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).
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Options
Comments
-
@Bojenka if not for the OC Canada weekend seminars in Nov? 2020… I would not have know about Zejula (parpi). And that I could qualify. It was not offered to me when my chemo ended, and it is time sensitive to start it (within 8 weeks or maybe 6 weeks) after last chemo. I had to ask about it and ask dr to find out)2
-
@Taita do you recall where the video is supposed to be. They're usually filed with the other videos on the OCC site under Education and Support Videos but the most recent there is the one from the April session on Sexuality.0
-
Thank you Taita and ToughAsTeal I find it a great support to know what others are going through. I find my visits with my oncologist frustrating. Would like to switch and go to PMH but is that possible?0
-
@Fearless - Vol Mod
Apologies. I just re read the tweet it says coming soon! That’s what I get for reading it too early in the morning. Ha ha! Not to mention my eyes have not corrected from the clinical trial and have gotten worse. Can’t watch TV anymore or read a sign in a grocery store. It is better outside but soooo frustrating. Hopefully resolved soon!0 -
@ToughAsTeal
That's an important take away from the session and today's chat, that' being the importance of keeping yourself informed and asking questions. Many of these treatments are out there but available as trial drugs only so if your cancer centre is not involved in a particular trial the oncologists would likely not know about that use. Huge difference between treatments in trial and treatments that have been approved for clinical use. ToughAsTeal you're a perfect example of the importance of advocating for yourself.3 -
@Bojenka what is it that you feel your oncologist can't satisfy for you? Sometimes the grass isn't much greener if you were to switch.0
-
@Fearless - Vol Mod @ToughAsTeal
I'm finding OCC so helpful for this. They 'map out' or point to potential areas of work like clinical trials from which we can start to look for more information or begin to ask questions. I would not have known what to ask if it weren't for the webinars and this forum .1 -
@mjmck21 I totally agree. I find huge benefit in the information they provide that enables me to prepare for my oncology meetings. I go armed with questions and even find on occasion I'm educating my doctors. But we are so fortunate to have OCC arming us with the knowledge we need to advocate for ourselves.3
-
@Bojenka I was at my local (smallish town hospital) for my standard of care treatment after I became platinum resistant I told my Oncologist before we started treatment that I was interested in a trial. She sent an email “downtown” as she calls it that day (Friday). Tuesday I had a call from PMH for an appointment the next week. Turns out after my work up I didn’t qualify for the trial they were thinking of so I went back and did Caelyx locally. After 5 months I had progressed and I said “I am still interested in a trial”. My local Oncologist again sent a note. Same scenario but this time I was successful and was in it for 8 months of excellent quality of life and 35 percent shrinkage. Had progression last month, back locally. A bit of a roller coaster but don’t give up!!2
-
@Bojenka do you feel comfortable telling your oncology team that you are frustrated with communication? Ask them, what can “we” do to improve it together? Side note, I just switch my care to regional centre. I ensured that, I could always return my care back to Juravinski if needed. But I switched because of frequency of treatment and wanted to spend more time at home/doing things and less time on highway! Was glad I had the option.1
-
Ladies, I have to sign off a bit early today but please continue your chat if you're so inclined. It's wonderful the session last night has generated much discussion. I'm now really excited to listen to the video, and @Taita, no worries about misreading the tweet. My vision is reasonably ok but for me my brain seems to have become a much slower processor of information so I have to reread things several times to get the message right.
Topics like last night seem to have really resonated with all of you. Happy to pass on any other topics that might generate the same level of interest and discussion or even a recommendation to update this one or portions of it on a regular basis. Just let me know what I can pass on to OCC for you.
Have a good week everyone. I'll be back with you again next week. In the meantime, stay well.
