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 Tuesdays - Live Online Chat! (Discontinued indefinitely)
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Good evening everyone. Hope you are all well.0
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The sun is shining and the weather is warming up - so looking forward to Spring.... HI @Quiltmama - hope you are doing well also.0
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I’m doing ok so far. Had recurrence then 6 chemo (Carbo and Taxil) CT scan Apr 25 so fingers crossed. Not sure what to expect to be honest.0
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There is an upcoming webinar session on Cancer Chat by de SouZa Institute if anyone is interested.
This is an online educational support group for all cancer patients and survivors with any diagnosis and stage whom are having chronic problems with sleep (insomnia).
Participants will be asked to track their sleep patterns in an online diary for 7 days for each week the group is in session. Participants will be provided feedback by the facilitator on improving their sleep each week.
This is an educational support group with weekly skill building topics based on a published cancer manual on sleep. Weekly chapters are delivered to your inbox which may take up to 30 minutes to read plus extra time for the exercise in which participants can complete at their own pace prior to each weekly session.
You can find out more here:
https://cancerchat.desouzainstitute.com/login
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Hi @Linda - so you are finished with the chemo now and then await the scan results, is that correct? Can you share how you are feeling physically, your energies?
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Nice there are a few of us together tonight - hello @jsullivan33 - thanks for stopping in.0
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Thanks for this info - I’m grateful that I’m sleeping ok even through the chemo. I’m hoping to get a reprieve from treatment at Princess Margaret so that I can focus on getting a hip replacement (too long on steroids killed my right hip bones). Through all of this, music and trying daily to have a positive attitude (had a few wobbles).
How are you doing ?0 -
Hi - yes rest is so important. I am dealing with fatigue so I've been taking just short naps and getting fresh air when I can so as not to mess with the sleep at night. I agree, music or some crafty activity can help shift your focus on to something pleasant even if it is for a short time.0
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Good evening ladies, just relaxing here, had my first post-chemo monitoring appointment at the Cancer Clinic today. I was asked if I would like to enter a PHASE 3 randomised clinical trial for Niraparib. My genetic testing results are not yet available, but even if I have Germ line or somatic mutation, I wouldn't qualify for Parp treatment until a first recurrence (when?) and have 2nd line treatment completed. So, I need to think about the pros and cons of a) doing nothing, or b) rolling the dice on a trial that could delay recurrence. I will consider these choices over the weekend before I sign on to the trial. Any thoughts or experiences that can help?
Judith0 -
I just finished chemo last Wednesday (#12). I’m only just starting to feel a bit better. Lots of fatigue even after 8 or 9 hours sleep. I’m anxious for the Scan results (Apr 30). It’s always felt like l’m living from scan to scan. I struggle with neuropathy pain in both shins and feet. It’s becoming a bit less this week.0
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Hi @jsullivan33 - yes, it is good they monitor you and can provide options.
@Linda, here is hoping the further you get past the treatment the neuropathy will diminish. I am looking into a cream for nerve pain to deal with that also.
We can so relate to the scanxiety... fingers crossed for you and yes, hold on to those calm moments when you can.0 -
Hi there! 🙋🏼♀️ see I missed last weeks chat. Would love to know what OCC has planned for World Ovarian Cancer day! I just dont read/see enough about the symptoms for sure, and none of my friends (who are all early 30s) had any idea either, and some of them have brca. We have alot of room for work to do 🤗0
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Yes, for sure - anything to promote the education and detection of ovarian cancer and it would be nice to partner with other health initiatives. I often refer people to http://www.hbocsociety.org/ as well. It is a conversation starter for sure.
For any upcoming OCC events - We can search all events or your local area at
http://ovariancanada.org/Events-Support/Find-Local-Events0 -
Thank you - keep well and soak up those calm moments also. 🤗0
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Thanks - Good night everyone - Hockey Games await! Hope you have a great evening and the rest of the week.
Look forward to the next group chat on Tuesday April 24 @7:00PM CST1 -
Dear @Linda, hope you are getting through this. my daughter made me cream from cannabis (coconut oil and weed somehow done up in the Instant Pot ..don't ask...) It works a treat on my neuropathy - hands, get, calves. The good thing is that the problem tends to wind down, and I am less bothered now. You'll soon have some relief.0
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Thank you @Flowergirl, they dont seem to have any events really in Toronto, which is pretty wild. I guess I have to create some now that I’m better 🙂🙂
To the other lovely ladies on here tonight, Hang in there 🙏🏼💕...I have no experience with trials or chemo bc there are none for mucinous cancer but I hope you find your answers and have your well deserved energy back soon 💛💛💛0 -
Hello all....sorry I am late to the party tonight! All this warmth and sunshine so late in the day is upsetting my routine...but in a good way.
