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 guess I just missed you @Fearless - Vol Mod if anyone else is on here I will be for the hour as a newbie and impending surgery. thx0
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@mjmck21 welcome to your first live chat and sorry it's a diagnosis of this disease that brings you here. But you do have the support of all and like you we've all been through those times where we try to prepare for what's ahead without much information to help that process. Operating in the dark can be scary for sure.
My own diagnosis and treatment didn't quite mirror yours. I'm HGSC 3C back in 2017. No pre-chemo. Straight to surgical intervention and then 6 rounds of chemo to back up what was done surgically. But I did have the zipper, as I call it. With me the scans showed so much gray area that they weren't totally sure what to expect. Yes even had me marked up for a stoma as they were positive at least part of my colon was involved. As my surgeon said. When we open you, if there is more than we hope for we'll close right away, put you through a few rounds of chemo first, then go back in and follow up with more chemo. But I was fortunate. There was less than they expected and while the surgical opening was very long to allow the to examine every area of suspect, the ended up dealing with a tumor on my right ovary and a small on on the left, along with the full hysterectomy etc. I also had a pleural effusion under the right lung. It was drained during surgery and while it started to return post surgery, the first round of chemo eliminated it totally.
As of surgical recovery, it wasn't very trying for me. They had used a pain block, like an epidural, which kept me pain free and very mobile for the first few days. After that I needed nothing more than the occasional Tylenol Extra Strength to take the edge off. I credit fast recovery to a husband who was a like an army sergeant getting me out of bed and walking he halls at the hospital and then at home with rigor.
I hope it goes well for you. I'm sure others of our community will weight in here or in any other discussion threads you may wish to post to draw in feedback. Keep us posted and reach out as you need help or information any time.
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Hi all happy st Patrick’s day😀 sorry late getting logged in today. @mjmck21 so glad you reached out. I was also diagnosed stage 4 hgs with pleural eff. 2 years ago. Same course of chemo and full hysterectomy like what you will be getting. Long incision too. I was told I might also wake to an ostomy. Didn’t. But I can share more with you if you want.@fearless how has post treatment been for you too? I am super tired (avastin?), juggling milk of mag, restorolax etc to find balance. Nice day for short walk.1
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Good morning everyone late as well.0
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@taita what great news and it just goes to show that there are constant surprises with our treatment. When I was on the Olaparib clinical trial I had success beyond their expectations too. At the year mark the trial was to end, but since it was being run by the pharmaceutical company, they committed to provide the drug free for anyone for whom it was still having positive impact for as long as that lasted. So the last months I was on Olaparib it was off trial but free. In toral I ended up with a two year benefit for choosing to participate. So you go gal. Milk that treatment for as long as you can and I'm assuming that if it eventually looses it's efficacy they can always introduce the Taxol/Avastin protocol then? That said, with the way research is going, who knows what new tricks they'll have up their sleeves the next time either of us needs a change in treatment. Thanks for sharing your news. I'll dance a little Irish jig on your behalf today.1
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@Eileen how has your week been?😀0
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@taita that is good about being able to continue with treatment plan!1
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A little sore. Ty for asking @ToughAsTeal my right flank pain has calmed down to like its their and not their. Went to my daughters this past weekend ti get out of the house it was nice.0
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@ToughAsTeal no treatment for me this week. My week off. I did find with the 15% dose reduction for the Caelyx that my side effects this last time were less intense and didn't last as long. So given they were tolerable, I'm holding to that new dose. No need to drop it any more. Have had a nose bleeds the past two days. Interesting though that even with the blood thinners I'm on, they stop pretty quickly. And for the first time little red dots covering the tops of my feet and up my ankles. No blisters though and they don't itch or hurt so I"ll just keep slathering on the cream. Next treatment next Wednesday....just Avastin thankfully.0
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@Eileen amazing what a mini mental vacation can do! Glad to hear pain is improving0
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@fearless my chemo/avastin is next Thursday as 1245 so I likely won’t be joining in. I am using the prescription betaderm (hydrocortisone) cream to help with start of h & f again. But not major thankfully0
