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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Happy Chilly Thursday in south west Ont.
I just got home from getting a walker. This one will be partially covered through Assisted Device program. My current walker is a rental. I chose a deep cherry red colour.
I am still struggling with pelvic floor/bladder and other discharge frequency/pain. Sleep a lot, take hydromorphone for pain. Ostomy is now part of my life.
@Eileen glad the port process went well. The new treatment, I am not familiar with. Will be interesting to follow you through this.@Fearless_Moderator Radiation… you are first to go through that door among us? My only recollection from some friends and family was the skin needing extra attention. But is this going to be like chemo, where it is different for everyone?0 -
@eileen it's always something to cheer about when your CA125 is going down, no matter how much. Actually you don't normally get as dramatic a drop with Gem as you do with some of the other chemo drugs. It's just a good old steady Eddy. And really it's not the amount you drop, it's really that you are trending down over time. So hope you keep it up gal.0
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Oh yes same here sometimes i get a huge bruise it wpuld take like over a month to go away and yes sometimes not a bruise. But those bumps ues ive noticed them too some times i still have like 2 on my left side that developed from the shots last month. I find my stimach gets a bit sore from them. I inject slowly so thats helps i find. Sucks i had to rego on them after they found that blood clot in where they removed my left ovary. They kept seeing issue their with ct scans but they were not sure if it was scar tissue until last ct. They spotted it so yes back on blood thinner for 3 to 6 month.0
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Hey there @ToughAsTeal, I was just thinking of you and you popped in. Hmmm, new side effect...we're now psychic LOL. Cherry red walker, eh? I assume that's the sports model LOL. Seriously, I'm getting close to needing one myself if this radiation doesn't work. They think removing the nodule will release pressure on the muscle that controls your range of motion and might allow some nerve damage to reverse. If not at least we tried and just one more thing to learn to live with . Sorry about the pelvic floor/bladder issues. Can they do anything for you?0
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Hi @ToughAsTeal oh no sorry to hear your still having a rough go of it. So glad you were able to get a walker though. Out here all you have to do is get a referral to the red cross and it is fully covered. Im not sure if you have that out their.0
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Gals, I'm starting to think we should be collecting up a list of things we can get free or subsidized. Perhaps mention to OCC for one of their info sessions. I just found out someo of us may qualify for the Federal Disability Tax Credit and that here in Ontario, my husband qualifies for EI as my caregiver for 15 weeks since he left his job early this year to be home with me more. Need to research this all much better given I'm also getting to the state where I can't always "do it myself". Just wish I could find a magic and free wand for housecleaning!!!!!0
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@Fearless_Moderator when I saw the red walker my first though was it matched my daughters kitchen aid mixer! Only suggestion so far is doing kagals(sp?) I found a new clinic with a location in Waterloo that can “fix” pelvic floor by sitting on a machine that replicates 12000 kagals or something like that. It’s also in the $2000 treatment price range. So.. that’s a no for me!My issue seems to be related to the buildup of pressure beyond sigmoid colon (where my tumour is). The body continues to produce mucous that would normally be added to stool to help a bm come out. The mucous builds up and the pressure builds… and it’s not like a bm that you can control or have peristalsis kick in. The pressure is my pain.0
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I myself am having a bit of concern with my kidney function. My egfr is dropping that last 3 months. Its now like at 64. My urine test came back all good i am having a ultrasound to check on my kidneys. I read on the kidney foundation that mentions tour kidney function does decrease with age over time as you get older like 5 to 6 yrs. But they say if it drops dramatically over a few months i could indicate acute kidney injury and to find out the cause of ut. Right now my oncologist said she isnt too worried right now still above 60. But it was 71 last month. My creatine is also slowly creeping up to 88 thats another factor they look at. It 2 points away from being high. I pushed to get a ultradound down. Because i want to figure out the issue before it gets worse and i start having issues.
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Oh no @ToughAsTeal you figure since they put the tube in they would have other means of helping with that mucus build up. Is their any chance they can remove thst tumor???0
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Checked into disability tax credit here u have to be going through like treatments 3 times a week here to get it. For bc anyway.2
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@ToughasTeal that sounds so uncomfortable. I noticed a chiropractor's sign down the road that says he specializes in pelvic floor issues. I'll try to remember to call to find out what his program is for you in case it's affordable. Do know what yoy mean though. Everything seems to have a cost attached that for many of us is not reachable. I do have the bonus of a corporate benefits plan I was able to keep when I retired but it has a $100,000 max and I'd like to ensure there's some left over for my husband after I'm gone. I do think we are fairly lucky here in Ontario...so much is covered for us especially once you reach 65.
