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!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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Happy New Year everyone. So happy to celebrate 2022!! 🥂1
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Well dear friends, thanks for joining in today. So happy to hear how many are doing well. And for those with continuing challenges may the new year bring relief. As for questions about CT scans and CA125 results I was just thinking we should be like the old Weight Watcher days and have to report current status each time we show up for a live chat, LOL. Seriously though, I think Taita has it right.....equal to the results is that you feel good.
Tomorrow night, let's all do what we do when we finish chemo....ring that bell. We made it one more year....and if we can to do that, we can do it for more.
Happy New Year ladies. See you all in 2022.
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Happy new year to everyone and let's hope for a better 2032.0
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Happy New Year to all you lovely ladies. Wishing you strength, peace, happiness and all good things in 2022:)0
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HAPPY NEW YEAR EVERYONE! Thursday, JANUARY 6 and our first online chat for 2022. Wow, where do we begin......
First of all, despite the continuing challenges of Covid, I hope everyone had a great holiday season. For those who might of had to adjust plans to gather with family and friends, do tell us how creative you got to still make the celebrations a joyous occasion for everyone.
How is everyone starting off the year with their health....treatment or recovery. Let's use that as a benchmark to celebrate your improvement at the end of the year. Yah, already looking forward a year and, in fact, semi planning Christmas for my family in December 23.
Finally. each province has been trying to manage this new variant /5th wave called Omicron in their own way. The biggest concern for us, as cancer patients, is any impact to services that they might deem non-essential because of strain on beds and medical personnel. I would have expected us never to be deemed non-essential but in a recent TV interview a gal was profiled who had just been diagnosed with endometrial cancer here in Ontario and her surgery has now been postponed. Ouch. I would not have expected to hear that and I do hope no one in our community is affected by delays tests and treatments so critical to our health and wellbeing.
IMMEDIATE ANNOUNCEMENTS
OCC will be restarting both their monthly Speaker Series and the Teal Teas.- Put a placeholder in your calendar for January 29, the first Speaker Series session for this year and focused on a topic that is a constant that most of us dwell on.....fear of recurrence. More detail to follow along with registration link will be posted on the Discussion Topic SPEAKER SERIES or on the OCC website under the EVENTS tab.
- Teal Teas the OCC monthly chat sessions on the Zoom platform, are up and running again starting this month. Usually held the last Tues, Wed and Thurs of the month, this month they are scheduled a week earlier to accommodate scheduling for the Speaker session. Link to register to participate and updated schedules are posted the TEAL TEAs Discussion Thread or can be sourced on the OCC website also under EVENTS.
- TEAL THURSDAYS, this weekly online chat will continue. We really ended the year with great participation. A reminder these sessions are open to anyone who wants to join in. Some attend regularly, some just as the need to engage arises. Some just view the discussion later on to catch up on what's top of mind or any new develops or celebrations. Whatever suits you is fine. All are welcome, and to participate at your own comfort level.
- Stay tuned on some changes to administering this site. It continues to remain a peer to peer support group for which I will continue to moderate and to host the weekly Teal Thursday. But we have a new name and model for the group that support me and you. Now called Peer Support Volunteers we are a small but mighty group. I'll be posting that information in the next few days along with a call out for more volunteers.
And now, without further ado, WELCOME TO ALL TODAY.....say hello, let us know what's on your mind, if you're new tell us a wee bit about yourself....and by the way ladies, if we can make improvements to this chat please always feel free to make those suggestions, here or to me in private message. Let's get started.......
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hello and happy 2022! Re omicron... i think those pop up test kits in ontario could have been managed differently/better. I understand they are completely accurate, but, me, others, elderly..cant wait in a massive line in cold to get kit. I wish it was distributed in another way.@Fearless - Vol Mod cherished your visit, and got through the airport departure ok?
