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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Anyone doing anything fun for the holiday weekend? Since my last chemo was aborted i'm being switched to Cisplatin and a special desensitization program. It starts on Saturday with 5 dexamethasone a day, among other premeds, until Wednesday so I expect I'll be the energizer bunny until I come down from that high!2
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So agree both covid fatigued and news fatigued. Seems endless. I restrict myself to one newscast per day, just too much.
Fingers crossed for better weather days ahead, more walks on trails, so tired of my neighborhood. I'm not going as often as I should cause I'm tired of the same routine. I know not just a problem but...0 -
We are planning an outdoor dinner on Sunday. There will be 5 of us, daughter, her husband and our grandson. We have shelter and a gas fireplace so we can distance and dine!
I'm grateful that we are able to do what so many others can't.0 -
@Readersmaven Is there a difference in the amount of chemo, ie # of cycles involved in earlier treatment where the cancer load is so small?0
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@BeamBlossom did you consult with your oncology team about the appointment timing? Know-it-all me thought I had it covered by booking the first appointment I had for 4 days before my next cycle, assuming that would maximize my immunity level but my oncologist wanted a gap of at least three weeks out of chemo and preferably four. So, she dropped my Day 8 gemcitabine, rescheduled my next Day 1 by a week so I'd be as long as possible out of chemo but as close to the next cycle so that my immunity would be at its highest. And then, since Gem is hard on the immune system, she's taken it right out of the cycle this time. Her rationale was that the Gem is really a nice to have but its the Carbo or Cis that do the heavy lifting and if she weighs the risks of not doing Gem or my getting Covid she's opting to protect me from the Covid.
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@Fearless - Vol Mod Are you coming to the end of your treatment regime? Last time we talked, you mentioned you might need to switch out a drug due to an allergic reaction, did you end up switching?0
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@BeamBlossom... good question. I didn't specifically ask that, just assuming it will be 6 treatments again as she said it would be carbo/taxol combo again.
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@Fearless - Vol Mod - yes I got the benefit of input from both oncologist, both favoured getting the vaccine while I am on this chemo pause.
In frontline, I was told that Carbo was doing the heavy lifting, then afterwards, was told I was carbo resistant so it was the taxol then that was more effective for me. But now everyone is just confused lol.0 -
@Readersmaven my recurrence was caught very early and the growth not even a cm...more like 5 mm's. I could have held off since no real symptoms but I'd been out of chemo for two years and there was no reason not to go ahead so I opted for treatment. Answer for me...same chemo as the first time, same doses, same number of cycles..in fact, my oncologist mentioned that if my outcome was a good partial response but not full, she'd add another couple of cycles so to expect up to 8.
@BeamBlossom yes, allergic reaction to Carbo the last time as well. They only managed a quarter of the dose before they had to abort. So this time they are using Cisplatin...still platinum based since I am very platinum sensitive still. My CA is already down to 26 from 3000. And adding in a desensitization premed program starting on Saturday to help ensure no further issues as well as deal with side effects that are a bit more than with Carbo.
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And @BeamBlossom what a relief it would be to find you are platinum sensitive after all. I'll keep my fingers crossed on that one for you.0
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@Fearless - Vol Mod THAT"S FABULOUS!! So, happy to hear of your great CA score and how wonderful to know treatment is working. I'm sure the added measure will make Cisplatin your new best friend. When is your last chemo?0
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@Fearless - Vol Mod ...my last chemo wad only last May so that also figured into decision, I don't think stretching it out s bit will make a significant difference.
Happy Easter all, enjoy your weekend however you celebrate!0 -
Well my dear friends...it's the witching hour again and I must fly for this week. But I'll be back next Thursday...probably wired for sound on all the dexamethasone so we'll see if I can break the record for WPM typing!
I wish everyone a wonderful long weekend...whatever you may be doing and however you may be able to connect with family and friends.
"See" you next week.....in the meantime, stay positive...stay well.
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Signing off....hope everyone finds peace this Easter Weekend, God's Blessings to all!3
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Hello @Fearless - Vol Mod and fellow Teal Sisters. Sorry I won't be able to join you once again this afternoon. Unfortunately my OT treatments conflict with this time. But I do catch up on the chats later on! Was happy to read about all the good news stories week and hope everyone had a wonderful Easter weekend.
I have my quarterly Gyne-Onc appointment coming up soon. This time I really don't feel as good and pushed for a CA125 test. I've been very uncomfortable with frequent pain in the abdomen and a lot of bloating. I'm not sure whether it's the original hernia that first got me screened, and which was not touched at all during my hysterectomy, or something worse. Will have to wait and see...
Wishing everyone a great rest of the week and a fulfilling weekend.
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THURSDAY APRIL 8....Welcome to today's live chat. Such a gorgeous day here, wonder if anyone will be on line today LOL.
