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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Comments
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@cbot, thanks for sharing your experience with the Gastrofil. All I know about it is that it's a newer drug in the same family as Neutrofil. I guess for us, no different in terms of side effects then. Hopefully as effective or more so than Neutrofil. Your next blood work will be the test, eh.0
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On the topic of recurrence symptoms, what I’ve been able to gather from others, is to pay attention to any changes in bowel habits, any chronic ache or pain in the upper it lower abdomen and and sensation like bloating.0
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Thank you @Fearless, for sharing your story re: recurrence. I also had minimal symptoms prior to my initial diagnosis, but in retrospect, digestive function (loose and frequent stools - sorry if I'm sharing too much!) was a problem in the months leading up to diagnosis. I will monitor that closely in the months following completion of my chemo. It's hard though, because that symptom can be caused by the chemo itself and a myriad of other reasons!!!0
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@BeamBlossom nuts. I thought Sunnybrook was part of the University Health Network in which case you'd have access to the portal and all your blood work results. But I just checked and it isn't. If there is some issue about getting your onc to provide the results you do have the right to request a copy of them..either to pick up or sent to you. That said, reading and interpreting them needs some help but perhaps your GP could help with that. In fact, perhaps she or he could request them and then share with you. I think we all share the anxiety related to waiting for information.0
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My GP did order these last two CBCs and I get them done at Lifelabs where you are able to log on and get the results.0
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@cbot you're absolutely right. That's why you look for something persistent, that also doesn't have a logical explanation...like shoot I've got to stop eating chinese food! And if it persists over a period of time (couple of months) that would trigger me to ask to have my CA125 done and then maybe again a month or two later. And then if it's rising and the symptoms aren't improving that should be a signal for further investigation.0
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I still find it disconcerting that so much of the monitoring for recurrence is left on us, the patients. I know we need to be in charge of our own health, but it feels to me like I would be floundering a little. I have a follow up appointment with my oncologist this coming Monday, so I will ask her again about post-chemo follow up plans. I don't know yet if CA-125 is a good marker for me, but it seems to be. It was 236 pre-surgery, and 36 post surgery.0
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BTW ladies, this is only my experience but I know the stress of wondering if there is something growing there you don't know about and, like your initial diagnosis, will be found late. But for me, my recurrence symptoms started way back around August 2018 and it wasn't until mid December that I was scanned. That seems like a long time but the two tumors that showed up were less than 1mm in size...that's smaller than a very tiny pea. And my cancer (high grade serious epithelial is the most aggressive of the categories) Had they scanned too early, the tumors would have been so small they likely wouldn't have shown up. And add to that that by the time I was put on the Olaparib another two months later, there had been no significant increase in size of the tumors. So there is an element of patience and trust in your medical team when it comes to addressing any issues you might raise with them.0
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@cbot My CA125 was measured as part of each pre chemo blood count, as it downward trended with each chemo that showed it was a reliable marker for me. Do they measure yours with each complete blood count being done?0
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@cbot ca125 isn't a great marker for me, lowest it got was 59 after treatments, but it was over 4000 so good response to treatment. Was up a bit last month but I will have blood work next week so hopefully it will be maintaining levels.0
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Hi @BeamBlossom, not they don't measure my CA-125 each time. In fact I had to insist on the post-surgery, pre-chemo reading. I will ask my oncologist if she can include it in the upcoming testing.1
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@Fearless, so these two tumors smaller than a pea caused havoc with your digestive system?0
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Off to do a yoga class, will read chat later. Thanks for sharing.1
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@cbot I think your views are shared by many. Hence I was hoping to have a few of the gals with recurrence experience on with us today to share. I was talking to someone today who equated our experience to being on an assembly line starting with diagnosis and through the treatment cycle,where everything is consistent and prescriptive and you have little to do other than stay on the line,,but then it's all over and you just get dropped off into a big vacuum. I thought the analogy quite good. But this is where advocating for what your needs are,within in reasonable boundaries, becomes important. But also your responsibility to educate yourself because it is knowledge that empowers your advocacy. Make any sense?0
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@beamblossom yes. Not really havoc but a persistent change in bowel habits that became noticeable over time. Why, I don't know. Does it have something to do with enzymes or something the cancer secretes? Were the tumors pressing on something sufficiently to cause the change? Wish I could answer that .0
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Yes @Fearless, I agree. Knowledge is power! I have been finding, however, that I have been obsessing about gaining knowledge as my first round of chemo comes to an end soon. I have stage 3 clear cell carcinoma, which is pretty aggressive and often resistant to platinum. I have found in the last week that I have been going down the rabbit hole of fear and uncertainty. I guess that means that it is time to take a break, focus on other things and practice gratitude.
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So interesting, I had 4 large tumors and moderate impact on my bowels.0
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@cbot, when that happens to me, I focus on the many good stories of long term survival.1
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Thanks @BeamBlossom. That is what I will do!!0
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Well ladies it's after 2 so I'll close out today's session. I hope there will be others screening the discussion who might post some more experience to share with us all. There's no reason the discussion has to end with the close of the live chat.
That said, I won't be with you all next week or possible the week following. I'm headed in for some surgery on the 2nd..nothing major. Just a hernia fix and laser to any of the three cancerous nodules I have if they can get at them. So wish me luck. And pleased to say my partner on this chat, angel27 will be your host while I'm out.
Have wonderful week everyone. I'll be looking forward to catching up on the discussions when I return from the hospital. In the meantime, stay safe...and stay fearless!0 -
I’m going to sign off ladies. I see cancerconnection.ca has a video and discussion on recurrence featured.1
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@Tinazzie @BeamBlossom @cbot @Readersmaven @lavender
Common Symptoms of Ovarian Cancer Include:
BLOATING - Increased abdominal size / persistent bloating that doesn’t come and go
EATING COMPLICATIONS - Difficulty eating / feeling full quickly
PAIN - In pelvic and/or abdominal areas
URINARY SYMPTOMS - Urgent or frequent urinationOccasionally, there can be other symptoms, such as:
- Changes in bowel habits
- Abnormal bleeding – Any post-menopausal bleeding should always be checked by your primary health care provider or doctor.
- Extreme fatigue
- Unexplained weight loss
I believe Ovarian Cancer Canada is one of the founding members.0 -
Hi Fearless,
Thank you for taking time to highlight the common and other symptoms of OVC and the further helpful website. Very appreciate your best effort to alert us.
Good thoughts and prayer to you.1 -
Good luck with your surgery. I will handle Thursday. Not to worry. Take care of yourself. Prayers and hugs0
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Thanks all for your kind wishes and support. Just waiting for the call to tell me what time I need to be at KGH tomorrow...gosh I hope it's not 6am and something more civilized. Looking forward to being back with everyone in a couple of weeks. In the meantime, keep up the fight and keep supporting each other.
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@Fearless wishing you all the best tomorrow. Looking forward to knowing when you are back and chatting with us all.0
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Hi all. I haven’t heard how fearless is doing but hopefully recovering well. I’m here for today and tho not as skilled I will do my best0