I was bawling and daughter only gone home to London! CT scan is today. They will hopefully find vein for contrast dye. Cant use my power port because nurse leaves at 430. My appt is at 8pm.Most side effects have settled. Most fun is i have no fingerprints! (Discovered when i couldn't open ipad, must opt to use my code!). Great twist for a crime writer - whodunnit - why they couldn't find suspect fingerprints!0 -
Happy Thursday everyone! Well the New Year is well on its way and looking forward to a positive 2022!! On that note, my CT Scan results came in in record time (less than 24 hours) and on December 30th we celebrated "stable" disease. YAY!! Better news is that the tumours they are watching for the study either shrank or stayed the same so we are on the right track. The other good news is if all goes well I will be able to take time off to go to Italy with my family the end of June. (the duration is still not defined but it will be two to three weeks) Happy Dance!!! The only negative is that my CA125 went from 56 to 62 but of course that has to be put into perspective given where it was three months ago!0
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@Taita absolutely great news to start the new year! Tutti va bene Bella!1
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@ToughAsTeal so happy to hear the side effects have cleared up. Too funny about the fingerprints though. Have you tried resetting your fingerprint for the ipad usinig the new finger tip? But hoping that awful time with you feet has settled to the extent your mobility is no longer impacted so badly. I just had Day1 Cycle 3 yesterday and last night noticed what looked sort of like a blood blister on the top of my baby toe left foot and all I could think of was you and what you'd been through. Slathered the good old Udderly cream before bed and it had subsided a bit overnight and so far nothing else has popped up. Just hope it stays that way. But weird BP. My prechemo check had me at 198/96 twice. Thankfully they came back a half hour later and it was 156/89 so they approved my Caelyx Avastin yesterday rather than holding the Avastin. Then pre chemo my BP did the same thing. So two chemo nurses decided they'd fix me up....tilted my chair back, elevated the foot rest, turned down the lights, gave me a gingerale to sip, turned on the spa music and had me just close my eyes and think happy thoughts. I though I was in first class on a plane. But it worked and my BP was just fine again. But I've been put back on a mild BP med now, which I probably needed anyway. So I'll monitor from home to be on the safe side. Good news though...my CA125 is down another 600 points to 2200 from 2800 3wks ago...so going in the right direction given I was at 7500 when they started this regimen end of November.
Yah, just held the flood of tears as he walked into the airport to catch his flight. But he'll be back in April and despite Covid we still made some wonderful memories. But I ordered online and paid for a box of Rapid Test kits. When Ontario announced the free ones, I just saw another distribution debacle like the vaccines and wanted to ensure I had some. They are almost 100% for a negative, but loaded with false postives. But better than nothing if you want to ensure a visitor is ok or you are. So many are asymptomatic now.1 -
@Fearless - Vol Modi think that is maybe what I should do too - buy online.1
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@Taita what wonderful news. That trial truly has been a miracle for you. That's why I never give up hope and I hope your situation helps to inspire others to feel the same. And what a great trip to look forward to. As for your CA, you're right about perspective and a jump of 8 points is nothing to concern about. When it's doubling and that continues as a trend, then that's to be concerned about. But the CA is a volatile test at the best of times so I'd look at that as really more reflecting your stable CT. You got this gal....definitely a reason to ring in the new year!
And @ToughAsTeal forgot to say...good luck with your CT today. HOpefully you'll have results by next week and we an have a reason to celebrate with you as we are with Taita today.1 -
@Fearless - Vol Mod
Amazing what a little "ZEN" can do!! We think we are relaxed until that BP cuff comes out !
@ToughAsTeal glad to hear your symptoms have settled down! We had rapid tests for Christmas for our kids and grandkids so the 9 of us could be together. We ordered them too. Of course small town Ontario got nothing and even in the cities it was crazy. Such a messed up plan. I suggested that they give them out to everyone who came in and got vaccinated. That would have made more sense IMHO! Now it is a bit of a free for all. No reporting, we can't even access PCR tests anymore, just LTC residents I believe. So other than going to the hospital or Life Labs and visiting my baby granddaughter across the road I stay pretty close to home. Not much else we can do. I too know of someone who has cancer and has just had their surgery postponed. It sooo not logical!
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@ToughAsTeal
I used Rapid Trace & Test Canada. Box of 5 $58 + $20 for shipping. If they have in-stock (since I hear even these distributors are hard pressed for product now) I got them in 4 days.0 -
@Fearless - Vol Modthankyou i wasnt sure if ok to ask where you got them! I have cra on my phone now re dads estate so multitasking is kapput! Have a great week all and will share my results next week0
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Have a good week everyone! Stay well and stay safe! 0
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Well ladies, time to sign off for another week.
@Rad thanks for checking in and happy new year to you too.
@Taita and @ToughAsTeal continue with the good news. I guess this was quite a celebratory chat today for all of us.
And to send everyone off with a sweet image, here's my surprise Christmas gift from my husband. Meet Ridley and Digger, male Brittany spaniels born November 13. Just picked them up this morning and we're already totally in love, notwithstanding they had us wrapped around their little paws in 2 seconds flat.
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@Fearless - Vol Mod They are adorable! What a beautiful gift and I know they will bring you such joy! They do look like they have settled in just fine..
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THURSDAY JANUARY 13 AND WELCOME TO OUR 2ND ONLINE LIVE CHAT OF THE NEW YEAR.
ANNOUNCEMENTS/REMINDERS- Monthly Teal Teas (Zoom Platform) are up and running again next week (all three) next week. To access more information and register to participate go to: https://ovariancanada.org/Events/Find-Local-Events
- The Speaker series session (Fear of Recurrence) scheduled for January 26th has been postponed until March. However, it's being replaced with another excellent topic "Getting to Know Your Oncology Pharmacist". I'll add some detail under the Discussion topic in OVd and when available, the link to register in the same spot. You can also access the information at https://ovariancanada.org/Events/Find-Local-Events. It will be posted there when all information is finalized.
