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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@CountryLiving
I'll add you to the Snoopy happy dance party.
And to the rest of you, CountryLiving is one of the very fortunate. Yet, I'm seeing more and more like her these days. Never before has there been so much new research, new treatments, new approaches and while some of us are benefiting like CountryLiving, others of us are also benefiting by being able to live good and productive lives with the disease, knowing we'll never be "cured" but are being managed.2 -
@eileen, great news from you too. Thanks for sharing.0
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Well ladies, it's after 2:00 and time to sign off for another Thursday. It's been a great chat today and hope each of you found what you needed here today.....maybe some new hope, maybe some information, maybe just people to celebrate with who understand how important those milestones or even little successes can be to us.
Have a great week ladies. Reach out in the regular forums if you need us. But hope to hear from you all again next week when I open the doors at 1pm.
Big big hugs in the meantime to all....
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Wow, one more month almost at the end. Yes, it's Thursday March 26 and time for our last live online chat for the month.
How did everyone fair over the long weekend? I know some were visiting family, some were doing some entertaining. Quiet one for us. When you're retired, every day feels like part of a weekend.
Thoughts go out to those impacted by that terrible storm that picked its way across Ontario. Some are still out of power I hear, but the thought of ten deaths is really sad. It passed by us in a matter of minutes and just a blast of heavy rain before the skies reopened to sunshine. I sure hope no one in our circle was impacted.In the Fall of 2020, you may have been one of the hundreds of people who participated in The Every Woman StudyTM: Canadian Edition. This study was the first of its kind in Canada. Understanding the experience of Canadian women living with ovarian cancer through the Every Woman StudyTM, is published and now available online at: https://www.mdpi.com/1718-7729/29/5/271 I'm looking forward to going through it. It would be interesting to hear what "ah ha's" any of us see in the data or whether the outcomes were expected.
Disappointed to see the minimal interest in our community wanting to volunteer to help support OVdialogue and our membership. It does take some effort, but the more there are engaged the less effort each has to expend. The work is simple, can accommodate anyone's schedule, and is interesting and rewarding. Whether someone is new to this cancer, or in remission or in the middle of a recurrence you all have a unique perspective and your own experiences to share with others. Please consider joining our Peer Support Team or perhaps a buddy you've met on this site. I"m happy to answer any questions you may have.
And without further ado...time to get rolling ladies. Say hello...let us know how you're feeling today...is there anything in particular you'd like to share?......
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Hi everyone
@Fearless - Vol Mod yes I would like to help in any way😀
Chemo has resumed. Had my first tx at small unit in Guelph. Blew me away when they told me they serve patients lunch if there over noon hour!My ca125 had climbed to 985 in April. Bloodwork last week, it dropped to 85😀 with jist two treatments of gemcitabine. I know its only a small piece of the overall picture, but I celebrate that drop.Managed to get a small walking tour of our daughters university last week. I hit the wall after about 2hrs. Then I became Miss Cranky-pants.
Couldnt believe how fast the storm came in. Lights flickered briefly, that was it. Lots of trees and large branches down around our neighbourhood. Other areas of city got it worse.2 -
Happy Thursday! Well this week is much better than last, but still not quite there. Recovering from the viral infection but struggling with my eyes. My clinical trial (which was great) caused issues with my corneas (not unexpected) but they usually reverse within a few weeks of stopping the drug. It has been almost 5 and it is worse. Like walking around blurry all day. Such a weird feeling. Anyways, continuing with drops and seeing specialist again in 3 weeks. Crossing fingers. In the meantime, lovely paxitel has started my hair shedding and the cankers have decided to arrive. All quite manageable, but I really am ready for a bit of relief from these last two weeks! On the good side, my weekly paxitel and avastin are going well!1
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@Fearless - Vol Mod
I got the email for the event June 6th. Looking forward to it. I too participated in the Every Woman study and am really looking forward to reading it. Lots of work was put into it and it can only help.0 -
@Taita
is paxitel same as paclitaxel? I had read your previous posts about the infection and glad it has improved.1 -
@ToughAsTeal A snoopy happy dance for you this week and your CA125. That's quite a drop and definitely indicates the new treatment is working. And wow, did you score with the change in chemo unit. Not only are you so close to home now, you gals get the VIP treatment. Lunch.....if you tell me they do high tea mid afternoon I'll be asking for a transfer there myself.2
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Hi ladies, it's been awhile. I do read all the comments every week, had my 4 months check up last week and so far all is good,, CA went from 11 to 11.10.Next check up in September.1
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@Taita so sorry to hear about the impact on your vision. i hope that will resolve quickly. Losing your hair again must be a disappointment but one I'm sure you'll manage. But I got my first mouth sore last week. Ouch was that painful. And coupled with the continuing sore throat made eating an issue until my doctor had the pharmacy at KGH mix up a bottle of special mouthwash...I think it's called Miracle something. It helped soothe my mouth and throat. If it isn't the treatment itself, those pesky side effects make things even more difficult. Just plow through it all gal...keep your brain focused on that trip ahead.0
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I am looking forward to the summer, today is a beautiful a beautiful 25 degrees in Brampton Ontario. We had some trees damage in my street from the storm. Our only child is getting married end of July so I am planning to focus on her and enjoy the wedding.1
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@ToughAsTeal
Yes it is. I should just say Taxol
It is weekly so the side effects shouldn't be a bad. 0 -
@Rad, so glad to hear from you again and congratulations on the continuing success of your treatments. Much appreciated when you check in from time to time to update us. Hearing someone consistently report they're clear is so encouraging to others.0
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@ToughAsTeal thanks for the offer to volunteer. I did get your note the other and have been remiss in responding. But I"ll get in touch in the next few days to set up a call to talk about the role further. You will definitely be an asset to our little team.