I hope everyone is doing well.
I have a rising CA125 after having to stop my extended first line treatments due to an allergic reaction to Carboplatin.
Darn it...it was working so well even though I never reached NED. I have had two cycles of just Avastin but it doesn't seem to be doing the job. I will have more blood work and be reassessed regarding a drug change in early May.
This OV Ca treatment is such a bumpy highway!0 -
Hi Ladies! I’m missing the weekly chats because I have moved to Saudi Arabia. Yup. Scary and anxiety-causing! I am having Avastin treatments in Bahrain (which is another country but close enough to drive to.). I was taking 4th line treatment (Topotecan) before I left Calgary but it wasn’t really working. I didn’t know Avastin was available in Canada! @midcanada are you in a clinical trial or did your Dr.’s just offer it to you? Does your drug company pay for it or do you have to pay out of pocket? I’m curious because maybe when I come home for a visit, I could continue it. Thanks for any info you can give me! I wish you well in your treatment!
You’re right about this OV Ca treatment being a bumpy highway! 😑.
I hope you all can keep your chin up and look for the blessings in your life! Its one of the only things that keeps me going some days!
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Hi @Jeannie
You are very far from Canada! I hope your treatment is going well.
I was taking the Avastin initially with Carboplatin and Docetaxol and now get it as a single agent after problems with both the Carbo and Taxol drugs.
I am not in a clinical trial and do not pay for the Avastin. I live in Manitoba.
Keep your chin up and look for the blessings in your life.
I like this!
I try to find the joy hidden in each day.
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Hi @Flowergirl @terrylee and @Afab
I see your conversation about World Ovarian Cancer Day and thought I might be able to provide some information for you. The focus for Ovarian Cancer Canada this year for May 8 is to encourage people to use our voices and urge the government to invest in more research specifically for ovarian cancer. We have been involved in government advocacy in recent months, including lobby days on Parliament Hill in Ottawa, meetings with local MPs and MPPs and letter writing campaigns. You may have heard about these activities from your Regional Director and through our newsletters. This year, we are once again encouraging people to write to their local representatives asking for an investment of $10 million. We have set up a page on our website to make this easy for you and have several ideas to help you spread the word. We will also have a social media campaign that you can participate in. Be sure to follow us on Facebook, Twitter and Instagram.
Other activities for World Ovarian Cancer Day vary across the country including: information tables at Cancer Centres, Walk of Hope launch parties, other local fund raising events, and illuminations of local landmarks to name a few. These activities are led by local individuals or walk teams who want to use World Ovarian Cancer Day as a vehicle to raise awareness (and money) for ovarian cancer. If you want to learn more about you can do, check out the links below and also talk to your Regional Director about your ideas and what may be happening in your area.
http://ovariancanada.org/stories-and-media/Stories-of-advocacy/2018/Plan-for-community-action-this-World-Ovarian-Cance
http://ovariancanada.org/Get-Involved/Advocate/Email-your-elected-reps
You can find the contact information for your Regional Director here:
http://ovariancanada.org/about-us/our-team?lang=en-ca
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Hello - Good evening @Quiltmama - hope you are doing well and the sun is shining where you are!0
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hello @emsneil - thank you for stopping by tonight - it is quiet - My guess is all this nice weather people are out and about enjoying.
How are you feeling today?
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Hi @Flowergirl: Thank you for inviting me. I am good today. I enjoy my walked this morning. Choose to stay positive despite of many worries with this journey. I am trying to have time to read more about GCT.0
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IT is nice to get out in nature to help balance us!
Have you been able to connect with an in person support group as well?
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Hello @Flowergirl The weather gas been beautiful the last few days. Nice to see spring arrive finally!!0
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Yes I able to connect. I just being added in GCT sisters here in Canada.Learned lots of information.0
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great - I'm off for some peppermint tea with a friend
Hope everyone has a great rest of the week!
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Hello everyone - hi @terrylee0
