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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Boy...that sounds promising...let's hope! No, I don't know what's happening with my blood work yet...but really don't want to chance it. I wasn't too bad with the other chemo drugs...just near the end at chemo #10 and #11 had to delay a week each. Which isn't bad considering how much chemo I had in my system!! I also had a slight decrease in chemo from about #7, which probably helped in that respect as well. Can't wait to get some blood work done to see how things are with these drugs. I expect I will be able to tell via the way my body feels when my neutrophils are low from past experience!0
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Boy...that sounds promising...let's hope!! I don't know how I am going to tolerate these drugs yet...am being overly cautious until I know. I wasn't bad on the last chemo drugs...until chemo #10/#11 - had a delay of a week for each of those. But not bad considering how chemo I had in me!0
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I told the kids that Christmas might not be a go for me given that my chemo was just prior. So, we were prepared for that eventuality. The weather forecast definitely made the decision a lot easier.0
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Sorry for the duplicates. I didn't realize the conversation had moved to the next page and couldn't find my comment...dear Lord!!0
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@GloHo yes, I was on a trial for a year and a half and was able to continue with the drug for another 4 or 5 mos before I began to progress again. It was presented to me as a option when I recurred the first time. They went through all the detail with me, including reinforcing what I'd been told with a few pages in writing. My trial was sort of unusual. I am not BRCA 1 or 2 but at the time the manufacturer of Olaparib was looking for candidates with HGSC, advanced stage, who had recurred after primary treatment and were HRT positive.. My team called PMH where my original tissue was stored and had a sample set off for testing and yes, I carry the HRT mutation in my DNA. This trial was for a drug that was known to be effective stabilizing or maintaining those post treatment who were BRCA positive. My trial was to see if non BRCA but with HRT might be positively effected. We went over all the risks, of whcih I really couldn't see much. Side effects weren't outrageous , my recurrence was really small, and we figured if we gave it three months tops we'd know if we should continue or opt out to go back into chemo without losing any traction. Lucky for me that when they began oversight my tumors began to shrink 25% of what they'd been and then after that period stabilized for almost 2 years. I was monitored once a month with blood work, review of effects with my trial coordinator, scans every two months. Finally the trial was over but because Olaparib had yet to be approved in Ontario and it was having a positive effect the pharmaceutical company agreed to provide the drug for another two years or government approval, which cam e first. Unfortunately a few months later the drug stopped working for me. The experience, for me, was entirely positive. Does that help?0
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@Fearless_Moderator
Yes...very much. I know everyone is different and there are so many different criteria to meet, etc. It's just nice to hear about experiences...especially the good ones. I was diagnosed in early 2019...so, almost 4 years ago. I was diagnosed early and the oncologist was hoping that he'd gotten it all, but did cover himself by mentioning those little microscopic buggers that you can't see! I did the first six cycles and was NED for almost 2.5 years...first recurrence was last December. I then had 11 chemo treatments and then they put me on Zejula which didn't work. So, second recurrence and diagnosed as platinum-resistant. Brings me to my current Avastin/Caelyx treatment plan.0 -
@Gloho you're history is not much different than mine other than your timeline is a bit compressed. I was diagnosed January of 2017. Like you was NED for an extended period; roughly 2 years before those little invisible buggers decided to wake up. So expecting chemo I was delighted to participate in the trial and that gave me almost two more years out of chemo. But then back to chemo after the trial....Carbo & Gemcitabine which lasted 8 cycles, a break that was to be 6 months but I began progressing again at less than three, which also left me platinum resistant so on to Caetyx/Avastin for 13 cycles and now just Gemcitabine every week for 3 consecutive weeks for each cycle. This one new so no idea if it's working other than how I feel which is great. As of January I go into 7 years in treatment, feel great and looking forward to the new possibilities that lay ahead.0
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@Fearless_Moderator
I am still trying to figure out how they got to the platinum-resistant diagnosis. The Dr explained to me, and it made sense and I thought I understood, but there is still something that keeps bothering me about it. I have a new Dr...I am going to ask her to explain it to me again. I'm pretty sure toxicity was one of the issues... Here's my rant about that: the chemo was working, my CA125 was still decreasing, the CT showed significant reduction in tumors. I was starting to get delays due to low blood counts. We started Zejula in the hopes that all would stop/stabilize. So, yes, my cancer did progress after we stopped chemo...but, it never went away or stabilized while I was on chemo. I don't know, I keep going around in circles on this one.0 -
Sorry Ladies. I slipped out to give my younger Aunt her ornament I bought for her and to shed some loving tears.
