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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hi everyone😀
just got off phone with my brother in Vermont and had wonderful catch up. He already played hockey this morning, and was now heading for 18 holes golf..all part of their thanks giving day.
@gaylestorm my cousin is in whiterock. I am constantly thinking about them, and we message almost daily. They know someone who was caught between the slides.I am not typing too fast today
avastin tx tomorrow.@fearless are we on similar tx schedule?0 -
and I'm just going to throw this out there, but anyone looking for a super funny sitcom where you actually laugh out loud, MUM on britbox has 3 seasons and is great. (britbox is free for first month)
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@gaylestorm
@Taita
So happy to have you with us today. Taita, finally move complete eh? You must be breathing a sigh of relief. We keep talking about this house and all the property being too much now and perhaps a move, closer to town and less work to contend with but then I look at everything we've managed to accumulate here and the work to declutter just to sell, let alone the packing etc. and I'm just exhausted at the thought. Where did you end up... Toronto or close to your home base?
Gaylestorm did the saga of the electric cars for the grandkids get resolved? Nothing more annoying than ordering things like that only to find they don't work and you have to send them back. I hate online ordering for just that reason. Things are never what they seem in the pictures and returning things is more inconvenient than driving into a mall in town and just buying it there.0 -
@gaylestorm I love the idea of a dog! Great company. We sold our big house in June and just wanted to rent but nothing on the market to buy or rent. Finally found a condo and moved in Aug 19 and had it completely renovated. 3 weeks later the building we have wanted for five years finally had a condo for sale. Full disclosure it is across the road from our daughter and her family. Long story short we bought it and this time had all the Reno’s done before we moved in. Do we miss a yard and such. Not at all. I don’t miss the maintenance, the things that always seem to need to be done. It is actually freeing! Hope you get it sold in the spring and get to take you new puppy on lots of beautiful walks.0
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@gaylstorm will check that out! Love comedies.I am happy watching curling and looking forward to watching olympics.
will also be watching canadian university football hopefully televised this weekend. Go Western!My husb and I usually play rummy while Leafs games are on.0 -
@Taita did you have alot of downsizing to do/purging?@gaylestorm puppy will be wonderful surprise0
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@Fearless - Vol Mod. You need my sister to come out and declutter your house. Right after my first cycle of chemo she came to my house and me not completely with chemo head she declutter my whole house. we gave away everything we could on facebook and then hired someone to take to recycle etc. There are a couple of things i ask where they are and her answer is always "gone". But what a wonderful feeling to have it all sorted out. Stuff I'ld been keeping for my kids, they came over, looked at it and chucked most of it. lol. So now we only need a place to buy and to sell.0
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@Fearless - Vol Mod
HaHa! We moved 2 km west from our house to our first condo and then 10 min walk (four blocks) south from the first condo to the second one we are in now in. So we really didn’t “move”. 😂0 -
Hi @ToughAsTeal
I think our chemo is now out of sync since my Cycle 1 Avastin treatment got postponed a week. I had that a week ago Wednesday and next chemo, which is Cycle 2 Day 1 Caelyx + Avastin is December 1, this coming Wednesday. Then Cycle 2 Day 15 Avastin only will be the 15th. Thankfully that should get me out of any side effects in time to enjoy the Christmas holidays. I've asked my oncologist to delay the start of Cycle 3 a week so that I'm not back into any treatment until after my son returns to Calgary.0 -
@Fearless - Vol Mod i am feeling very lythargic. Hard to even get out for short walk outdoors or treadmill. Even if sunny day.0
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@ToughAsTeal
We moved from a 4300 sq ft house we built 24 years ago to 1150 sq ft and now 1400 sq ft. So lots of downsizing!!! It was easier than I thought but I am a regular purger so that helps. We left a lot of furniture for the new young couple and donated the rest to Habitat. I had way too many clothes and shoes as I travelled a lot for work and attended lots and lots of functions. I found someone who was really connected with women in the community who could use them and they all went at once. My daughter is now the host for family gatherings so she got the dining set and other stuff!!! As my best friend said to my daughters “you can thank your parents for doing this because if they don’t you will have to some day”. Great motivator for them to help!0 -
@gaylestorm
Your sister sounds like a dream to have around. That said, decluttering is almost impossible with my husband around. I purge, he picks through it when he thinks I'm not looking and it all shows up again in some other location on the property. When you have outbuildings and a huge barn there are all kinds of places to hide to his "special things" LOL. My biggest issue now is what to do with things of value. Sterling silver I never use any more, the good jewellery....and my mink coat. I hate to just give them away.1 -
Oh, and @gaylestorm how wonderful about the puppy. I had three gorgeous loving cockers. The oldest passed three years ago, the middle one last year and the baby, who was 15, a few months ago. I never thought I'd miss them so much. I'd love a pup but I think the caring and training might be much for me. I keep trolling the rescue sites but can't find much out this way that's not a big big dog, which also would be beyond my capability to manage.
