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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Have a good week !! Hoping for rain!0
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Sorry ToughAsTeall if you're still there. I got distracted trying change my search engine back to Google from Yahoo. Every time this system updates it automatically changes my default to Yahoo and I can't stop it. And it's a simple fix but I can never remember how to do it. Hmmmmm, memory loss, impatience....thinking the chemo brain is in high gear today.
Anyway, yes I'll add consideration to add a topic of Cannabis or something where we can experience with treatment outside of standard medical protocols. One member posted her entire experience with acupuncture recently. I found it very helpul. Thanks for the suggestion.
And given its now quarter past 2 now, and it's just the two of us, I'll say goodbye for another week. Stay well to you, and to anyone else reviewing this site.0 -
My daily laugh at myself. A post comes up in one of my Facebook groups I follow… fellow named Adam who is looking for gynaecologist in a certain area of Ukraine. I thought, how odd? Why would a fellow post this here! …. He was looking for a genealogist.1
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Hello @Fearless - Vol Mod - providing my experience with CT scans - I received my very first treatment (after surgery in 2018) at Durham Regional Health Centre where they used both the contrast drink 1 hour before the scan and the dye injection during the scan. Then in 2020 I had my first recurrence and I’ve been getting chemo treatments in Peterborough since then (so far, had 2 recurrences) where they don’t use the contrast drink. Just like yourself, the very first time I was surprised and asked a technician why it was not given. The answer I got was that different centres have different approaches but it did not mean that the quality of the image was compromised… So, I’ve had a good number of scans since then, all of them without the contrast drink only the dye injection during the scan itself. On a couple of occasions, those images were sent to PMH to my surgeon (when a surgery to combat recurrence was considered) but no comment that they were poor quality or did not provide enough information was made. So I hope this is somewhat helpful. Have a good week.0
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WELCOME EVERYONE - iT'S THURSDAY JULY 28 AND THE LAST ONLINE LIVE CHAT FOR THIS MONTH.
Thanks to everyone who commented on my question about the change in procedure for the CT scans. Yes, there is shortage of the contract fluid/dye so unless the radiologist deems it absolutely necessary to view what's being asked of him they opt to do the scan without benefit of the contract fluid and dye. That said, if the image doesn't reflect the areas as clearly as they'd like you'd get called back to repeat but this time with the contrast fluid and dye. I don't see any huge issue with that other than the inconvenience of a repeat if needed.
How is everyone this week. Progressing positively I hope. I don't like to brag (tee hee) but my CA125 is down another 200 points and my scan showed everything stable and still, going into 6 years now, no new cancer other than the two areas we've been tracking all this time. (knock on wood). So I'm feeling rather frisky today! I always love it when my oncologist walks in, scan report in hand, with a huge smile on her face.
I have decided, for my own health, to take a break from hosting our Thursday chats in August. I might be there if the mood strikes but likely not. But do go ahead and connect with each other anyway. I will be back in full swing in September though.Well ladies, time to get started so who (or is it whom) ever is out there, please say hello and tell us what's on your mind today.
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Hellloooo! Wooohoooo re ca125!!!!!I had my first tx with Vinoralbine yesterday. Went ok. My blood pressure spiked at the time. But i am back down to "normal" today.
had the appointment with cannabis dr. Prescribed a cbd (low thc) for daydtime. I havnt started it yet. Also prescribed a 1:1 ratio cbd thc for bedtime. But i must wean off current Rx sleeping pill. Talked to my family dr about doing that..l and he said.. are you having oroblems with it? I am not, in fact i sleep great with it. His response... why would you mess with a good thing? (Considering i want a good quality of life). Hum. Ya he said right thing to me. Meanwhile i have paid for the 1:1.2 -
Yes for break during Aug. I appreciate all time this has been for you😀😀😀😀😀0
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Hello!
Great to hear that feeling "frisky" @Fearless - Vol Mod - you deserve to! And good for you for taking a break from hosting these chats during the month of August. Again....you deserve to!
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Happy Thursday! Back from Italy and it was so good to feel “normal for a couple of weeks! What an amazing time we had. Relaxed and just enjoying each other’s company was the best! Started back on weekly Taxol and bi-weekly Avastin Monday. Bloody nose this morning so don’t know how long the Avastin will be able to be on the menu. Updated mammogram yesterday. Tumour is till small but
is growing and now we need a plan for that. One day at a time. A bit of fatigue but I think it is just my body saying “Not this again”. Lol! I have a date at the sidewalk sale with my husband so I will not be on for long but wanted to say back safe and sound (Pearson was a dream to get in and out of) and ready to enjoy the rest of the summer at home. Hope everyone is well and getting outside. Just a couple of pics on our last day. You may notice that the star of the show is our youngest granddaughter Amira! 0 -
Hi, I’ve had some time to take a few deep breaths and try to focus and attempt to make sense of my new situation. Covid also threw a few wrenches in moving forward. My husband and me both caught it a couple weeks ago. Fortunately mild. But this week I have had a liver biopsy (to determine if the mets are from breast or ovarian cancer) and a bone scan (to determine if the lesions on the spine seen on the CT scan appear to be malignant).
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@Fearless - Vol Mod Congratulations on the CA-125 and the report! What a great way to celebrate by taking the month of August to kick back and relax. Celebrate those 6 years and counting!! You are an inspiration to us all!0
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@ToughAsTeal and @Tinazzie
Helloooooo to you too and glad to have you both here today. ToughAsTeal hope the Vinoralbine produces the anticipated result and good for you to cross check the cannibis recommendation with your family doctor. I'm a big believer in informed decisions and often surprised to find I have options to consider and not just one path to follow or not. Do let us know how the daytime cannibis works for you, even if I'm the only curious one.
