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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Can someone remind me please of how to see who is all 'here?'0
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I'm doing fine and really enjoying the sunny weather here - finally! It's been a LOT of rain and wind prior to the last couple of days.0
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Good to hear @maggiemae
Depending on your display, look to the right near the bottom of the Categories section
You'll see Who's Online with the icons or photos0 -
Anyone know what happens when after a recurrence you have cells remaining that have shrunk but still there.0
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Sorry, I should have said that six rounds of chemo were completed0
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Hello again @Scarstef, has your medical team provided you with a treatment plan or are you currently on treatment?0
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We've had a few visitors tonight - great to see this community connecting.
Hope everyone has a great rest of the week... see you around the site.
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Hi @scarstef, I'm sorry to hear of your outcome. Let's hope we can find you some answers soon to ease the anxiety you must be feeling! I'll give you what info I can, and will connect you to some to the others who can offer additional info and support. I'm not sure what happens in your circumstance, as I've not yet had a recurrence, but I suspect it may be an individual choice to some extent. Perhaps @Flowergirl, or @MarilynOCC can give you more information, along with perhaps some of the women, such as @Devanator, who have had recurrences.
Do you have a copy of the 'Still By Your Side' manual ( https://ovariancanada.org/living-with-ovarian-cancer/support-resources ). It's specific to recurrences and is a free resource, which comes highly recommended. Also, have you had genetic testing done to know if you are BRAC positive? If you are BRCA positive, you may be a candidate for the drug 'Olaparib' (Lynparza); a 'PARP Inhibitor' which stops the cancer from spreading. Your best bet is to discuss any and all options with your medical oncology team to help you decide what you want to do. Your team will be able to share all the options that are available to you, along with the risks and benefits of each option. Don't be afraid to ask lots of questions....that's our greatest strength as women with cancer. Knowledge gives us a bit of power over our circumstance and leaves us feeling less alone, less overwhelmed, and less at the mercy of this disease.
I've found that it helps to write all my questions down before meeting with my team, so that I don't forget to ask anything. I had a similar similar situation after my first surgery and chemo (tumors and cells remaining), at which point I opted for HIPEC surgery to get the rest of the tumors and cells out. But I'd not had a recurrence at the time, such as you have. In my case, I just wasn't comfortable leaving the remaining tumors and cancer cells inside of me. Everyone is different and the choices we make in our cancer journeys are sometimes very personal. As such, and because I'm not a doctor, I can't say what would work for you, but I do hope you have a comfortable relationship with your oncology team and are comfortable asking questions!
I hope this helps @scarstef! Do keep in touch to let us know how you make out. Best wishes going forward and warmest regards, M.1 -
Thank you @flowergirl :-). Sorry for the late reply. We had a power outage just as I read your message. Haha...go figure, eh?!
Anyway, am I correct in thinking that only you and I showed up for Teal Tuesdays tonight? Or did the power outage perhaps mess up my computer, which was showing only "1" person attending (besides me I'm assuming)?
I hope you have a pleasant evening and a relaxing week. Warmest wishes till next Tuesday, M.0 -
Hi @Scarstef..I think @flowergirl may be right in that may be good to speak with your oncology team to see what the plan is for you...maybe there is a plan...you just dont know it yet!0
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Hi @Flowergirl, @maggiemae and all our Teal Sisters...I'm going to have block my Tuesdays off as I'm always late it seems...0
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Hi @Fearless. Rough night last night. Usually takes a day or two for the effects of chemo to kick in (had another treatment Monday) but this was the worst yet. Night sweats, hot flashes (which I've never had even with menopause), nausea, and vomiting (just once), inability to sleep along with some heart burn. Have never had this severe a reaction. Not sure what the difference is this time. Hoping things improve. Seems I don't get over the treatment as easily as I was for the first couple. Have to think long and hard as to whether I want to do the sixth chemo scheduled. Not sure I want to go through four weeks of not feeling good. Oncologist has also suggested possibility of surgery to remove my ovaries as they are more resistant to the chemo. Not sure in these Covid times I want to consider surgery. Need more answers on how invasive it will be, side effects, complications etc. Oncologist will discuss with surgeons and get back to me July 14. Tough decisions.0
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@Fearless...sorry that it's been a rough nite for you. I understood that with each chemo your side effects can increase or your reaction increases...maybe they can adjust the dose...they did with mine because I would get severe leg pains after each cycle. I would take pain killers for it as well my nausea increased with each cycle...hopefully they can help you so you can decide what's best for you. I hope you have a better day!!0
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@Fearless...sorry that it's been a rough nite for you. I understood that with each chemo your side effects can increase or your reaction increases...maybe they can adjust the dose...they did with mine because I would get severe leg pains after each cycle. I would take pain killers for it as well my nausea increased with each cycle...hopefully they can help you so you can decide what's best for you. I hope you have a better day!!
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@Shortone I'm sorry to hear you're having such a rough time with your chemo. It's interesting that some find the side effects get more difficult as the chemo builds up in their systems, yet others say the effects got better as their bodies adjusted to the toxins over time. It just goes to show we are all so different. I wasn't aware that the ovaries are more resistant to chemo. That's interesting. Mine were removed in my surgery along with everything else and the weeks garbage I'm sure at the time so the subject never came up. Whatever, the case make sure your oncologist and chemo team are really really aware of how you're faring. Hopefully they can adjust meds to give you some relief.
As for concerns about surgery during the pandemic, I have to go in myself (hernia fix) and that was my first reaction too. But when I thought about it more, I realized they wouldn't bring me in unless they were totally confident I'd be ok and the surgery was necessary. And the hospital itself has probably never been a more sterile environment than it is now. The only bummer is likely not being able to have my husband there at all or with the frequency I'd like him to be. But a couple of friends who've been in recently told me they got far more attention from the staff than they'd ever experienced before.
Good luck with your appointment next week. I'm sure you'll get all your questions answered and be able to make an informed decision on both the future of your chemo and your surgery. All the best....and no matter how rough things are right now, there is light down the road.0 -
Good evening everyone if you are around tonight - @cbot @Shortone and @Fearless @maggiemae
Hope you are managing well today0 -
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And if you are also around tonight, hope you are managing well @nadiaC and @kattie666 with your recent treatments0
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Couple sleepy days but doing ok I think!?? lol Not exactly sure what to expect but not feeling as bad as I had worried about!!
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Great to hear @kattie666 - you rest and do what you need to do to get through it!1
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Hello @flowergirl, if you are still around!0
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Hello @cbot and welcome - if you look from the home page, under the Who's Online you can see the participants logged in tonight0
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Dear Lord! I actually made it! Hello!
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Thanks for the welcome @flowergirl. Going for chemo round 3 on Thursday. Glad to hear you're doing ok @katie666!2
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@kattie666 - I found the same thing - my preconceived idea of what it would be like was far from reality.
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Hello @kastoyles!
Hope you find your groove on what works for you @cbot
I'm thinking of those having a particular hard time this week, sending much encouragement. Since there are a few of us on tonight, perhaps if you are up for sharing what helps you cope when the day is tough, we may be able to support those "viewing only". For me, if I have a tough day, a hot shower and then the comfort of a warm blanket helps so much.
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I've only had 2 treatments so far. I am addicted to popcicles trying not to over eat....
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@Flowergirl - I like to tune out the world for a while, put on the ear buds, listen to the tunes I love and do some deep breathing. I try to do this for at least ten minutes every night. Going for a walk also clears the brain and gets me away from the four walls, even a short walk makes a difference.
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@kattie666 - it's ok to indulge yourself - small things can help us get through the difficult times
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