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I found that on the caelyx I had no energy. Not even to paint. This cycle no caelyx just the carbonplantin and so far way more energy and no horrible mouth sores. Strangely, i actually find that even though my numbers are going up slowly, but the second week after each chemo I have better energy and no or less discomfort. I even went for a toddler sleepover with my grandson a couple of days ago. Not sure if the what i experience leading up to chemo is cancer related or psychosomatic. interesting thought.0
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@gaylestorm @ToughAsTeal
I too find the fatigue with the Caelyx/Avastin much worse than when I was on Carbo/Gem. Right now I'm a week off the single Avastin dose and the past couple of days at least finding good energy in the mornings, but by about 2pm I'm a goner. In fact, in between chatting with all of you today I was building a nice fire in the living room and once our call is over I'm curling up on the couch even though I have a zillion things to do, some of which only entail reading some reports on a project I'm engaged in and I can't even muster the energy to do that. I do hope my body will eventually adjust this this new onslaught and some of my vigor will return.1 -
@Fearless - Vol Mod i know its 2pm..
will type fast. Mink coat. Find local who can repurpose. I did that with my mother's 20 years ago. Got 3 teddy bears made for us in family. And what was leftover i donated to seamstress because she made them for charities too. Hindsight, wish i would have maybe did combo of 2 teddys and a lap throw blanket or pillow/neck roll of sort.Am selling artwork work that brought me joy, but no longer has a place on wall.. and daughtntold me she would sell it "when that someday comes" so, its gone to auction. Swedish Death Cleaning.0 -
I think we are coming to saying goodbye. Have a good week everyone. Rest, eat, just do what feels good. Look forward to talking next week. And both ride on jeeps are together and waiting for grandkids to come over and play. Take care, Gayle0
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Thanks for the suggestions @ToughAsTeal Right now just focused on enjoying the holidays and my family. But my project in the new year is to get this place in order so that we can make a decision to sell on a dime if the time comes we need to do that.
In the meantime ladies, another hour has passed and time to say good bye for another week.
Sending positive energy to those out west caught in the flooding issues, and now those down east who may have some thing similar headed their way. And always sending positive energy to you and our Teal Sisters.
See y'all next week......
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FINALLY DECEMBER. YES IT'S THE 2ND AND TIME FOR ANOTHER LIVE ONLINE CHAT IF ANYONE WANTS TO JOIN IN TODAY.
Is the weather miserable everywhere today? Certainly down East has had its share now, and I'm saddened to see BC going through another round of it. So I shouldn't be complaining about a cold miserable rainy day where I am. And thoughts should continue to go out to those affected by the weather that they can return to some semblance of normalcy in time to grab some enjoyment out of the holiday season.
How is everyone feeling about the increasing Covid spread and the impending Omicron. Is it changing any of your plans to gather with family or friends over the holidays? Where we are cases are way way up but all seem related to private gatherings or contact with travellers and nothing coming out of restaurants or events or retail stores...and, mostly those not yet fully vaccinated. I've had my three now, and Mr. (who is home moaning and groaning about is shot) had his booster yesterday. Add to which we are always cautious anyway and I'm not overly concerned. And the most recent readings I've done on Omicron seem to indicate it's a faster spreader but much lighter in symptoms. Hopefully our wonderful media are not creating a scenario of doom and gloom and mass panic.
Enough about my thoughts today. Just off Cycle 2 Day 1 yesterday so not my usual self. That said, so far nothing major in side effects other than feeling draggy and my voice almost gone...thank goodness I only have to type for this chat LOL.1PM ladies, so say hello....what's on your mind today?
