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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Correction: SOFSOLE1
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Ty @Taita i will write that one down just in case. I originally thought that from what i understood I was going to have Caelyx every 2 weeks and Avastan every month. But I guess i must of understood wrong. I get Caeylx every 3 weeks and Avastan every 2 weeks. I asked them my dosages their on Monday i like to keep on top of things.0
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@Eileen so glad to hear your first treatment went well. Hope it continues like that after the rough time you've had. Just a little note for you, the Caelyx/Avastin regimen is slower to show effects than the almost immediate results you get with platinum based treatment. So if you don't see significant change in your CA125 or any scans right away don't panic. My oncologist told me that's why she waits until end of 3rd cycle before she orders any scans.
Great tip for the PF suffers @Taita. I think someone mentioned struggling with it recently...,may be ToughAsTeal? Thanks for sharing that.0 -
Good to know @Fearless - Vol Mod i thought i read something about that earlier and i was actually going to ask that question too today. When everybody first started did anyoned ca125 levels go up prior to the 3rd treatment. I expect with me having my ca125 levels checked 1 and half weeks prior to me starting the regiment i assume my ca125 levels are at least higher now. Or did they start going down at least a bit? From first treatment or stay the same?0
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Anyone have a support group starting to connect in person again? Ours, out here, went totally dormant during the pandemic which was a shame. I still don't know why they didn't move it to zoom. But now that most of the restrictions are lifted and most of us in treatment have had our 4th doses they've been in touch to discuss a gathering in the next month or two. At the least it's nice to see the participant list hasn't changed so those who were NED are probably still NED, the lucky ducks and the rest of us in treatment, who I've stayed connected with anyway, are all still thriving. That is a testament to how much more effective treatment is these days.1
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@Eileen my CA level did immediately respond. I started at 7500 and after the first cycle I dropped 1000 points. That stayed consistent until one check showed my level up 400 points. But as I've often commented, the CA is not the most reliable test to be hanging your hat on. It can be responsive to other types of abdominal inflammation and not just cancer tumors. So I didn't panic and week later my CA was down that 400 plus more. It's really the scans that you need to rely on and my first, after 3 cycles, showed most of my nodules smaller and those that didn't change were at least stable. My next scan is in April so we'll see if we're continuing to make progress. Even stable would be great to hear.0
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Oh wow @Fearless - Vol Mod good for you. Wow it really dropped didnt it. Wow congrats. I hope my treatment shows some great results too. I went to my daughters for the weekend not this past but prior it was nice i am planning on going to bear creek national park with my family for camping next month come easter if everything goes well.0
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All i know its so great to he able to sit outside and enjoy listening to the birds etc. Being that i actual live in an orchard setting. But at least i have a small enclosed backyard i can enjoy and soak in the sun as they say. Weather been so nice yesterday was a bit of a rain shower0
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@Eileen connecting with family and getting out into nature are just two of many things we can do to distract us from this disease and help with emotional balance and perspective. So glad you're doing both and I'm sure, being where you are, the weather will allow for that family camping trip sooner rather than later.0
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Currently in chemo round 4, but first after surgery. All good.1
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Yes i hope, i do have my own truck and 20 foot trailer but my kids feel that i should not attempt to drive it just yet being that i will be not as alert which i agree. I will stay in my sons 30 foot trailer0
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@Eileen I sure wouldn't suggest you drive that size of vehicle and for an extended trip while in chemo. The fatigue side effect alone would put you in some jeopardy of an accident. Driving is one thing I love to do but I've found mid afternoons the fatigue hits me and I'd be afraid of falling asleep at the wheel, so I don't drive in the afternoons unless it's just a quick jaunt to the store.0
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Thats great news @chris03 hope it continues. Unfortunately i did really great as well but i had few delays. 1 was i got covid ladt end of june 1 week prior to me having my surgery which put everything off for 8 wrrks and my tumors started coming back immediately after treatment. I think delays after surgery my last 2 treatments i jad like 5 weeks delays. I ended up having 8 chemo sessions but as everyone know the more chemo the longer your blood levels take to go up. But i am not letting this discourage me. All these wonderful ladies here on this support group has helped me do much. I am so greatful to have found this group. I am moving forward with renewed hope and a strong determination to survive.1
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@Fearless - Vol Mod Indeed I am! It was my first question. Same clinical trial team, same schedule of visits and blood work, kidney stent surveillance, eye exams, CT Scans every 8 weeks, etc. Gave me such comfort. I feel very well looked after and am thrilled I get to stay on it. This journey has lots of surprises on it and when the good ones come along we have to embrace them. Clinical trials are a big commitment and fortunately I am able to do it. Hopefully some of the results can help in future treatments.
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No i dont plan on it for sure @Fearless - Vol Mod i have my little car i use for any apoint etc. My truck and camper been parked since i used it in 2020.0
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@Fearless - Vol Mod yes I had 3 rounds chemo pre surgery and am on 1st after surgery today0
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@Taita that's great news. It was the same relief to me that when the Olaparib trial ended but they allowed me to continue the drug my oncologist kept to the same the surveillance schedule and process. Of course eventually the drug ceased to work for me but I ended up very fortunate that my oncologist has a very rigorous surveillance process anyway. There is indeed a comfort knowing they're "close by".1
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I second that @Fearless - Vol Mod . i keep my fingers crossed @chris03. here where my cancer treatment is we dont have a bell0
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Ladies, time to say goodbye for another Thursday. But we'll be back again next week and hope you'll join us again.
For those who aren't able to join us weekly but do review the discussions after the fact, I do hope you continue to get solace, support, information and even the occasional giggle.
For those today and who regularly join in on Thursdays, wishing you continued success and a joyous entry into spring. And, @Eileen when it comes time to celebrate the end of chemo, just let us know and we can be your "bell".See you all next week...in the meantime stay strong, stay safe, stay well.
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Well i guess it that time again. Boy this hr flies by fast
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THURSDAY MARCH 30 AND TIME FOR OUR WEEKLY LIVE ONLINE CHAT.
I'm a wee bit late today and trying to find my glasses so will forgo the usual commentary and just say welcome to whomever is with us today. Please say hello and tell us what's on your mind.0 -
Happy Windy Thursday0
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Hey Fearless! How are you?
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@BeamBlossom great to have you with us this week. @ToughAsTeal welcome too.
I'll share mine if you share yours LOL. How are both of you. Beamblossom how is all the treatment going and ToughAsTeal how did chemo go last Thursday?0
