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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@Readersmaven article recently published on CTV news regarding cancer patients should not wait any longer than 30 days for the second shot due to immune system1
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Ok I need some info from those that are NED. It has been 13 months since my last CTscan and I requested one as followup. There had been a lesion on my liver last scan but no one seemed concerned. I requested one at my appt with my oncologist and was told unless there are symptoms she will not do one. Yet I hear that different centres do them every 3 months. What about you ladies?0
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@woody thanks for the tip about the timing. I think I will make a few phone calls today. If I can get #2 earlier, the better obviously. @CountryLiving welcome back again this week. Still doing the happy dance I'm sure.
@gaylestorm as I'm sure you know the CA125 is not the most reliable indicator much of the time but it is all we have failing regular scans. Over my own five years, I've come to realize it's not the score but the trends that are important. So if, over a 3 to 4 month period the CA is steadily rising and the jumps are large...like by 25% to 50% each time then it should signal time for further investigation. And the score itself is not necessarily aligned to the magnitude of the cancer. For example when I was first diagnosed my CA was 900 but the tumor on my right ovary was the size of a large grapefruit and I had two smaller tumors, one on my left ovary and one in my upper left quadrant below the ribcage. When I recurred the first time my CA was only 300 but the tumors were just under a centimetre each. This latest recurrence was a CA of 3000 but two tumors neither of which were more than millimeters in size. We are all different, the phrase we use constantly here. I just lean to my oncologist and her view on whether I should or should not be concerned. But I do always ask two questions....should I be concerned...and if not, why not?1 -
Thanks @Fearless - Vol Mod for your comments, glad to hear you are doing well! I am seeing my oncologist next week, maybe I should ask about Cisplatin too.
Enjoying the sunny and warm weather today, birds are busy and singing in the Kootenay! 😀0 -
Had my second Caelyx treatment on Monday and numbers still good and no symptoms again. Feeling good about that. Ascites is still annoying but hoping it will reduce as the treatments kick in. Low fibre diet to avoid bowel obstruction was a bit of an adjustment but getting used to being a bit creative with meals. No salads but it does not limit wine and chips!
It's the little things....... LOL! 1 -
@CountryLiving I've done a lot of research on the subject as part of a project I"m working on with Queens U....all Ontario specifc though. Once you leave first line treatment you move into recovery/surveillance mode. The general requirements are a "check up" every 4 to 6 months unless otherwise indicated and no requirement that even a CA125 or blood work is necessary. Most oncologists I have talked to go no further unless you are experiencing any persistent symptoms that might be indicators of cancer returning. Persistent = over an extended period of time with no relief. Alternatively any significant pain that doesn't abate. At that point they start the blood work including CA125. If the CA is up they'll check again. If trending indicates more likelihood of a problem they go to scan. Obviously this can differ from oncologist to oncologist and patient to patient but receiving a scan if there is no indication there may be a problem is not common practice. That said, I wonder about the lesion. Why did they tell you not to worry about it?0
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@gaylestorm I agree with @Fearless - Vol Mod I had a CA-125 of 49 when my recurrence came and the largest tumour was 6.5 cm. Smaller than the 9cm one I had at the outset when my CA-125 was 1800 but a big discrepancy in the CA-125. The best advice I have been given is pay attention and listen to your symptoms. That is what alerted me that something was wrong and I ended up recurring even though my numbers looked fine. We sure have to be our own advocates.
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@Fearless - Vol Mod I will have to look back at the report.0
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@taita, well said. @Sylviequebecbc I would expect if Cisplatin was a possibility for you as an alternative to the Carbo they would have raised it. I guess the question is whether they still consider you platinum sensitive. If you were responding positively to the Carb before your allergic reaction, then I'd ask if they had considered it. Perhaps, having had such a rough reaction they're just giving you a rest before getting back to chemo again. But yes, it never hurts to ask and much better than saying nothing and wishing you had later on.
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@CountryLiving do that or ask again. I have two lesions in my right lung that show up on scans and for which I panicked about lung cancer. But I was told not to worry because over the five years they've never changed in size, I don't have any symptoms that would indicate lung cancer, and they very likely have been there for many years either as a result of the chronic bronchitis I used get constantly or (I hate the admit this) being a very heavy smoker for many years. So when I now get my scan results I always look and the language always says, right lung lesions unremarkable.
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@Fearless - Vol Mod here is what the Ct scan said...1 cm well-defined hypoattenuating liver lesion in segment 7, stable. No suspicious focal liver lesions.
Whats your take?
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@Fearless - Vol Mod - your research on the subject of how check-ups generally work in surveillance mode, sounds very similar to what happens here as well. I have had to be quite persistent about the "extras" I have wanted from time to time (like my recent blood-work and a base-line scan following chemo).
@Taita....good luck with the new diet! I agree, going without the wine and chips is just not right!!