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Happy Thursday😀. Tiredness really hit me this past week. Grateful for on line shopping options but realizing how much I miss getting out and coming home with parcels to hide for wrapping.
hands got bad this week - continuing with utterly smooth. Crazy, i thought Peavey Mart farm store would be best price. Juravinski pharmacy had it $4 less! Sudden severe heel pain. Reading. Chemo effects on plantar fasciitis. I really really hate "resting" with feet up.0 -
I finally got my blood pressure and heart rate under control on the lower dose of Zejula. Still easily out of breath and dizzy. Pushed my oncologist on the latter and she finally came back saying I am anemic, a known side effect. Just started an iron supplement yesterday. I am really hoping that this will solve the problem.
I don't go to many places, but decided to order some N95 masks for indoor use since it now appears Covid will be with us for a long time.0 -
@ToughAsTeal
Caelyx and Avastin for me yesterday. So far my voice is gone, I'm dragging my butt, and my face is flushed. But so far no mouth sores or the hand or foot skin rashes so grateful for that for now, Happy to contend with what I have. That said, back on Prednisone for Gout #2, this time in my left foot and the second attack in a month so the emerg doc suggested I consult with my GP for a prevention plan since this may now be something chronic, and not related to the cancer or the chemo. Sheesh, if I don't have enough I now have this to contend with????
Sorry to hear about your side effects. I can sympathize having had to stay off my foot for the past four days because of the Gout. Makes me feel so nonproductive and it's such a drain on my husband having to play servant.
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Oh, on a happy note though everyone in chemo was commenting on my CA125. Started Cycle 1 at 7500. After first Caelyx Avastin dose I was at 4500. After just the Avastin two weeks ago I'm down to 2500. Still way up there but the dramatic drops are sure encouraging that this protocol is having some effect. Ya hoo!0
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@jmbarrhaven
Welcome and so glad the dose reduction has helped with the BP and heart rate. Too bad about the anemia though but it is a common effect I hear. Hopefully the iron supplement will help with those symptoms and you can get to a place where the Zejula is tolerable to your system. It is a miracle drug when all the stars align.
Agree with you. I don't think we'll ever see the end of Covid, but maybe one day it will become just like the flu. Always there but manageable. But yes, wise in the meantime to keep protected. I haven't had to order any N95's. Our cancer centre makes you change into a fresh one every time you come in so I have a collection now. That said, being on a rural property Im pretty isolated most of the time anyway and I pick and choose where and when I go out anywhere.0 -
wooooo hooooooo! Yeah ca125 drop!!! Doesnt that just have tremendous impact on mindset! And @jmbarrhaven yes! for managing bp. One little piece of something positive! I think you both have given me the kick i needed. Have been feeling very very down. Oy yoi yoi the pain. Lol. Ok a positive from me is I have had good few weeks with being "regular". I can celbrate that!0
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@jmbarrhaven
Question for you. Once you go on Zejula for maintenance do you still get regular surveillance consults with your oncology support....blood work, and scans and general follow up on a regular schedule. Just my curiosity since I've been on a PARP but not for maintenance. Mine was treatment trial so I was monitored monthly. And before PARPs practice used to be generally a check in every 3 to 4 months with at least one scan in the first year. Would be interested to know your experience.0 -
Until I found Ovarian Cancer Canada I was finding that my doctors would not give me any sense of what lies ahead. They have given me 5 years with multiple chemo sessions, but wouldn't tell me anything about how it would progress and how I'd feel. Reading various discussion threads has really helped. So many seem so positive, much further on than I am. Many people in my life have told me that my whole attitude has changed markly in the last few weeks. Thanks.0
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Also, I have been very impressed and encouraged by the research being supported by OCC. It seems so well organized and targetted. There is some hope on the horizon.0
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@fearless when I was on the zejula i was going in monthly for bloodwork, and talk about any side effects, symptoms of anything changing, etc if that helps?I read news from 2 days ago in states new approval for an inject, works like a dye? Just before ov cancer surg and detects microscopic remains so can also be removed at time of surg.0
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I have a weekly visit to a nurse who takes a blood sample and blood pressure. That was only supposed to happen for a month, then go to monthly visits for a few more months. However, I have had to stop the Zejula twice and each time, I have to start over. Initially an rotating cast of oncologists (no continuity) called me once a month, but since my second stoppage they have been calling me once a week. My GP is really the one who has helped me with medication to treat the high blood pressure and pulse.0
