what to look for. Have a good week everyone! Happy birthday @CountryLiving
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Well my friends, time to say goodbye again. Hope everyone gets out today and enjoys the weather if yours is anything like mine...a true comfortable, sunny fall day.
To every one in treatment may those drugs destroy every cell it's targeting.
To those waiting for test results, may they all be good news.
For those who are NED, may you stay that way
Thanks all for joining us today and 'see' you all again next week I hope.
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I have abdominal pain daily so of course I think the cancer is back. However my CA125 was 27.5 at last checkup. Next checkup not until January.0
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@Bojenka keep that journal we discussed the other day and if you can't easily tie the pain back eating patterns or something else non cancer related and it persists another month or so without let up, I'd ask my oncologist to see me earlier than January. You are going through a healing process and not all aches and pains we experience are signs of recurrence. But clearly if they are persistent over time and not getting any better or getting worse, then don't feel you have to wait to flag your cancer care team. Hopefully though, what you're experiencing will diminish over time or there is a reasonable explanation for it. Take care and keep us posted. Feeling anxious is normal for all of us. Some days I wish there was a magic pill to take that away.
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THURSDAY OCTOBER 21 AND TIME FOR ANOTHER LIVE ONLINE CHAT. I'M HERE AND HOPING TO SEE MANY OF OUR REGULARS BACK AGAIN AND ANY NEW MEMBERS JOIN IN.
To start off, a few reminders:- The Fall Symposium is open for registration. I've updated the Discussion thread on our home page with the latest agenda. There is definitely something there for every one of us. Mark November 5 & 6 on our calendars and get yourself registered.
- Teal Teas next week. If you're interested in any of the sessions you do need to pre-register. Go to https://ovariancanada.org/Events/Find-Local-Events and scroll down for information and to register for the Teal Teas.
But now is time to get started ladies....so who's with us today? What's new? What do you want to share?
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Hi chilly raining afternoon😀0
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Am 1 week since caelyx chemo and think i have manage post chemo ok. Still no word if approved for avastin but they have scheduled me as if i will be. Dr called me this a.m. to tell me this0
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Have signed up for look good feel better session ovarian symposium weekend. See if i can get joan crawford eyebrows0
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Dod you still have port?0
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@ToughAsTeal happy to hear from you and glad your first Caelyx went well. Hope you get the approval for the add-on of the Avastin. I too signed up fro the Look Good session...I'm doing the Friday. Most interested in skin care. I'm finding since my last chemo the skin on my face which used to be very silky now feels dry and thick and rough patches. Perhaps I need a change of product or regimen. Also love to see what they recommend about eyebrows. I literally have no more than a few stray gray hairs so always have to pencil them in. But, other than that, lots on the agenda that looks pretty interesting. I hope they get a good turnout.
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@Fearless - Vol Mod good morning. I was pleasantly surprised when i had the carb / caelyx combination. no nausea and it just left me tired at about the 2 1/2 week mark. Hopefully yours goes as well. Im off today for my third one Unfortuanely my ca 125 markers are all over the place. after first dose 1100 and then days later 500, to 1300 now. I think that drs. are considering taking me off chemo which is a bit difficult to digest. I'm getting another count down today just to double check. How is everyone else doing?
Here on the west coast we are having a huge wind storm. where did fall go?0 -
@ToughAsTeal @Fearless - Vol Mod. could you please tell me more about avastin.0
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I am also friday😀. I think the mascara part will be fun considering i have no lashes haha. Actually havnt been able to wear mascara for about 5+ years when my lids became so oily, even specialty sephora brands smudge off. And false lashes would likely bump my bifocal glasses lol. Orthotics, hearing aids, nightguard for grinding teeth... what a prize! Lol
i think agenda looks good. I see canabis is topic. Very interested. Plus cbc marketplace i think is covering that this friday? Maybe not cancer specific tho.0 -
Hey @gaylestorm so happy to hear from you although disappointed for you that your CA is bouncing. Hopefully they'll keep you on the chemo a bit longer before ditching it outright. Sometimes it takes time for the body to respond with any consistency. I"ll be keeping my fingers crossed for you and hope you'll keep us posted.
Following two gorgeous days here, we're starting to hit the end of the season. Dull, gray, drizzley day. Beautiful fall colours weren't so prolific this year (climate change I"m told) and now most are just dropping their leaves like crazy. If anyone thinks I'm going out to rake they can whistle Dixie. I'll go with the environmentalists who like you to leave your leaf covered lawns alone to enable insects to propagate in the spring...or something like that.
I'm doing ok. Some bloating and lots of fatigue because they upped my dose of Gabapentin when I mentioned it was having some positive effect on my neuropathy. Can barely keep my eyes open mid afternoon so have to plan my days around an afternoon power nap now. And usual split feeling about the upcoming chemo.....worry about something new and how I'll react versus anxious to get the stuff in me and doing its thing on the cancer.0 -
@gaylestorm hi😀 how are you keeping? Avastin. I wasnt offered it. Asked dr at my last appoinment as i knew i would be getting caelyx and my reading kept showing was often paired with avastin. I asked why i wasn't getting it, ant its about funding approval criteria that pharmacy has to meet with provincial guidelines. There is no medical reason why i dont qualify. So dr has resubmitted request.0
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@ToughAsTeal
also keen to attend the cannabis topic. i'm hearing good things from others about use of it, especially as an oil to run into feet or hands for neuropathy. I'd love to get off this Gabapentin if I can.0 -
@ToughAsTeal
sorry to hear you still don't have an answer on the Avastin issue. Don't take no, if that's what you get again, without an explanation of what criteria you 're not meeting that would allow you to get it. Just doesn't make sense to me, unless you've had it in past....in which case I have heard you can only have it once. Still, if it's life saving...then what the heck! Do let us know what answer you get, and I do hope the resubmission will get you the approval if the drug will actually be of benefit to your treatment.0 -
I did not know that about canabis and feet/hands. I keep intending to print off what you shared a few weeks ago? Your friends experience with avastin? I find it easier to refer to old fashioned hard copies, and a squeaky yellow highlighter works better with my retention/learning style.As for this caelyx first round. It was delivered slowly as if on protocol. And they monitored me closely for any possible reaction. I did my standard combo of senekot at night and restorolax during the day. The. Knocked off the restorolax.... now not anything. Had nausea first 3 days? Took olanzapine for that.0
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Thanks for that heads-up on your experience with the Caelyx first infusion. I'm told I'll get it the same way. Full dose but slow drip and lots of monitoring first time. If I don't have any problems then regular drip next time. Yes I also printed off the list of interventions I got from Janice and posted. Actually having lunch with her tomorrow so will be pumping her for any new recommendations since the last time. But I think I'm prepared for any side effects. More concerned for any reaction during the infusion. But most, I've heard, manage well.0