Was it Western that you toured? I think you mentioned it was London you were visiting. I spent two very happy years there as a combination student (law) and newly wed, my husband (at the time) doing his MBA there. Great town and the school was amazing then.0 -
@ToughAsTeal
That is some great news!! The lunch is pretty cool! I am back at my local hospital and I get tea and cookies and I was thinking it was pretty special. I will have to drop a hint or two 2 -
@Rad This wedding will be extra special! Especially that more can get together now.@Fearless - Vol Mod yes.. Western. Lots of beautiful old buildings. Had a small lunch (famous bagels) at "The Spoke". Maybe 40 years since I have been there!1
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Thanks @Fearless - Vol Mod, I do get tense and stressed out before every appointment, always wondering if my CA would rise and I will be back on chemo. I admire all you ladies who are so strong and takes each new treatment and rise above it.0
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Any one have any suggestions to lower my BP. I"m still struggling getting it stabilized under 160 and they keep cancelling my Avastin treatments until I can get it that way. Right now I'm on a BP med (300mg daily and the highest dose), a Beta Blocker they've been doubling dosage of (right now up to 20mg daily) and some anxiety meds to chill me out and I can't get the dang pressure into the 150s on a regular basis. I've got a prechemo check on Tuesday and then chemo scheduled on Wednesday and already stressing about my BP readings when I go in for both.0
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@Fearless - Vol Mod
I too had some issues and am now on Norvasc (max). What I found is I asked them to bring me in a bit early, leave me alone and I closed my eyes and did some deep breathing exercises to calm me and get kind of zoned out. Took 10 minutes and made the world of difference. You have to clear your mind (which for most of us is a challenge) but it worked. I would give it a try. The BP goes up in anticipation so you have to get past that and 10 min did it for me. I take mine at home twice a day and do the same thing and I am now in the 120's on a regular basis,. Hope it helps.
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@Fearless - Vol Mod,since my surgery I was diagnosed with high BP, I try to walk every day, less salt intake and eat lots of Cucumber. @ToughAsTeal
yes I am really happy that we will be able to be out and about more for the wedding1 -
Great to hear Taita has signed up for the upcoming event on June 6..I've signed up as well. To be honest, 3 hours on a zoom is too much for me but they've posted the agenda along with the registration links on the OCC site so, like the symposium, I take it you can go in and out based on your interest in the topics. Needless to say will be very interested in clinical trials.0
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@fearless my bloodpressure rises just to be told "we are going to take it". I have been practising a calm breathing i learned in a stress workshop. I do it in my own way.. must close my eyes and i ask nurse to not talk with me. I visualize me sitting watching lake huron. Its a very specific place, and i am aware of every dune, and cottage. I dont know if that level of teleportation is helpful, but it does take me to a calm spot. And bp has been good. I read somewhere about hypnosis?2
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Good morning. @so sorry to hear about your BP. @Fearless - Vol Mod. I am on BP meds myself. During my 1st chemo i found everytime i went on my pantoprazole it uped my BP. Its not suppose to from talking with dr and reafing about it but for some reason i think the pantoprazole was causing the BP meds to not work. Maybe ask in case one of your other meds are interfering with your BP. Its worth an asking.0
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Thanks Taita and Rad. I'll curb my salt intake for sure. I try to be conscious of that but boy, those McDonalds fries are just too tempting sometimes LOL. The meditating before used to work but suddently it doesn't. They've given me a second anitanxiety med - Atavan - to take just before a "trigger" event. Hopefully that combined with continuing to chill out for bit before they take my BP will work. It's that vicious cycle.....stressed that my BP will be too high to get my treatment, so I take meds to control it which remind me that my BP is problematic. The frustrating piece is that the Caelyx/Avastin combo has been working well until a month ago when my BP suddenly spiked for no reason. Anyway, my plan now for pre treatment will be to take the Adavan an hour before, once in the chair have them turn down the lights, put my iPhone speakers in my ears with one of those "spa-like" sound recordings (waves crashing usually work for me) and just focus on that before they take my BP. Wish me luck.2
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Ladies great weekend to all and my thoughts and prayers to those in treatment,.1
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@ToughAsTeal just saw your suggestion, somewhat like Taita's. Thanks. As for hypnosis I used to be able to self hypnotize. Used it to quit smoking years ago and was taught to put myself under without benefit of my doctor. Just looking for my notes.
@Eileen thanks. If I hit a wall again I"ll be sure to have them sit with me and go over all my meds to see if something there is a cause. Worth looking into.1 -
@fearless sounds like a good plan especially with light dimmed and earbuds. And yes, the "spa". I have always called it my spa day. In part, because everyone else in my life wasnso nervous to ask "how did chemo go". But everyone could ask easily about the spa. I have never in my life gone to an actual spa. Short of me wearing a white robe into chemo, and cucumber slices on my eyes, i was there "for me". It was MY time.3
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Congrats @ToughAsTeal on your CA125 markers dropping. Thats great news. I myself still dealing with a little mouth and feet issues but more manageable. I am on magic mouthwash myself. Also was put back on fluconazole to help with the mouth for 1 week. Dont want to be on them too long. Dr says it effects your liver.0
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@Rad, same back at 'ya gal. Keep up the great results.
Everyone else, good luck with ongoing treatments and dealing with ongoing effects of treatments. Despite the issues each of us are dealing with, overall we all seem to be making some good progress. Is it great medical intervention or is it the will that this disease isn't going to beat us into submission. We are a strong and resourceful and resilient bunch.
Big hugs to all......don't forget to vote next week if you're in Ontario.....and 'see' you all again next week.
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