Tinazzie how do we find you today? Well? Any news to share?
Thanks to you both for supporting my decision to take a mini holiday from this forum. Betcha it'll last one meeting. I do know I suffer from major FOMO.
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@taita great pictures! I had some minor nosebleeds with avastin. Secaris nasl gel helped, I think.
@Tinazzie glad it was just mild. It has been making its rounds here. A friend has gotten it bad, and by luck, we were supposed to visit but it didnt happen. Otherwise good chance i would have gotten it. Maybe. You have alot to focus on cming up. And i am sending out good wishes.
jeepers my typos i am sorry today0 -
What lovely photographs @Taita! How great that you all made the time for such a wonderful holiday. The smiles say it all.
My daughter is getting married in Toronto next month - and I am still so looking forward to it. But, now, also with some anxiety and fear. Hoping I can push out any necessary treatments until I get back.0 -
@Taita I think you've given Pearson the first good press it's had in weeks LOL. So glad though to hear what a wonderful trip you had and thanks for checking in with us enroute and with pictures. You've inspired me and I'm sure others to step out of our comfort zones here and take a break from it all. Good luck with your treatments. Hopefully the bloody nose won't pull you off Avastin. I get the occassional one. Seldom lasts more than a minute.
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@Tinazzie
You've sure had a couple of tough weeks. So glad the Covid was just mild, for both of you. But then right into biopsys and scans...sheesh, a gal can only take so much. And now the waiting game, eh? I'm sending positive vibes to you gal that all results work in your favour.0 -
i just got my ca125 results. 16. Happy, considering i have had no chemo since july 6.@Tinazzie my mom, 20+ years ago, was advanced stage of her treatments with multiple issues. When my brother was married. I always thought how she kept stiff upper lip, but looking back, i can see she was filled with joy and truly enjoyed the day. I hope same for you1
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Thanks @Fearless - Vol Mod. My mind is still reeling from how I went from Stage 1 to Stage 4 in less than 2 years. But I guess this is part of what makes this disease what it is – it is so very complex.
I also think I should have been more forceful in advocating for myself, especially in terms of surveillance. Was moved to a 6-monthly schedule with no scans right after the first year of being NED. Even for this last scan, it was me who actually insisted on getting it (due to my hernia pains).0 -
@ToughAsTeal, right in the middle of the magic 0 - 35 score. You must be elated. As much as I often caution not to put 100% credence in a CA125, I'm also the first to breath a sigh of relief when I see it go down or back in the good old NED days, in that safe range. Let's keep it there, eh?0
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I hope research develops an annual gynae-gram someday. Like the mamogram. But with oess squishing.1
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@ToughAsTeal - that's great that your CA 125 is down to 16. Are you now done your current regime of chemo - or is it a short break?
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@Tinazzie you had the complication of the double whammy....breast and OVC and perhaps that's what's driving the aggressiveness of the disease in you. But you were and obviously continue to wisely advocate for what you feel you need now that you know more. It must be hard for our doctors to understand the sense of urgency we have when something feels amiss. To them we are one of many and they are stretched fully keeping up with their patient loads and with dwindling staff and supplies. But to us we are one of one and like most of us patience is not our primary virtue. That said, don't beat yourself up about accepting the switch to a six month surveillance cycle at year 2. That is generally the best practice recommendation. But just because something is considered best practice or standard of care doesn't mean you aren't entitled to ask for something else.0
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@Tinazzie It was a bit of a gafuful re treatment. I was supposed to get gemcitabine july 6 and 13, with a third week off, and then resume yesterday. Despite my ca125 having a major drop, the tumors showed growth (talking, mm) and oncologist felt gemcitabine was not longer an option, suggested its time to end treatments. I wasnt feeling that, and asked she search for other option. She came up with vinoralbine. ..so I missed the 13th, and started back on track yesterday.0
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@ToughAsTeal there's a new mammogram machine out there where you control the pressure on the clamps. Napanee hospital had a huge flood in the imaginng department about a year ago that not only damaged that area of the building but all the equipment so when they reopened it was with state of the art CT and MRI scanners and Mamogram machines. It was the easiest mamogram I've ever had. Funny thing, a year later Kingston had a similar flood......0
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Very wisely put, as usual, @Fearless - Vol Mod. You are so right about it all. As in gourmet kitchens, each pot of soup has a handful of different ingredients thrown into it and that's what makes each one unique. I know. Yet I seem to be looking for something - anything to explain why and how! It's likely the initial reaction, but I will get on.
Hope you have a great August and enjoy the weather, the family, the doggies and more!! Will there be a pause in the Teal Thursdays, or will someone else host?
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Agree re her picture! How little she knows what an impact she has made. @Taita thankyou for sharing!
@Tinazzie hoping to see a great selfie of you with your daughter when we regroup in Sept
@Fearless - Vol Mod you ARE fearless. This Aug break is the metal vacation to tap into your friskiness!Best to you all, and catch up in Sept0 -
Well ladies, time to say good bye but this time for a whole month. I'll still be checking in to the site as I normally do and will always respond to a private message if anyone needs me. It's not like I'm not going to be available. Just outside in the fresh air, with a good book, swinging from my new hammock chair.
Your all take care. I will be thinking of you and your new treatments and test results and hoping for grand news when I come back to host again the beginning of September. And if anyone wants to go ahead and chat online with out me please do so. This is your site and your forum.
Hang in there ladies and 'see' you again soon.1