Now then, it is 1PM and ready to get started so anyone out there who's joining us today, say hello.
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Hi Fearless!
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Hey @BeamBlossom Happy new year gal. How are you doing?0
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Happy Thursday! @Fearless - Vol Mod and all those joining us! I agree, I am done with winter. Treatments are still going well, have a bit of dizziness and my blood pressure is being wonky but all in all good! Have any of you had issues with vertigo while on treatment?
I would love to go somewhere warm but with Covid I am so hesitant to travel anywhere that is warm. Hopefully soon things will settle down. I understand that you can get standard treatments in other provinces and indeed in other countries. There is a cost of course and that depends on what your treatment is. When I was on Caelyx I checked into BC and OHIP would support part of it, but when Covid came back I didn't pursue it any further.
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Pretty good, got some good news yesterday, all the news mets to bones along with a stubborn lymph node can be radiated. Im going Monday for a biopsy, 3 more MRIs next week and then will wait for the radiation schedule. I will have one more Caelyx Jan 26 and then another CT before we give up on it. My Avastin has been discontinued since mid December because of the upcoming biopsy.0
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With omicron, I don't travel anywhere, totally housebound. One thing the average person doesn't think of it that if I were to catch it, aside from how unwell I might be, there is the impact to my upcoming biopsy which would be rescheduled and that would further delay resumption of the Avastin treatments. I don't want to chance that.1
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@taita, it's so amazing how well you've responded in the trial. Thanks for the thoughts on travel. My son in law lives in Tampa and that sounds mighty appealing right now. MIght just look into possibilities to pick up my treatment down there. They have a major cancer centre close to him. Wonder what costs might be though.
And @BeamBlossom that is great news about the radiation. Hopefully this round of Caelyx will show some responsiveness and it will still be a viable treatment for you as needed. While it had immediate effect on me it seems, generally I hear it takes several sessions before any impact becomes visible. With the Avastin discontinued does that mean you can't pick it up again if it was appropriate. I still totally confused on all the strange rules around Avastin. I just came out of a call with OCC and have asked them if they can provide better explanations than I've received around the use of Avastin
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@Fearless - I believe Avastin costs 8-10K per treatment, which would make it a very expensive trip to Tampa. My current situation is an interruption in treatment, I expect the Avastin to resume at the end of the month. I have heard about the delayed impact from Caelyx as well, although my onc explained that early on it should show stability and no progression if it is working.0
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Hello all! Everyone sounds busy busy with being in. "Moving forward" status! So nice to have answers (or know answers are coming). My in person appointment yesterday and chemo today were cancelled because our son who lives with us tested positive. My husband and I did rapid and we are both neg. Zach has moved until neg to live with his birth family, who all were positive. We believe it was with them he picked it up. Grateful they made room for him. They are all managing feeling well. For me, juravinski told me i isolate for 10 days. On day 7 they bring me in for PCR? Test. If negative, i have appointment with dr the following week and back in chemo for next 3 months. Which brings me to wonderful news that my tumours all responded shrank with the caelyx/avastin...one by more than 50%. I am still managing hand/foot issues and general skin issues. The severity of my side effects will be reviewed at my dr appointment. May just reduce the amount of caelyx. Have a weather headache today!1
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@Taita - will there come a point when you will be released from the trial? Or does the treatment go on as long as it is beneficial to you?
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@Taita you asked about dizziness/vertigo. From what I've heard it seems fairly common during treatment but at different levels. A few gals have reported fairly extreme vertigo, to the extent it's truly affected their daily activities to what I used to get which was just a case of "sea legs" from time to time...that feeing like the floor was moving a bit when I was standing still. But so far no one has mentioned to me that it hasn't cleared up over time. If you have it, one thing to consider is your level of hydration. When I was hospitalized a month ago for it I had no idea how underhydrated I was. I drank what I thought as enough fluid daily. But it took them 2 days on saline to increase my levels to normal. Lack of hydration can definitely cause dizziness. So can your BP if its not stable. Do make sure your cancer care team are aware. Ensure you add it to your daily log so they can track when it occurs or what you might be doing that triggers it.
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@ToughAsTeal - Glad to hear about your positive results! I know another gal being treated at Juravinski and they are being very Covid sensitive there, apparently 1/3 of support and nursing staff is off sick. I hope your son recovers quickly and without incident.1
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@ToughAsTeal Lots of news from you today but the best is your response to the Caelyx Avastin. I'm doing a happy dance for you. And you've given me hope my CT result on the 25th will be similar. Now to get those nasty side effects for you. So far I"m still ok on that front. No mouth sores, no foot or hand rashes or sores. (oh forgot to knock on wood....which I'm doing right now).
But wow sorry to hear about your son. I do hope he recovers easily but also that you and your husband remain negative.2