I will join in next week or if we are skipping week, all good, I will catch the next one.
Have a wonderful Christmas, enjoy what you can, make memories and love, love, love.
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@Fearless_Moderator
Congratulations on 7 years!! I keep reminding myself that I have been very fortunate (lucky) to have been diagnosed when I was and to have received treatment so quickly. I am so glad I was not part of the COVID cohort...I would have gone stir crazy not knowing when/if things were going to happen. The wonders of modern medicine...amazing!! Counting my blessings and hoping for more success (time) with this new combo.0 -
Hello hello again late. Have been awake since 130am. Knitting. Wrapping some presents. I didn’t realize it was already past 2pm0
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@Gloho thanks for joining me today. And thanks to @Strongwoman, not just for kicking off today's chat but for posting the Discussion topic that allows our members to share their feelings about the holidays in safe and non-judgemental place. I hope, during the next week, others will take advantage of the Discussion. Often writing how we feel can be very cathartic.
To everyone else, we will be back next Thursday and hoping some of you will join us to share your holiday experiences. I do wish everyone, no matter what your circumstances, can find some joy in the days ahead. Wishing you the comfort of family and friends, much laughter, great food and time spent building new memories.
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Yes next Thursday
Merry Christmas everyone0 -
@Fearless_Moderator
It's after 2:00...time to go?
I am so glad I was able to join today. I have been thinking about joining in for a few weeks now, but always missed it. I put it in my calendar today but, like you, I was out shopping and it took longer than I had anticipated (all my fault!!)
Thank you for just being there.0 -
Merry Christmas!!0
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@GloHo
Glad you could join and that you know how it works now. Enjoy and we will chat next week unless something comes up and you start a discussion before then.
Take care
@ToughAsTeal Not sleeping eh? I was experiencing that too. I am going to mention it to my Oncologist on Friday next week. We have a lot to discuss. Trying my best to put it on the back burner for now and live today.
@Fearless_Moderator
Glad you got your shopping wrapped up (no pun intended) and were able to join. I sometimes start typing my comment before the chat so that when it comes time, all I have to do is press SEND!!
TO EVERYONE!!! STAY SAFE OVER THE NEXT FEW DAYS, MAKE MEMORIES AND ENJOY WHAT YOU CAN!!!0 -
WOW THE MONTHS HAVE FLOWN BY FOR ME, WHAT ABOUT YOU? REGARDLESS, WELCOME TO DECEMBER 29 AND OUR LAST CHAT FOR THE YEAR.
Any thoughts on changes we could make to this chat forum or the site itself that would make it more user friendly for you all? All suggestions welcomed here or in private message to me any time.
How did you all fare through the storms that affected the entire country in some way while it passed from the west coast to the east. Here, where I am in south eastern Ontario we were completely snowed in. Highways were closed, malls closed, restaurants closed but I gloried in the first winter wonderland I've seen in years and lucky both my sons few in on the 21st ahead of the airport mess. Andrews luggage is still somewhere unknown and Tyler;s flight was delayed five hours but everyone and everything else made it safely.