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@fearless re nosebleeds I use Secaris ointment and it has helped I think. Nasal very dry. Using cool mist personal humidifier I can take from bedroom to living room if needed.0
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@ToughAsTeal and @Fearless - Vol Mod. I will be starting Caelyx and Avastan too. Coming up just waiting on the ph call for my first round. Been reading on here from what to expect about side effects and what been helping for other ladies.0
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Thanks everyone. I also just realized I need to refresh my screen to see the responses
@ToughAsTeal thank you I would like to know anything you would like to share about recovery with a long incision. happy to learn more here or if you want to pm me as well. Having the incision in the upper abdomen seems like it would further restrict recovery. esp getting in and out of bed, off the couch etc thx
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@mjmck21 will pm you!0
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Thank you!0
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@Eileen Caelyx and Avastin has been a source of lots of messaging lately here as you have likely already read!0
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@ToughAsTeal yes i have been reading and checking older posts on what to expect. A little nervous but being very positive at the Same time.0
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signing out time for much needed sleep. If I don’t catch up next week, talk in two!Keep moving forward0
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K have a good week everyone and have a good St Patricks Day.0
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Signing off as well. Have a great week everyone!! Happy St. Patrick's Day
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Thank you!0
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The official sign off now gals, To everyone headed into new treatment, or surgery good luck and may it all be as successful as hoped. For everyone else, continue to hang in. Stories like Taita's are becoming more and more frequent these days. Lots to hope for. As I often say, for those of us who'll never be cured, the fact that we're able to live longer and better with this disease is a testament to all of the focus OVC is getting these days from researchers and pharmaceutical companies.
Have a great week everyone. See you next Thursday. Now off to get my corned beef and cabbage prepped....and make sure there's some Guinness on tap.
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Thank you @Fearless - Vol Mod for your response. I saw it much later and wanted to thank you for those details.0
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WELCOME TO OUR LIVE ONLINE CHAT TODAY...THURSDAY MARCH 24.
I don't know about you but for me spring is in the air and with that I feel so much lighter and less burdened these days. My life is less a battle with this disease but learning to live in harmony with it. How are you feeling right now?
Did anyone attend the Speaker Series session last night on managing fear of recurrence? I had intended to dial in, even though after six years and 4 recurrences I no longer fear it...just expect it, but coming out of treatment yesterday was a bit tired so did what I always advise and let my body tell me what it wanted me to do...which was go to bed.
Quick note to all of you, I just posted a new discussion thread for OCC. They are hoping to collect stories from Teal Sisters about their experiences with access to care and treatment. Having first hand accounts of challenges faced would be very helpful as they continue to advocate for improvements in our access to care.So let's get started ladies...it's 1PM and I'm sure you're bursting with news and questions. Say hello...tell us what's on your mind today.
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Good morning. Well i had my first Avastan and Caeylx their just on Monday. 4 days back. So far all good. On a good note my blood pressure this last week for the first time in over a yr is back in normal range and i have been feeling really good this past week. I was able to do some back yard work. Felt good to do something again so i will take these goods days for now. Yes weather is gorgeous here in Kelowna BC. Been outside last few days in backyard enjoying it. Sitting reading a book. Even getting some sun. Wow in march too. Lol.0
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I for one am ready for sunshine and some warmth!! If any of you are suffering from Planter Fasciitis because of your treatments, I just discovered “SOFSLE” support inserts for shoes. Amazing!! I bought them at Sportcheck $24.99. I wear fit flops in the house but it is still a little cool for them outside. These are a game changer for me feet. Just a little tip! Happy Thursday.0
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I wasnt abale to connect last night we had some person hit a power pole just actually below my house on the road and knock out power hear just before. They managed to reroute power2 hrs later while they put in another pole0
