Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 Peer Support Volunteer. 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).
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Hello Ladies! Well great news for me! I had my 9 month post treatment appointment with my oncologist and my CA125 is holding at 11!! All is good and still NED.0
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I'd suggest anyone in treatment or supporting someone this year has it tougher, what with the Covid restrictions. I know when I was originally diagnosed in early 2017 my husband was there with me for every appointment and procedure. Not that he wasn't afraid for me, but he was getting the information real-time and first hand and was able to ask his questions and get them answered with some immediacy. So we both felt more in control. I sure the Covid restrictions factor into how you're feeling @prayersformom.0
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@BeamBlossom I'm so sorry to hear about your mom and then to be coping with a recurrence... it's a lot.
I hope you can connect with Hopespring in January. I've found it really helps, both the yoga and meditation...good self care.0 -
@CountryLiving...happy dance for you!1
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I have asked multiple questions about draining and just put another call into the nurse so hoping they will take things into consideration. Do you think there are any downsides of draining fluid ?0
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@CountryLiving
great news. Congratulations. That sure a great Christmas gift!
@kattie666 happy to see you. How are you faring?
@Readersmaven thank you for introducing us to Hopespring. We have nothing out here in SE Ontario so I contacted their coordinator and given everything is now virtual they told me they were happy for anyone who wanted to join their forums and activities. She even gave me a list of what our gals out here might welcome and I"ve passed that along to our survivor community out here.1 -
@BeamBlossom I too attend support services at Hopespring. Myself and another lady from this group attend a weekly womans cancer support zoom meeting. They also offer a monthly ovarian support group zoom meeting. Hope to see you in the new year at one of the sessions.0
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@CountryLiving - so happy to hear your good news! Wishing you continued good results.
@prayersformom - I've never heard of any downsides to getting fluid drained1 -
@prayersformom personally I found it very helpful. I likely waited too long to have it done, oncologist said chemo would likely dry it up, but it got to be too much and the relief was immediate.
I had it drained day before my first chemo and I lost 10 lbs of fluid! For me it was wonderful, no downside.0 -
Chemo for my recurrence is set up to start next Wednesday, it will be just taxol to start with Avastin added in later. I hope I take the treatment well as I am cooking turkey for my two kids the next day.0
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Thank you ladies!!
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@prayersformom
Any procedure has some element of risk associated. But I've never heard of anyone having a problem. I've had it done twice and because my effusion was in a weird spot that needed radiology to scan real time to watch the catheter insertion mine first was more complex...and trust me...didn't feel a thing...it was over in minutes...and the immediate relief was amazing. Second time was an easier insertion for them and again, immediate relief.0 -
@prayersformom dont know if this has been suggested but having at any of your moms appointments if she can put you on video chat during the appt then you can hear first hand from the doctors and ask questions. I know of another friend who is doing that and it seems to help.0
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@CountryLiving I'm glad to hear you find the online support group helpful, I think it's great to get all the support we can and sharing ideas and strategies provides us with options we might not h as ve considered.1
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I have a meeting with Princess Margaret set for tomorrow to learn of their trails options that might be suitable for me, then I have until Monday to decide whether to do a trail or go with the taxol/avastin treatment. @Fearless - Vol Mod one of my major concerns with the trials is the delay to treatment actually starting, do you have any insight based on your experience with how long that delay might be?0
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@CountryLiving So happy to hear your news!1
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@BeamBlossom
I'll be thinking of you on Wednesday then. Hope the 'cocktail' is easy on you. I have always found 'day of' I'm fine. Day after lots of energy. It's the third day that, if there are any side effects, they hit me. So hopefully you'll be cooking your turkey on a dexamethasone high.0 -
@Fearless - Vol Mod Hi there. So glad you are seeing good results in your bloodwork. I am hanging in. I did had about 5 1/2 seconds to absorb the news of being cancer free after my Nov. 27th scan. I am trying to focus on that! However they did find fluid around my heart on that scan... My oncologist really didn't know what to make of that. After a stress filled weekend, my kidney specialist called and put me on yet another medication. He is hoping this will take care of the fluid and help with some weight loss. Every doctor I saw thought that my having "shortness of breath" was due to the low blood counts from chemo....0
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@BeamBlossom I was at Princess Margaret yesterday! I have never seen the blood lab so busy!! Love the new renovations however. But I waited 2 hours before I saw my Doctor...only to have a 5 min appointment to say all is good. I like you have a drive to get there too. Wont complain as they are an excellent facility. I talk to so many people while waiting... always positive stories. One lady has had 3 ovarian occurences and is doing well again.. another (while waiting for blood lab) man was told grim news 6 months ago and now because of immunotherapy his mass is gone! He comes from Sault Ste Marie!!1
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@BeamBlossom fingers crossed that all goes well.0
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@CountryLiving those are beautiful stories! My appointment tomorrow will be virtual, thankfully.
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@BeamBlossom the delay between agreeing to the trial and the actual administration of the treatment is dependent on a few factors. For me, when I had my scan results appointment in early January 2019 and the options were discussed with me...traditional chemo or the Olaparib Lite trial...I didn't hesitate to commit to the trial so that I could sign all the consent forms right then and there. That kicked off the next step which required a new scan....the trial required a scan that was no more than 30 days old and because of the holidays mine was now just over so I had to be rescanned. And It required PMH to pony up a sample of my stored tumor tissue to be assessed for an HRD genetic mutation. That all took about 30 days to complete. But as soon as they had the results of both and could tick off that I met all of the trial criteria I left that next meeting with my first supply of the drug0
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@CountryLiving I find it very encouraging to hear positive stories. During one of my chemo treatments a lady shared her story of being on her 5th recurrence and how she continues to fight and respond. She wad definitely an inspiration.1
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@Fearless - Vol Mod - thanks for that information. The one trial I have learned of so far is currently closed but expected to reopen mid January, although Iove the science behind this one, I'm scared to be waiting for so long to get started. I will be sure to ask at my PMH meeting tomorrow how long the delay to treatment is expected to be,1
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@Readersmaven - wow! 5 recurrences, did that lady say how long ago she was diagnosed?0
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@kattie666 hoping your new meds will work wonders!1
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I recently said to a friend that if anyone was to get this disease, better now than even 5 years ago. There have been and continue to be so many advances in treatment. It's so amazing to hear these success stories...and yes, inspiring. Especially to those of us with recurrence. Today I am so grateful the federal government committed $10,000,000 last year to OVC specific research,,,the first money ever provided from the government to our cause. Then one of the provinces in the Maritimes and one in the Prairies (hope they'll forgive me but brain fog regarding which ones) each added another million$ to the pot. Already, we have four new trials in the works, which you can read about on the OCC website. Add to that, pharmaceutical companies like AstraZeneca that manufacture Olaparib, are focused on our disease now, much more than ever before. As a result, I know I won't likely ever be cured...but I do expect to live a long and good life.3
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She said she's had one every year so 5/6 years ago. She was so upbeat, it really helped me a lot as someone who was recently diagnosed at the time.0
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Cold and blustery here.. in case I am not on next week I wish you all a Merry Christmas to those that celebrate. It will be different but we have a warm home, food and someone that loves us. Turn on some twinkling lights and listen to music and enjoy whatever the day brings. Wishing you a peaceful holiday.1
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@CountryLiving...well said! All the best to everyone, hope you have a wonderful holiday season. Looking forward to connecting with everyone soon.1