How were the celebrations for all? I know for many it was likely a more emotional time that you've experienced in past but I do hope you were able to eke out some joy for yourself and to share with those you love whether in person or via telephone or zoom. Anything special this year you'd like to share with us?It's now going on to 1pm. I'm here and we'll get started when someone joins in whether right at 1pm or whenever they're able to say hello between now and 2. So the door is open, wipe your boots on the mat, grab a cocoa and come in to chat with me and your other Teal Sisters in a cozy chair in front of my roaring fire. All are welcome.........
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Hello hello! I get lost sometimes in the week between Christmas and New years.. what day isn’t?! What time is it? Haha. Watching lots of hockey which we enjoy especially when Canada wins
had a nice quiet Christmas with only a few minor hiccups of unexpected drop ins (despite being told by family to “please don’t drop in right now”)
the edema in my leg has reduced significantly. Am taking half the prescribed amount of diruretic and tolerating it well. Bought a great leg wedge off Amazon to keep legs propped up. Legs cramp a lot. Drinking tonic water (supposedly helps), and a magnesium pill? But I keep forgetting to take it.I bought copy of the self journal “the book of me” and my daughter and I are plugging away at it. Will do it on sticky notes before making permanent entry into book. Still knitting as well.1 -
Good Afternoon
Just got home from some errands. One included the local cheese shop....since I don't imbibe hardly anymore....cheese is my new vice! LOL
Made pastry and will make some meat pies in about an hour.
Made it through the holidays but with some tears shed. Happy tears and emotional for the gifts and presence of family.
My husband by gave me turtle doves like from Home Alone 2....how could you not cry???
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@ToughAsTeal
Good for you! I am plugging away at my 2 books as well. A little bit yesterday when everyone left me for a bit. I have a hard time remembering sometimes....like names of people. I attack the book like a test. Anything easy, I am getting done first, anything more thought provoking gets left for another day. It's amazing how healing it is to do this.....remembering is fun.
@Fearless_Moderator Yes. I heard things were shutdown your way from my Mom. It was quite the storm. They are now postponing coming down due to the rain and possible flooding. I get it and truly there is no rush.
Hubby is off this week and has decided he will join me for my Oncology appt tomorrow. He may be surprised as I have been really good at hiding my symptoms. Had a couple of really bad days before Christmas day but I go through it. I talked to my body like I did when I was pregnant. Here is my agreement "please get me through the holidays with no major occurrences and then we will deal with stuff in the New Year. The family needs a good memory."1 -
@ToughAsTeal
So glad you made it today. Sorry I just missed you last week. Sounds like you had a nice relaxing (other than the drop ins , those who strongly believe no request applies to them) holiday and so glad you're sounding much better. I should look into that leg wedge on Amazon. I stopped getting the leg cramps for a about a year but they started up again a month ago. Sure wish I could trace the difference back so I'd know what triggers them. Can't drink tonic water, it contributes to my low platelets and messes up my chemo cycle. And what a nice project to do with your daughter. The Book Of Me I've heard of but maybe time to buy one myself. Can you believe it but I'm in my 7th year of treatment now and realize that this won't go on forever. My new tune is "Living on Borrowed Time' set to the tune of Living on Tulsa Time.1 -
@Strongwoman
Glad you made it and what a beautiful gift from your husband. Definitely a tear jerker. Forgot for a minute your Mom is just NE of me and they get it even worse where she is. Like her we're staying put through the meltdown. Already had one flood when it rained before the snow.Fortunately not bad but unless the ground has a thawed a bit and there's somewhere else for the rain to go, like into the ground where it belongs, it ends up in our basement. Guess waterproofing is on this coming year's wish list.
