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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@Stayingpositive welcome back. How are you feeling? How is your treatment progressing?
@Rad, great to have you here again. Good that you've got some timeline to work to for the vax. You should be fine with any time. My oncologist was fixated that vax is safe but best to get it when your immunity is at maximum levels. For someone in treatment that's a four day window before the start of a new cycle, but also best to have as long as possible since the last treatment. So for me, they've cancelled my Day 8 in this cycle so I have an extra week+ recovery time before my vaccination appointment. You've not be treated since January so you should be fine. That said, I always recommend, at the very least, letting your oncology team know you're booking or have booked to ensure they don't raise some red flag that might be unique to your own situation.
@Turtlegirl if you're still on hopefully you've figured out you have to refresh sometimes to see the feed of conversation. If you not, I'll private message with instructions for next time. So sorry. This platform does take some getting used to.0 -
@Fearless - Vol Mod thanks for the insight on covid vaccine, I will certainly connect with my oncology team.I did connect with the session last night, very helpful and frank discussion.
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Hi @Elsie13 welcome back and lucky you...you've had the shot and only mild reaction. That seems to be the case for most I hear from. Yes, I've noticed several provinces have reverted to the longer wait time between vaccinations. So far the jury is out on how long it is before the efficacy of the first begins to dwindle, but apparently they are watching countries like the UK who are far ahead of us in innoculations and finding the first shot effectiveness lasting far longer than originally expected. So the view is, given short supplies, its better to get more people with some still significant protection. The analogy I heard was that if you had two parents who were eligible but only two vials of vaccine, would you give each one shot to give them each some good protection, or give one the two shots and let other take their chances. And if the supply chains improve there's nothing to say they won't speed up those second doses.1
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This was taken just around the corner from my place, Montreal, March 22. Today we'll get 20Celsius.
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Also Mar. 22.
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@Elsie13 I'm an ex Montrealer too and do remember those weather switches. Here, where i am in Ontario the climate is much more moderate but still we;re seeing more dramatic swings than ever before. Right now I'm waiting for that last blast of snow and cold that usually comes just as we feel we've moved into spring.1
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Hello @Fearless - Vol Mod thank you for helping me get back on!
I had my vaccine on Saturday... I did have some side effects. Expected to because I seem to have side effects to most drugs. All is good after 2 days of a mild headache and fatigue. Nothing that a good nap and tylenol cant fix.1 -
Geez, we've been having some technical issues today. Countryliving, a regular participant, couldn't sign in and then when she was able can't see the comment thread. I think I fixed her problem in the back end but we'll see. And Turtegirl, a new member, could post but she couldn't see our comments. Wondering if she just needed to refresh the way we've all gotten used to. I'll send her a private message for next time. Hope no one else has been encountering any problems. If that's the case I'll escalate to Vanilla who manage the platform. But they are aware we have this session every week and need to stand down on any of their work that might affect our functionality. Gosh, don't ya just love technology some days !!!1
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Awesome you're back in @CountryLiving Not sure how that member category got unchecked but glad that fixed it. I'll come back to you with your question about email feed later. it's an easy fix but one you have to do. I'll send instructions. Good that your reaction to the Covid shot wasn't problematic. I have yet to have any of my friends say they had anything more than you and most almost nothing but a slightly tender arm.
Hey @tinazzie glad to see you back. Hope all is ok at your end.
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Lovely ladies, it's that time again. Great to have everyone with us today and I'm always a bit sad to sign off each week. But looking forward to the next is always something I'm grateful for. Hope you all have a wonderful week ahead.
In keeping with last nights' Speaker series session I thought I'd leave you with this thought. It resonated with me this morning.
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THURSDAY APRIL 1st gals.....WELCOME TO TODAY'S LIVE CHAT !
So, Mother Nature is giving us her April Fool here today. Last week I was driving around with the top down on the car. Right now I'm looking out the window of my library at a snow storm.
Dodged a bullet this week ladies. Apparently I was exposed to Covid,,,,WHILE GETTING CHEMO ON THE 24TH...the place I always assumed I was safe. Thankfully no symptoms...although interesting that those they tell you to monitor for virtually mirror the side effects of chemo. Had the requested test yesterday and just got my results...NEGATIVE! Whew! So I can continue my plans to get my first Pfizer shot on Monday and my chemo, with the new and improved protocol, on Wednesday.
I understand Jennifer de Wit Turner's interactive follow up, on Monday, to her presentation on Hope last week was well attended. If any of you participated I'd love to hear your feedback. And do mark your calendars for her next presentation on April 21. I've provided details in a new Discussion topic announcement. Definitely a tough topic of some but one that we really need to be able to address.A quick ask.....OCC are looking to put together a video collage/montage of survivors/caregivers/family members saying Thank You to OCC. This is intended to celebrate World Ovarian Cancer day next month. It can be thank you for a specific program/support/anything really in a quick 10 second video or a photo holding up a thank you sign. Send to Tracy Kolwich (tkolwich@ovariancanada.org) or reach out to her directly if you have any questions.
Well, it's 1pm How are you today? What's new...anything we can help with? How are you celebrating the long weekend...Easter, Passover or just the coming of a new season plans? Anyone have any good April Fools' jokes played on them today? LET"S GET STARTED.....
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@Fearless - Vol Mod, another roller coaster for you, covid scare during chemo...yikes! Do glad test was negative. Very poor April fools joke!0
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@Readersmaven I couldn't agree with you more. The worst would have been a positive result today...I'd have been calling ot ask if it was legit or was it an April Fool's joke. Glad to have you here today. How are you? Anything new?
