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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@tinazzie I'm having another CT scan on Sunday and once I get the images and results I'm sending them to the Cleveland Clinic for a second opinion and if there's a drug that they recommend that is not available to me in Ontario I will look for it in the U.S.
It's a great option to be able to get a second opinion this way and I like the assurance that my treatment is on the best path.
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i understand both PMH and Sunnybrook do accept second opinion referrals from our province. Do you ladies have strong feelings one way or another about either of these 2? I am planning to go to Ontario - for my daughter's wedding, next month.0
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I only wish i had the opportunity to get juravinski opinion before missing our on what could have been my day 8 gemcitabine. I was emotionally blind on monday with making decision on ither options.Before sign off i want to share a fantastic fun distraction show if you have disney plus. Steve Martin/Martin Short "Only Murders in the Building".1
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@Fearless - Vol Mod. Just a quick update! On the train to Trieste having left Bologne Tiffany. Trip is amazing and I am feeling great!!0
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@Tinazzie I've not had any experience with Sunnybrook but Princess Margaret is wonderful in my books. It's staff and overall attitude is amazing. I expected a depressing experience going there but it's anything but. They've revamped the building so that it's open in the middle allowing for their live classical music on Wednesday afternoons to waft through the building. It's a spiritual feeling.2
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@Tinazzie i have no experience with either0
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@Taita so happy to hear! Looking forward to seeing more pics!1
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Thanks @Annie1950...good to know!
@ToughAsTeal - hope you soon get clarity of the best path ahead.
Hope you all have a great week.1 -
Have a good week everyone🌻1
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Yippee @Taita You just enjoy every second of that trip. And so happy you're feeling so well.
@ToughAsTeal I agree with others relative to PMH as a possible source of opinion. That was where I had my surgery and first treatment and they were remarkable. Plus real close access ot where many of the clinical trials are being managed. Perhaps a formal second opinion from there would be helpful. I take it your outreach to your former doctor at Juravinski was more "informal". But too bad you've now missed a treatment. I think you could still be put back on Gem if that's the final outcome. I missed the odd treatment because of BP problems and I was always able to just pick up and continue.
@Annie1950 hang in there. You've always had good success once you've brought in the Cleveland Clinic for support. I'm fine with the way things have been going for me but if anything goes wonky I absolutely plan to reach out to my first oncoloigst at PMH or the Cleveland Clinic or both.
\Ladies I see we're past 2:00 so will say goodbye for this week. To all of you my best wishes you find solutions to your dilemmas and you'r eall back on a steady course soon. My thoughts and best wishes to all. And Taita, keep those pictures coming!
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Sorry just missed todays talks issues sleeping. @Taita loves the pics. Glad your having a great family vacation.
@ToughAsTeal hope you get clarity as well. Its fustrating some times. I myself just had my blood work done just prior to my 5th chemo with caeylx and avastan my ca125 again has climbed another 19. So its now back at 64. My own oncologist just 4 weeks ago came back after 1 month vacation herself and i am seeing one of her team members. My feet did extremely well this time around no side effects so i really pushed for them to put my caeylx back up to full strength. I wasnt taking no for an answer. So she called me back a few hrs later after my meeting and said she spoke to my oncologist and they will support me and put it back up. Yes so i had my 5th full chemo their last monday. But what i am concerned about and i told the dr i started regetting pains back where my tumors are on my left flank. I am scheduled for my ct on the 28. Just had my first echgram yesterday.
@Annie1950 keep strong we are here for u to lean on always.
I myself am doing what i can to do my best to keep strong and psitive that having full reg will bring my ca125 levels down but if nit giod yo know their are still a few more options. Have a great week everyone.0 -
THURSDAY JULY 21 AND WELCOME TO TODAY'S ONLINE LIVE CHAT.
@Taita, Home yet or can we expect another update from your fabulous trip? Wonder if Italy is experiencing the horrific heat wave other parts of Europe seem to be plagued with.