I just realized my husband can now come to my hospital visits or come back to be with me during chemo but my oncologist appointments are really not very exciting and my chemo takes a whole half hour so I haven't bothered inviting him back. Perhaps I should give him the choice for my next appointment. Just have to figure out how he'd react....happy to be included, or terrified I want him there because there is something terrible to discuss LOL. That said, a wee warning to you about keeping symptoms and thoughts to yourself. We try far too hard to be martyrs to this disease and the emotional toll it takes to keep things secret is not always evident. Make sure those who really count are kept in the loop on what's happening. It's a release for you and for them, when time comes for really bad news they'll appreciate it not coming as a complete surprise. My son told me the other day that he so appreciates I don't keep anything from him, even share my CT results and interpretations. He says it makes him trust me that when I say I do feel good, I really do.
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@Strongwoman you had suggested that journal to me, yes?! It was between that one and another. We decided to keep this one. As it happens, it’s a hard cover and pretty pale teal colour. Appropriate. Interesting some questions old fashioned towards women “did you work outside of the home?”. Vs tell me about your fathers professional career - type questions.Eating way too many Ferraro Roche chocolates. And cheese!!!! We made my mothers cheeseball recipe for Christmas and it was a hit! Made antihitos yesterday, banana loaf and muffins this morning. Later today is whipped short bread and “haystack” cookies. Nacho dip for 6pm game time.I am going to do I tunes for living Tulsa time! It was early November when dr told me “a couple of months” and I feel confident now to surpass that!
the pillow I got is “AllSettHealth” leg elevation pillow, grey. Has washable removable cover. Came packed like those vacuum packed mattresses so it expanded quickly to full size once opened. And bonus, no chemical off odour1 -
@Fearless_Moderator oh heck I know that song!!!!!! Now on my “strong songs” playlist!!!! Thank you!!!0
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@Strongwoman
I must confess that my days of NOT imbibing are gone. Decided last year since I was living on borrowed time I really missed my evening martinis and winter bourbon so we are back to a well stocked bar and dang but my evenings are so much more civil LOL. This disease has taken away so much I can't control I figured it was time to put back what I really missed and over which I do have control. As for the cheese, my waistline would like me to put that back on the shelf but shoot, a cocktail without a bite or two of some delectable cheese just doesn't cut it (excuse the pun).1 -
@Strongwoman my hubby only just started coming into my appointments as well. I guess at this stage now I very much need him there by my side. And it now also gives kids another person to ask questions when they have been hesitant to ask me sometimes. My daughter talked with me last night that she doesn’t know what she will do with school (what do people do? Do they continue with their classes after parent has passed? Do they drop the semester?). She is going to call academic counselling support when school is back in, I told her it’s different for everyone m. And we just don’t know sometimes what we do I life until we are faced with it. Best first step is talking now.0
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@ToughAsTeal
Forget whatever they tell you about timelines. I had just that conversation with my oncologist last week and as she says the timelines they work with are median times not actual. So it's the average where there is at least someone living to 100% of that timeline and those not surviving at all. I like to think I'm the one who'll shift the curve and if it's not me it's one of you, my sisters. And from the sounds of all your baking, and knitting and reading and writing you're definitely on track to surpass me. Where do you get that energy!1 -
Energy to be busy… honestly I think I am driven more by what I feel work/career robbed from me, more than what cancer has taken from me.0
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@Fearless_Moderator
It's not that I don't want to imbibe....my body protests so I have to listen to it. Or I would be like you and enjoy when I wanted to. I smell the beers my husband tries and/or scotch and sometimes a sip but then I am like....ok that was nice but it doesn't go beyond that. I had a glass of wine on my bday lunch with my gfs and nothing since.
Well guess that isn't true, I have had some Baileys in my coffee but my "talks to me" afterwards.
@ToughAsTeal
Yes that is one of the books I have as well and recommended. With 2 children, I grabbed 2 different ones to fill in, that way they can choose which they want.
Glad to hear you are getting some relief. That is nice from what you were feeling before.0 -
@ToughAsTeal that's great advice, especially about including your husband and making him a secondary source of info for your family who may be afraid of raising things with you. As for your daughter, bang on. Some things we just can't fully anticipate until it occurs but it's good starting the discussions now so you can make better informed decisions when the time comes.0