Oh, forgot to mention going for my 5th Covid next week...the new bivalent booster.0 -
@Eileen, you're wise to anticipate issues and try to avoid them at early stages but some times one can research too much. For example your creatanine level. If I can get mine to 85 I'd be ecstatic. Mine is always in the 90's and the only time I was considered at risk was when it hit 143, and even then it was just hydration needed to fix it. That's when I did learn about ensuring I was adequately hydrated and since then I've stabiized. Do try to take your lead from your onoclogist. Use things like google to inform for question to her/him but be careful about trying to interpret what you read and let it worry you or as fuel to act on. And do ensure you consider the source. There's lots of misinformation out there on the net. That said, it's good that you do advocate for yourself and are asking those questions.0
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Yeah thats one good thing i agree. But unfortunately im not even close to being 65. Lol and being forced into retirement early without much saved is another issue fir me. My kids were able when i first started chemo they set up a go fund me account. Thanks to family and friends it so helped pay for my trip to vancouver for hotel etc meals and a chaperon. My last few jobs didnt have retirment plans let alone insurance covereage for their workers. Which was a bumer. But my kids live here in town so they help with things i cannot do if needed.0
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@Fearless_Moderator @ToughAsTeal @Eileen
Hello all.
Sorry I missed the chat, my neighbour is back and we went for a walk and I got my "venting" out. She has been gone for a month and I had been waiting for her to return.
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Ladies, sorry to say it's atter 2 and my husband is throwing subtle hints about lunch LOL. Take care and hope to see you again next week. Tough....I can picture you bombing around the neighborhood on your new wheels this week. Elaine, stay strong. That Gem is always slower to kick in than other drugs but for me it was very effective.
Until next week.......ciao.
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@Eileen some mucous discharge is normal after ostomy surgery. Mine just appears to be a lot and if I had a stronger pelvic floor I wouldn’t be experiencing it to same extreme I guess? There are just no lady parts in me anymore (which would have also supported bladder), and now messing with colon, it’s another thing that would affect bladder.@Fearless_Moderator I agree about gathering info tax breaks, grants etc
well after 2pm… have a great week😀0 -
Yes i will wow your creatin is high. Yes i went by the kidney foundation. But your so right i do tend to read alot. But my oncologist is impressed that i do look at different drugs and such. And she is glad i ask alot of questions. But yes ive learned only repetiple sites. Like journals reasearch to back up their claims dr names research centre where it was done. I know im always looking. If i dont see people names where reasearch is done who they came to that conclusion i dont read any further. But i guess being living by myself i dont have much other stuff other than watching tv puttering around house i do have a few painting left to finish and some drawings needed finishing. I am going to try to finish those i hope. Lolol
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Ok ladies have a great week.0
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NOVEMBER 3, 2022 AND ANOTHER TEAL THURSDAY FOR ANYONE WHO'D LIKE TO JOIN US FOR OUR WEEKLY LIVE ONLINE CHAT.
Lots of events and new support to share for this month. I've posted it all in Teal By The Month including dates and links for more information and registration where it's required. A key highlight for me is the Fall Symposium next week. Changing the dates to be evenings mid-week is sure to make it more convenient than the old weekend format. The other highlight for me is the new partnership with WellSpring and the support offerings you can access there.
Pretty happy today. It was a year ago two days ago that I was told my new prognosis was 4 to 12 months and I've beaten a timeline once again. Next week I start radiation of a nodule that's apparently pressing on my psoas muscle and causing some of the leg and hip pain that's affecting my mobility. Hopefully it works and I can get back to driving my car and taking short walks again. And after that I begin a course of Gemcitabine since the Caelyx/Avastin as started to fail me. Mixed emotions on that front but so happy my dang nose bleeds might stop. I'm getting known in the neighborhood as the lady with the cane and cotton balls stuffed up her right nostril.Well ladies, it's coming up to 1pm and time to get started. Who's with us today? Say hello and tell us what's on your mind....even if it's just the weather. Just don't tell me how well organized you are for the holidays.
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Well ladies, we're almost 25 minutes passed the hour and no one has joined today. Wow, the first time I've been alone since we started these live chats. So I will sign off for now. It's that or talk to myself for a half hour LOL.
Hope to see you join us next week. In the meantime, happy thoughts and wishing you nothing but good news in the week ahead.
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Hi, sorry for the late “pop in” and for having missed you @Fearless_Moderator!0
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Congrats and well done @Fearless_Moderator for exceeding yet another goal post!! So happy for you!
I am in treatment again for the breast cancer recurrence and have just finished my 1st Cycle. There is no relief from my back pain - found out from the last CT scan that I have 2 compression fractures in my spine, but hoping that the new treatment at least helps with progression control and shrinkage - which is the current goal.Have registered for the upcoming symposium. Interesting topics! And I agree that the new timing might work out better.Wishing all a good week!
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Congratulations @Fearless on defying that prognosis! Back in early spring my oncologist gave me the same time frame and though it was pretty rough going at first, I am so grateful for every day I have. So HURRAY YOU!!