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Hi Fearless and Readersmaven!0
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@readersmaven and @Fearless - Vol Mod glad to hear your covid test has come back negative. Nothing new for me ,still at home since chemo started ,hopefully I can get the vaccine soon so I can return to work.0
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@Fearless - Vol Mod, I'm OK...I will be having radiation next week, however bit of a change in plan. Radiation oncologist got a second opinion on my recent scan and after a deeper analysis, 2 additional spots were discovered. One on spleen and another on uterus (surgeon could remove during debulking due to complications).
Fortunately they are extremely small, so I've decided to wait for a bit to return to chemo as I have no symptoms except for pain from lymph nodes, site to be radiated. Discussed this with oncologist and she feels we can wait. I am scheduled for another scan early June and of course if I decided not to wait for chemo, can restart at any time. This is the one step forward, two steps back with this disease!0 -
Hi @Rad! I registered for covid shot, now we wait, but that's something we're good at....right!0
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I've been on a wild ride this past month.
Recall a CT in Nov confirmed enlarged pelvic lymph nodes, I was trying to get into a trial in Jan. The trial investigation showed I am positive for another cancer called Multiple Myeloma, needless to say I could not join the trial and so went into treatment of weekly taxol and biweekly Avastin. Meanwhile I had to have a PET scan as part of the assessment for the MM. The results showed no cancer anywhere, not in bones, yay! AND not in lymph nodes (whaaat?!) What followed was a flurry of meetings with hematologists, my gyni onc and an endocrinologist because my thyroid did light up on the PET. Long story short, I am off chemo, it is suspected now that the lymph nodes never were malignant, not starting treatment for MM because it is in a pre-cancerous state, but am now taking thyroid meds as my TSH is below normal.
What a whirlwind of shock and astonishment, but I'll take it, CA125 as of 2 weeks ago is 8.
Never give up hope ladies, miracles do happen!0 -
@Rad glad to have you with us again this week. Even happier to hear nothing new....with us, that's usually good news! And yes, for a multitude of reasons I hope all of our sisters qualify for the vaccine sooner rather than later. It's frustrating to see that those of us in treatment are so low down on the eligibility lists. I got my appointment on a technicality here in Ontario, although I now qualify anyway since they dropped the age to 70+. Delighted to have been able to get my husband an appointment for end of next week so we'll both have some level of extra protection shortly.1
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@BeamBlossom... what a up and down journey, however sounds ultimately positive if I'm sure nerve wracking! Hopefully you'll get some time to relax and enjoy good weather days ahead.0
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@Readersmaven - yes, its been quite a shock really, but wonderful news for me. I am on watch and wait now. My gyni onc is just as shcoked, this might mean my frontline worked and I am not carbo resistance, which has big implications.0
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Wow @BeamBlossom what a busy time you have had happy to hear everything worked out.@readersmaven hang in their and stay positive.0
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@BeamBlossom I am soooooo happy for you. Nothing like a screw up that works to one's advantage. You've gone from doom and gloom in your prognosis to doing a happy dance..and wow...a CA of 8. You can't ask for better and truly a miracle compared to where you were last time we spoke. This should help others see that you just can't give up. Thank you for sharing this great news.
@Readersmaven I get the one step forward, two back. So frustrating sometimes isn't it. I think that's why I just stopped looking ahead and I just manage in the moment or at least day to day. I do hope the radiation works....the rest you can deal with when needed. But I admire how well you're taking the constant shifts in priorities and information. All you gals are so resilient.
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We had a dusting of snow overnight in Montreal, @Fearless - Vol Mod. So glad you don't have Covid!
My Pfizer-Covid vaccination was 8 days ago. For the past three days, I have been feeling very sleepy, but I don't know if that's from the vaccination, or the change in weather. We had one day last week when it was 21 Celsius, and of course the temperatures have dropped off quite a bit.
@BeamBlossom, yes, your mind must be in a whirlwind for sure, the MM diagnosis, tests and treatments! Hope things will calm down.1 -
BTW...I listened in on Jennifer's session on Monday. It was interesting to hear from others. I find that I gain perspective from hearing what others have or are facing and always learn something.
I very much looking forward to her next session, as you say @Fearless - Vol Mod tough topic but needed.0 -
@Readersmaven I'm all for waiting, my very first CT showed a small spot on my liver, during debulking Dr examined my liver and found nothing. Subsequent scans the small spot still shows up, but has never changed in size so is assumed benign. I think it is a spot of dust on their camera lens!3
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Hi @Elsie13 great to see you again today. I do think this weather is the storm before the calm. Just hoping it is the last one. It's not that this winter has been particularly brutal but I'm so tired of the dull gray days and damp cold that we get here. And now we, in Ontario, are slated to go into a new lockdown this weekend for a month. It would be, at the least, wonderful to have some nice weather to get out and walk...or just go for a wee drive. For the first time I think I can truly say I'm Covid fatigued.
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Thx @BeamBlossom I thought about the options, a lot, and decided not to jump right back into chemo. Obviously the initial reaction is kill the beast, but if it's slow moving (only has grown by mm since last November), id line to push it off and who knows....might even be able to play golf this summer!
It's a hard decision and my husband was concerned but we are ok with it for now and as I mentioned, I can change my mind at any time by just picking up the phone.1 -
I'm covid vaccine news fatigued, lately I've heard that an immunized person can still pass the virus on to others, makes it feel like vaccinating everyone isn't really going to change things much if that is the case. I have an appt for vaccine on Monday, but because of the MM, it may not work for me, there may not be enough strength in my immune system to initiate a response.0