Question for anyone who's had a CT recently and used to drinking the contrast fluid and having the dye injected for the scan. Did you get it ? I had a CT this week. Ushered right onto the machine and when I asked about the contract fluid that had't been given to me beforehand I was told there is a shortage of the dye so they're only taking that step for patients where the clearer picture is really needed. Hmmmm, "really needed"? They've really needed that clear a picture of my guts for six years and now it's not that important????? I'm really not that concerned for myself but am concerned if our disease is not considered a priority. Maybe this is just my cancer center or is it a problem in Ontario or nationally.i'll just jump into today's chat. Many of our regular members have been have some treatment challenges lately so hoping everyone is back in a good place now. Let us know how you are. Anyone new today? Welcome. Say hi and tell us a bit about you.
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Is the contrast dye the one that makes you feel warm and like you need to pee? My most recent scan was June 30. I had that injected.0
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Will add, I did not have to drink the “Redi-CT” drink.0
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Hi everyone, I'm here today for the first half hour. I had my 8th carbo/taxol treatment last Friday after a 6 week break (low platelets) and feeling pretty good for once. This may be the last and we are discussing Zejulla now since I am not BRCA1,2 positive.
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Yes, that's the dye. Did you drink the big cup of fluid first, before they infused the dye?
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So true! @Fearless - Vol Mod
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Thanks @ToughAsTeal I think I have memorized all those Zejulla threads in fact
Very helpful. I even have the GSK monograph and watched just about every webinar I can get my hands on regarding PARPi but still have lots of questions. We have some time to think about it since chemo treatments have not officially ceased. They want the CA125 to plateau... first and it was 58 last time so nearly there. Still onto a whole new chapter and happy about it.
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@mjmck21 love the word choice reference of new chapter!1
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@mjmck21 as ToughAsTeal mentions, you can go to the search box on the upper right of your home page and type in Zejula (or Niraparib, it's pharmaceutical name) or both and pull all of the conversation around the drug this past year. Sometimes those can be helpful to building any questions for your doctor as you begin deciding on using it.1
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@fearless Few new things… I have been put on a new med for blood pressure. And I have a phone appointment this Sat with a Dr in Canadian Medical Canabis to see if there is some options for me to reduce the general anxiety0
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Thanks all I need to leave for another appointment now. Have a good week everyone.
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@mjmck21 do you think they might give you one more cycle of your treatment to try to get to the magic 35 or less? I think the max is considered 9 cycles because evidence doesn't show any value beyond 9. I did the usual 6 cycles in primary treatment but both of my recurrence treatments, both platinum based, have gone a full 9 cycles each time. The current regimen, which is for platinum resistant, is already going in to 10 and hopefully much longer if it continues to be effective though.0
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They've been having a devil of a time trying to get my BP in order. For years I had mild high BP and took two drugs in combination. Irbesartan and hyrdrclorathorizide that kept my BP in the 120's /mid 80's. Then in the fall my Creatinine level skyrocketed which meant my kidneys weren't functioning properly. They diagnosed cause as dehydration and blamed the culprit on the BP meds which they said I really didn't need anyway so off the BP meds I went Then a few months ago my BP started rising. Well gal, now on the 8th med to try to lower and stabilize it with no luck. Right now I have the Irebsartin back, a beta blocker, another thorazide type drug and am taking an antianxiety med to add to the daily pile of pills. I'm told it's all trial and error to get the right mix.
I'll be interested to hear what your Cannibis doctor has to say. I almost stopped in to one of our numerous pot shops the other day to ask about products relative to relaxation and pain control. Not too keen on anything I"d have to smoke. I gave up cigarettes 10 years ago but know if I had a puff of anything I'd be right back to cigarettes. But the edibles might make some sense. I'm just surprised there has been so little research done or that our doctors never bring up the subject. Anyway let us know what your guy has to say. That might be helpful advice to large group of us.0 -
@Fearless - Vol Modthe BP med I have been put on is Chlorrhalidone. 12.5 mg/day to start and see how it goes. When I talked to my oncologist about my anxiety level she immediately prescribed 2 types of lorazepam. One was daily. Had terrible time on it. Called her nurse and they put in the request for medical canabis. I don’t want to smoke anything either. Bad enough getting that skunk smell from neighbouring backyards haha. I am hoping there is a chewable/gummie. Maybe, I can start a new category within topics?0