1 -
Last takeaway before I sign off is… from yesterday was dispelling the myth that a trial is last option. That is how I have been feeling… but not anymore.2
-
Have a great week everyone. And keep moving forward 🌻0
-
I just read the chat comments. I attended the 3 day Ovarian Cancer Research conference in Ottawa at the end of May in my role as a "patient partner" with OCC. Some of your questions came up at the conference. I enquired once about immunotherapy for OC and was just told it doesn't apply to ovarian cancer. No other info given. Well at the conference they talked about why (ovarian cancer tumors have an immunosuppressant environment that blocks immunotherapy benefits) and several research teams are studying what mechanism is at play and how they could take that mechanism out of play so it would work. So, they're working on it, which was so great to hear! Also they are starting to try treatments that do not include chemotherapy. All the ovarian cancer patients at my table where cheering about that. They are initially trying it on patients who are chemotherapy resistant. So far it seems to involve combining several less aggressive treatments that cumulatively are showing some promising results. Actually, several other research teams seem to be trying this multiple prone approach as well, as a follow up to chemo. In general, I was extremely impressed at how collegial the approach was for all researchers. It made me very hopeful.
On another note OCC is about to come out with Clinical Trial information for patients. As a patient partner I was asked to review it to give the patient perspective. It will actually covered what to do if your doctor was uninterested in helping you access clinical trials. It gives you links to other sources. I believe this is coming out very soon.4 -
HOWDY ALL, ON THURSDAY JUNE 16. AND WELCOME TO TODAY'S LIVE ONLINE CHAT.
My I'm feeling chipper today. Probably a combination of factors,....my BP has finally regularized and I got my Avastin treatment yesterday, and I'm still flying high from the huge dose of anxiety meds they gave me so my BP would stabilize in a normal range.
Haven't noticed anything major as the mask mandates lift. Still a mix, some using masks, some forgoing. Most hospitals and doctors offices have opted to enforce masks still....a good thing I think. People going back to natural touching...hand shakes, hugs etc. Also noted yesterday our chemo room has reopened to visitors. Our new normal is slowly starting to look much like the old normal...with exceptions.Time to see who's out there today. It's coming up on 1PM so say hello....introduce yourself.....what would you like to share today?....any pearls of wisdom for those who many be feeling extra anxious today? OVER TO YOU......
1 -
Hello, it’s Bojenka here. So glad to hear about your BP under control and your treatment. I too look forward to my treatments. I call it my necessary evil. Had bloodwork done yesterday and a good visit with the oncologist. I asked about clinical trials and he is happy to recommend me once I am finished with chemo. My treatment will be on Monday that is if the neurofil level goes up. It was down yesterday.1
-
@Bojenka welcome today. Great that your oncologist will connect with the clinical trial community when the time is right. I do hope your neutrofil level rises enough by Monday. I'd think if he was overly concerned it wouldn't he'd have prescribed something to boost it. I'm sure you'll be where you need to be by then.0
-
Not yet @Bojenka I was so caught up getting ready for chemo and a number of other chores that I haven't listened to it yet. I did see the link is up and available now though. I'll probably set some time aside this weekend.0
-
Is your chemo every 3 weeks as well ?0
-
@bojenka are you having the same gorgeous weather where you are that I'm having here? Sun shining, on the verge of hot but with a light breeze....gorgeous.0
-
My chemo is twice a month. Day 1 is the combination of Caelyx and Avastin over about 2 hours and then on Day 15 just a treatment of Avastin only. Then two weeks rest before the next cycle begins.0
-
I expect the weather is working against us today and most of our gals are out enjoying it.1
-
Yes it would seem that so far it’s just two of us. I will need to sign off early today. Our local cancer society has once a month zoom meeting for OVC support group. It’s interesting how a lot of support groups I am interested are always on Thursdays. So hopefully until next Thursday. Hope you have a good week.1
-
How wonderful you have a local group as well. Do enjoy your time with them and hopefully see you back here again as well. All the best for now Bojenka.0
-
Hapoy Thursday... just waking from zzzzzzz. Chemo yesterday. Not feeling the best.0
