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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Hello Fearless!
Just the two of us so far?0 -
Hey BeamBlossom. Glad you could make it today. Looks like Tinazzie just joined us as well.0
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@BeamBlossom @Tinazzie are you intending to participate in the OCC symposium at the end of the month?0
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Hello! Hope everyone had a good week.
Yes, have registered for the symposium - looking forward to it as well. Is there an agenda for the 2 days? Perhaps I didn't look in the right place....0 -
Hi Tinazzie!
I'm trying this from my lap top instead of my phone today, but it looks like I have to click out of this discussion and then back in to see new comments, so that's similar to the frustration of using my phone. Is it like this for everyone?0 -
Yes, I think you have to refresh the screen to see the new messages0
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I will register for the symposium but have not as yet.0
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@BeamBlossom yes, it's my biggest frustration with the functionality of the platform. I've raised it, even to suggest at a minimum a refresh button might help..along with, of course, my usual very expensive fix suggestions LOL.0
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Are you old enough to remember getting a wire from overseas? This forum reminds me of communicating by wire , lol0
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I'm doing somewhat better this week. Still dealing with fatigue. Some days I'm scrubbing the kitchen but then the next day I find I have to force myself to even take a walk down the street!
Haha...yes, the ol' communicating by wire days! How are you @BeamBlossom?0 -
@BeamBlossom I'm old enough to remember when they used to strap notes to the legs of pigeons LOL. Seriously though, this platform wasn't built for live chat so it does need some refinement for sure. OCC are keen to make sure the best functionality available so I know they're looking at possible upgrades.0
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I've been looking for more information on the CA125 and some evidence that increases don't necessarily point to a recurrence. My onc is not big on relying on the CA so I'd hoped to find evidence of it showing a false positive for recurrence but I couldn't find any. I had mine measured again yesterday, it was up to 31 from 24 a week ago. Its very hard to not worry about that.0
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I'm hoping the symposium might offer some insight on better understanding its effectiveness and limitations.0
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Tinazzie...what you describe is just how it went for me for the first 90 days0
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Hi everyone. Can't stay, just stopping in to say hi. Getting ready to go for my follow up CT scan. Hope everyone is doing ok. Hope to stay longer next week!1
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Good afternoon ladies. I am still dealing with the fatigue from my LAST chemo!! Hopefully will improve steadily. Now on to recovery!0
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@Fearless - I think I remember you mentioning that you had joint pains following the chemo treatment. Does that still bother you? Have you had any physio or other therapy to help with that? I had quite severe joint/muscle or perhaps even nerve damage following my hysterectomy which flared up during chemo. Somewhat better now but still quite painful.0
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I feel for you @Tinazzie The last few days, for some unknown reason, I'm fine for a day or two and then just crash. May be a side effect of the Olaparib, may be just the changing season...that always affects me. But sure isn't fun, eh? I do remember that while in recovery from my first line treatment that I had what you're experiencing but over time the bouts of fatigue would be fewer and fewer and the length got shorter and shorter. So all I can suggest is just be patient. It's your body adjusting to coming off all those toxins running through your system. If it's telling you you need to rest, do it. All part of healing.1
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HiKatie666 bet you are glad to be done with the chemo!
@cbot - good luck with your scan!1 -
Hi all! Just popping in for a quick chat...@beamblossom check out ShareCancersupport.org they had a webinar focusing on ca125 yesterday. I don't know if they archive sessions or not but it was quite interesting. One thing the Dr said was that highest concern comes when level doubles from wherever it was lowest.0
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Thanks for that Readersmaven. This what I find so confusing, at 31 I am below the threshold of normal, but still 4x what it was 3 and a half months ago.0
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Thank you for the well wishes. The biggest challenge is to stay out of my head and in this moment. Can't keep thinking of the worst. My kidneys have really taken a hit with the chemo. My dr. is talking dialysis training soon. I haven't had the courage to ask if transplant is off the table because of the cancer diagnosis. I don't think I am ready for that answer. My sister is in the midst of tests for a living donor transplant. He did not mention that option to me so I am assuming it is not on the table yet. ugh....0
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@cbot, so nice of you to stop by. Just a hello is awful nice to hear. Good luck with your CT today. @Tinazzie the joint and muscle pain is largely gone. I still get some pain points where I have osteoarthritis - my thumbs, wrists, knees, and big toes - that flare up from time to time. But that's a side effect of the Olaparib. What is left from the original chemo are muscle spasms in my legs in the middle of the night. That seems chronic. It's been suggested magnesium would help but my blood work shows I'm on the high side of normal there so not much I can do about it it seems.0
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I keep telling myself that it's only a marker. Lowest mine got was 59. Last month it was 90 but that was after I had elective surgery (mastectomy) so hoping next will have dropped a bit.0
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That's a tough complication to contend with Katie, is there any chance your kidneys might rebound in time?
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@Readersmaven glad to have you join us today. Hope all is well or as well as can be. @BeamBlossom when you register for the symposium you have the opportunity to input a couple of questions under the category "Ask an expert". I wouldn't be surprised if others might have already asked the same question about the CA but the more they get on the topic the more likey it will get posed and answered. So try that route. I know it's a hot one for many.
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@Fearless - I was tormented by muscle spasms most of my adult life, mainly in my feet but sometimes a dickens of a charlie horse in my calf, I have found magnesium and potassium to be a godsend, I understand it is the balance of these two minerals that is key.0
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Hi ladies my body is just getting back to normal after my 1st chemo session.0