I hope the radiation treatment resolves your leg and hip pain. I’ve had the same since the debulking surgery in 2018 and was told it was because one of the surgeons “nicked” my femoral nerve. But over the past year it seems to have gotten worse and it’s painful even when I’m sitting or lying down; kind of makes me wonder if something else (like your problem) is happening. Thank you for generously sharing all your in-depth information; it’s gotten me thinking and I plan to ask my oncologist about this when I next see her.Out here on the west coast it’s damp and gloomy today. It’s that time of year, so snuggle in with a blanket and a good book, no matter where you are in Canada, ladies, and enjoy your day0 -
Congrats @Fearless_Moderator for beating the odds. I do hope you get relief once you start radiation. Sorry to hear Caeyl and Avastan is no longer working for you. Ask if you can still do Avastan while on gem. I have it every 4 weeks. With caeylx and avastan i was told the dosage is cut in half and that why u get it every 2 weeks. But with the gem they give you the full dose at once. Well for me i got a call yesterday like 2 hrs before my chemo saying their was a mix up and i still have to go in fir blood eork even though i mentioned to her 2 different nurses checked into this for me when i was told i didnt need blood work this week as i was starting the injections to keep my wbc up. So after rechecking nope she said the pharmacist at the chemo room upstairs is requesting blood prior to my 2pm. Ok fine go in get the blood done. The nurse brings me in i get hooked up to saline solution while we wait. Well find out their backed up. 2 hrs later oh no my platelet count down to 93. No chemo. Here we go again. So my chemo nurse recalled me once i got home. After speaking to my oncologist she mentioned not to take the injections this week and good news is my day 8 will only be postponed and not omitted. Well thats good. Still trouble sleeping. Last night maybe 5 hr sleep. My dog decided she wanted to go outside and decided to go into kitchen sit and bark. Not just once but like 4 times. Lolol. She sleeps all day. Well she 12 now so i guess she has days off too. On other note, looking forward to the symposium myself all signed up.
Cold here today as well. It started going down to minus 3 last night. Its 0 out now at 12pm and a snowfall warning on effect they say till tonight. Brrrrrr not looking towards shoveling walkway just yet.0 -
Apologies for not joining our Thursday convos. I have an 8 week online workshop on Brain Fog during that time with https://wellspring.ca/ This is an amazing resource i wish I had known about sooner. @Fearless_ModeratorI'm continually amazed at your endurance. You give me hope as it looks like the cancer is growing in me again. Not a recurrence as it never cleared my system but I had an excellent response to carbo/taxol until July when then decided to stop due to low platelets and my CA bottomed at 58. I was put on Zejula after 10 weeks from my last chemo bc it was so hard on my red blood cells and platelets. (Note that the waiting period to start Zejula is 12 weeks not 8). Though my CA spiked from 160 to 3020 just as I started. I felt amazing throughout October for the first time in over a year and a half. Experiencing very few AEs and had more energy than I have in years. However this has changed in the last couple of weeks. CA is 3849 and I have some discomfort on my right side. I had a chest x ray yesterday and will see my oncologist today and hope for the best. She wants to give the Zejula a chance to work and it may be slowing the progression. IF not it looks like back to chemo in the next few weeks. And I was just starting to build up some muscle tone and some nice hair regrowth
Thinking of you @ToughAsTeal, @Tinazzie @Eileen and @HoldingOn
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HOPING EVERYOLNE HAD A HAPPY HALLOWEEN AND READY FOR OUR WEEKLY CHAT TODAY....THURSDAY, NOVEMBER 10 @ 1pm ET
I'm posting this early today as I'm in radiation at 11:45 and may be a little late joining the chat which starts at 1pm. So if you're there and ready at 1:00, please go ahead and say hello to each other and I'll join as soon as I can.
Remembrance Day tomorrow and our chance to honor the men and women who've served us so well and continue to do so. Does anyone or their community do anything unique to acknowledge the day?
Who attended the Symposium the past two evenings? What did you find most valuable? Anything in particular to share with the rest of us? The video of the sessions will be online for those who missed it, or perhaps missed a module or two they had been unable to attend. The Video of Day 1 is now available at:
https://www.youtube.com/watch?v=8Z7Ww7FZeuo
As soon as I get the link to Day 2 I'll post itSee you shortly ladies. At 1pm chime in with your usual hellos and tell us what's on your mind today.
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I attended both nights. Always encouraged by panel members who have had recurrences but then super long periods of remission. We all want that although seems to come down to so many variants to be in that club. Research discussion at end of day 2 solid.1
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I signed up but wasn't up to staying up to attend. I will definitely watch both days to see what occurred.
@Fearless_Moderator How is the radiation going and how are you feeling these days?
@Bobby So true about recurrences. I think it is truly wonderful for those that experience longer periods of remission. I don't fit into that category and know I am not alone there either.
What do you mean by "research discussion at end of Day 2 is solid"
I think I have just gone through a fecal impaction. I think I would prefer diarrhea. LOL
As I said to my gf "Not only can't I get my sh$t together but I can't get it out either."
Not fun at all!0 -
Attended first night and I found the Jennifer Turner group very real and helpful to me. Will watch again on YouTube.1
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Good morning. I really enjoyed what i did catch of the 2 day. Missed both first hr of both of them due to apoints and chemo but plan to rewatch them0