I too am still trying to better understand the low fiber vs high fiber diet. During chemo I was very constipated and was told to include a lot of fiber in my diet. Which I generally prefer because it means a lot of fruit and veggies (I'm a vegetarian). But now, I hear that following a low fiber diet is preferable to avoid IBS.1 -
@CountryLiving
I do know focal liver lesions are usually indicators of things like cirrhosis or other liver ailments that require immediate attention of some kind. Hypoattenuating I always have thought might be malignancy indicators so if I were you, I'd ask my oncologist about that term and what, he or she, feels it infers relative to follow up or investigation. I can drive my oncologist to drink sometimes when I push for answers to my questions that totally satisfy my "need to know and need to understand". Fortunately my gal is so incredibly patient and likes being able to get deeper into explanations. But until I was satisfied I understood why they feel it's not worthy of follow up I wouldn't let up on the subject.0 -
Ladies hope everyone have a lovely weekend!0
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@taita and @tinazzie, I swear I'm never going to get the diet thing right. I too suffered from chronic constipation and went to the cancer centre nutrionist who also told me low fibre was my better option with lots and lots of fluids and nightly Senekot. I had been fine until I started Weight Watchers which is high fibre mostly. Then we got into more discussion a couple of weeks later and compromised on a medium fibre diet and so far that's worked well for me. I do know that if I cheat and go hog wild on high fibre foods I sure pay for it the next day. But balancing our GI systems seems to be a common issue with most us.2
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@Fearless - Vol Mod thank you for the support. It is always good to know that Iam not asking for something trivial.0
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Ladies it's after 2 and time to say goodbye for another week.
Welcome to our new members. Thank you to those sharing good news this week. Hope for those with questions you've had some good input, but always remember, defer to your cancer care team before you try anything new.
And thanks to those sharing info on the Covid #2 shot timelines. That was helpful to me for sure.
Have a wonderful week gals. Wishing you all lots of sunshine, joy, laughter and hope. Until next Thursday...
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WELCOME TO TODAY'S LIVE ONLINE CHAT.....on April 22 and I'm a bit late today. Sorry about that ladies but it is time to get rolling again. I'm constantly amazed at how fast the week goes by and we're all together again.
Who attended last night's speaker series presentation? What did you think? I was so pleased to see the topic, Living with the Fear of Dying, on the agenda for the series. It's one we skirt, avoid, and seem never willing to raise as part of our emotional journey. Love to hear your feedback from last night and if you plan to attend the follow up session on Monday night. Those who registered for last night will automatically receive the link to join the followup. it's being included in an email thank you that you will receive today. No need for pre-registration.
For those who may have missed the request to complete the survey after last nights' presentation, here is the link https://www.surveymonkey.com/r/DCX56RS
I've just posted an announcement regarding a call out for volunteers to help support this site. It's titled OVdialogue Community Champions Team...Volunteers Wanted. Please have a look at it and if you're interested, private message me and I'll provide more information....no pressure to commit.
So gals, let's get going today.....who's with us....anything new to share....comments about last night....questions you need help with....or let's just talk about the snow that seems to have surprised many of us this past week.......over to you all0 -
Good Morning from sunny vancouver. I really got alot out of last nights session with Jennifer Turner. I am looking forward to sharing with some of my family. Is anyone out there, or have I got the wrong day
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Hi @gaylestorm i'm here. A bit late today. Yes I really valued last night. Any more you can share. What did you like best? What resonated the most? Did it meet your expectations? Anything missing or that you would have wanted to hear differently?0
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Good afternoon from southern Ontario where yesterday we had 2" of snow on the lawn. Today started sunny and now it is slightly snowing again. Just a reminder it is April 22nd!! Crazy! Good news is our local hospital is organizing for all of the oncology patients to get their second shot of Covid 19 vaccine. Should be within the next ten days or so.0
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Awesome @Taita Which hospital? I need to get ours in gear to get us our seconds too. And snow here too in SE Ontario but all gone by last evening and it doesn't look like it had any negative effect on what was already budding or blooming...I hope. Now let's hope spring is really here now.
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Hi all! I found session last night provided perspective on a difficult topic. It's given me a lot to think about. When we get the link, I think I'm going to listen to it again and then will share with my family.0
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I was amazed that some of my thoughts on death and dying, which I thought were unique, were actually common thoughts. I would be keen to try the hallucinogenic drugs. Prior to being diagnosed but after a high ca125 count I had a dream. It was a dream not a nightmare that I was dead. I was terrified and overwhelmed in this dream, but then I saw a person that had passed before me. The comfort that this dream provided me helped through the process of diagnosis and chemo. To have another experience like this would be amazing.0
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@Fearless - Vol Mod
Northumberland Hills Hospital is organizing it. Some are just getting their first shot as well because of the age requirement recently opening up. It is good they are tracking us and ensuring we get everything we need. Very impressed.0 -
@gaylestorm that's interesting! I'm hoping Jennifer will be able to share some additional details about that.0
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Wow @gaylestorm what an interesting story. And @Readersmaven glad to hear you tuned in too. I"m also going to share with my husband and son in hopes it will help open the door to more open discussion on the topic. Truly, I think her whole presentation has value for anyone, not just those suffering from cancer. I felt quite uplifted and free after.
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I was unable to attend but really look forward to the link so I can watch it. Sharing with family is my goal. I "feel" I am handling it well, but I fear they are not, although they hide it well.0
