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!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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Ladies it helps a lot to hear about long survival years for women diagnosed with high grade serous ovarian cancer.It means their is hope for us to be around for a bit longer.1
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@karenbemiHyperthermic Intraperitoneal Chemotherapy (HIPEC) is a process in which heated chemotherapy is pumped directly into the abdomen after surgery. It's been used in the States for Ovarian Cancer for a long time. Unfortunately there's only two clinical trials that I know of in Canada. One is at Princess Margaret and the other is in Calgary.
It uses heated chemo that your regular cells can tolerate but cancer cells cannot and therefore obliterates the cancerous cells still left behind from surgery.
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@KarenBemi Hipec is used in Canada commonly on other cancers affecting the abdomen as well. My ovarian cancer had metastasized into my omentum where there were three large tumors.0
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@Annie1950 - Thank you for that. I had not heard about that type of treatment before. What are the side-effects of that treatment? Sorry for asking so many questions, but I am very interested. it may help with the research panel also
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@Fearless - Vol Mod So glad I qualified, if not I was prepared to go elsewhere for it.0
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@Rad. Not a bit....,a lot longer. I’ve got way too much to do yet. 😆 but really there has been so much progress in just the last 2 or 3 years. Maybe cures remain the same but ways and means to live long term with this disease. I like to think of it like diabetes....you can live long and well as long as you take your insulin. OVC is becoming more like that.I do some work for AstraZeneca and my colleagues there tell me there are women from the original olaparib trials still around and still taking the drug 18 years later.2
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@karenbemi I had no issues with it at all but I can get back to you with the possible side effects if you like.2
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@Fearless - Vol Mod,thanks for that information its helps and gives me a lot of hope for the future.0
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Ladies its been a very informative chat,a great weekend to everyone and please stay safe.1
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Bye ladies...talk next week:)0
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I love encouraging stories. I have been talking with a co-worker a lot lately about the monkey on all of our backs. She is a childhood cancer survivor (leukemia) and she still feels the anxiety.
Does anyone else find that they feel like they feel something they think is a symptom....it probably isn't but...Since her and I have been talking...everything i feel, I feel is a symptom. it is driving me nuts1 -
Until next week ladies. Be well, be safe0
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@Annie1950 if you and @KarenBemi want to take that discussion further you can tap on her picture and then use the Message function to communicate. Or start a new discussion topic to share that experience. Others might be interested as well since we don’t hear about that process often. It may also come up on the 24th zoom for those who register.0
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Gals it’s now after 2 and time to say goodbye for another week. Great and fun discussion this week. New and old members too.Highly recommend you register for the 24th. It should be a very good info session.In the meantime stay well, everyone. Hope to ‘see’ you all again next week. Big hugs in the meantime ❤️2
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THURSDAY, FEBRUARY 25......WELCOME TO TODAYS LIVE CHAT!
Amazing how time flies. Can you believe our next meeting will be in March! Let's hope that also hails the site of spring on the way.
New to our chat? New member of OVdialogue?...welcome. We're all glad to have you with us. If you scan through previous chats, you'll see we talk about everything....obviously our cancer experiences, fears, but we also take time to celebrate the many successes...even the wee ones. Covid, the weather....everything is open to discussion. Feel free to jump in or just view. No pressure to participate if you're not ready. Just make sure you've signed yourself in to OVdialogue and then clicked on this chat topic to enable you to comment if you wish to.
So, did anyone zoom into the first in the OCC speaker series.....Dymistifying Clinical Trials? I thought Dr. L and Valerie did a splendid job between some high level technical information to bringing the expected experience to us. Wish I'd been a bit more on my game though. Unexpectedly had a bad reaction to my chemo in the afternoon so was feeling a bit beat up. But it was nice to see that my experience and what the clinicians expect seem pretty well aligned. For those who want a refresh or those who couldn't dial in, they will be posting the video including the slide deck on the OCC site. Give a week or so as they need time to edit and there will be an announcement when it's available.
So much for today's intro....it's 1PM .....LET'S GET STARTED.........
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I see we have @Susan and @Sylviequebecbc with us today. Welcome ladies. Susan, I think you had your surgery this month? All good?0
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Hi all, beautiful sunny day here, cooler than yesterday but I'll take it! Just back from a walk... in time for the chat!
I listened to the first half of the webinar last night but was weary so I'll finish it after the recording is posted.
@Fearless - Vol Mod how are you feeling... is this a good week?0 -
Hi! I did view the the zoom webinar last night, really helped me decrease my fear in participating in a clinical trial. Nothing planned yet, I will talk to my oncologist in April0
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Hello! Nice to be here again this week.
@Fearless - Vol Mod - I did zoom in for the speaker series yesterday and found it quite informative and interesting. It was also wonderful to get to see you!! You did a great job!0 -
It is my first time here, can I just ask any question I have?0
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Opps....hit send too soon. @Fearless - Vol Mod - wanted to add that you looked really great - especially for having just had a chemo session earlier in the day! Way to go, gal.1
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Had my radiation planning session this week, think that's why I've been tired, it seems like I have been more stressed about it than I realized.
Should hear about dates for treatments by end of next week.0 -
My chemo treatments are suspended now, because I had a anaphylactic reaction to carbo on the 8th time...don’t know yet what will come next0
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@Sylviequebecbc if your oncologist does offer a trial as an option and you're still nervous, let me know. Happy to discuss with you. That was me on the zoom last night. Glad to hear the presentation helped with anxiety you might have about participating in a trial.
@Readersmaven it did go later than expected unfortunately. Lots of good info though so do watch at your leisure once posted. Thanks for asking. I'm ok today. A good night's sleep is all I needed. But I had Carboplatin my first time around with no issues at all, and yesterday was my 4th dose since back in conventional treatment and the first 3 were just fine. But this time, half way through my nose suddenly plugged up, burning from my stomach all up to my throat, and palms of my hands when blood red and itchy. Scared the heck out of me. But those chemo nurses are so great...withiin in seconds they had the chemo stopped, saline flushing my system and were injecting hydrocortisone into the line to mellow things out. I just hope this doesn't mean a change in drug. So far the Carbo has been working like a dream. My oncologist is out this week so hopefully talk to her on Monday and find out what the plan will be. Hoping they'll try it again...may be more or different pre-meds and slower infusion. I'm willing to try before we change anything. Last CA was 43 after only 3 cycles, and down from a start of 3000 so clearly I'm responding well.0 -
@Fearless - Vol Mod wil keep my fingers crossed for you, as you say, you are responding well. I've heard that a slower infusion can solve problems, I'd be line you and say let's try that first.0
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Hey @Readersmaven - hope the treatment planning session went well and that you feel better soon. I know the feeling - and yes, stress can certainly have a big impact on how the body feels and reacts.
Welcome @Susan and @Sylviequebecbc
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Oh, @Sylviequebecbc, how many chemo sessions were originally scheduled?
I had a CT scan at the beginning of this month, and blood tests of course, and everything is fine.
I had a bone scan, simply because every two years or so I have shoulder problems: calcific tendonitis and /or frozen shoulder. So I have a pre-osteoporosis condition apparently, (I'm 64) and nothing needs to be done now, but they'll check again in 18 months.0 -
@Fearless - Vol Mod for me, my reaction was so severe, they also acted quickly and stopped the infusion. Apparently, this happens to about 30% of women on carbo0
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@Elsie13 I had another 6 cycles planned, had 2 only. I did get 6cycles of paxi and carbo last winter.0