Feeling a bit groggy today. It's been a busy week. GOT MY 1st COVID vaccination on Monday. Easy Peasy. Totally impressed with how organized they were, and no reaction at all for me. Not even a sore arm. My husband tomorrow and both of us for seconds end of July. While I know I'm not totally safe, and will continue taking normal precautions to protect myself and anyone exposed to me, there is a sense of relief getting this first hurdle to wellness out of the way. I can see light at the end of this tunnel we've been going down, just wish we could get through it faster...but I know you all share that feeling.
And just out of chemo yesterday. The did switch me to the Cisplatin after two bad reactions in Cycle 5 to my usual Carboplatin and it was great. A long day with lots of pre-meds and slow slow drips for protection but no reaction at all, or even any real side effects so far. So I guess that's my new drug of necessity. Next infusion the 28th which I think is Cycle 6 Day 1 and might be the end or close to it and then on to enjoying what I believe is going to be a wonderful summer.
Couple of reminders:
April 21 7PM EST: the next Speaker Series event with Jennifer de Witt Turner on Living with the Fear of Dying
May 8th 11AM to 4PM EST: Virtual Symposium recognizing World Ovarian Cancer Day. I'll post a link and the agenda but looks like a great line up of interesting topics for us
Finally, registration is now open for this year's Walk of Hope in September.
Well gals, it's now 1PM.....let's get started. Who'd like to kick off today....something to share, something to laugh about or celebrate, something ask.........0 -
@Tinazzie So sorry to hear you can't join us today. It sounds like you could use a bit of extra support. Nothing like a symptom of something arising and that wait to get it checked out. Let's hope it is just the hernia. I have one just above my navel from the original surgery and from time to time it does cause me some problems. Then they miraculously disappear. Let's hope for the same for you gal. But do let us know.
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Hi there! Glorious day for sure, was out earlier for a walk, when it's like this, can't help but have a spring in your step.
@Fearless - Vol Mod you've certainly had a busy week! Glad your treatment was uneventful, exactly what you want.0 -
Hello Fearless, it is indeed a beautiful day! Feel great. Next treatment of Caelyx on Monday. No reaction except a couple of cankers which I am susceptible to anyways, so all good! Keeping lotion on hands and feet as your friend suggested
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Hey Ladies...I haven't been on for a few weeks again...and am not staying but I wanted to pop in and say HI...I am well but work sucks and is keeping me too busy.
I hope you are all well. I will play catch-up on the posts later as I usually do when I am not able to join. But, I wanted to say, I am thinking about you all and am hoping you are enjoying the fantastic weather.0 -
@Tinazzie definitely keep us posted on how you're doing. Fingers crossed that it's, dare I say, just a hernia. I've never had one but my husband has and he was in lot of pain until he had it taken care of.0
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Hey everyone @Readersmaven @KarenBemi @Taita Great to have you with us, although too bad KarenBemi can't stay. Work Work Work....LOL, I'm so glad that's over for me. 40 years of it was enough. But nice of you to check in and glad you do read the posts later on as many do apparently.
Taita, glad to hear the Caelyx is working out for you and that my friend Janice's suggestions were helpful. She's still on it and doing really well now. Apparently Caelyx is a bit of a slower starter in terms of seeing any response but it's kicked in for her now and her tumours are shrinking and her CA dropping nicely. So she's very happy. And the side effects, mostly mouth sores and skin, have been lessening. So perhaps you adjust over time too.
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I can't remember but anyone else on who's here in Ontario with our new stay home order? Our social network sites for the communities are buzzing like crazy with confusion over what is and what isn't open and of course all the inconvenience complaining. I truly understand, but isn't it more important to get ahead of this awful curve we're on again...especially with these new variants. A little pain right now to get out from under it faster is my vote. That said, living out here on a farm and in cancer treatment this is my life anyway LOL. So not much of an inconvenience for me.0
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@Turtlegirl
It looks like you're with us again this week. Are you able to see the string of comments this time?0 -
Thanks @Fearless - Vol Mod, My 3 month scan in end of May so if it isn't quite where we want it to be I will ask about a little more time. Success stories are important when we are dealing with this beast. Thank you for sharing!
My family doc retired after 44 years and I met my new doc yesterday. Really like him. The first thing he said is you don't look like you have cancer, you look great!!!
I have multiple good news to share. We both got our first dose of Pfizer! Yay! Our beautiful granddaughter will be four months old on Saturday and she is such a joy. Our oldest grandson got engaged on the week-end and friends of our daughters from Toronto offered to buy our house and we said yes! We had been thinking about it for a couple of years (even pre OC) and it just seemed right. We have lots of help and I love purging so it is all good. After 24 years lots of great memories and now new ones to be made. Such is the roller coaster of life! Fun times
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@Fearless - Vol Mod, I too am in Ontario and there really is no change for those of us in small towns and in chemo. Much harder in some areas for sure.
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Yes. Hello. All is working well this week.
Admit to finding the treatments following original surgery and chemo bewildering. I am not there -- yet -- but want to be somewhat prepared. And at the same time feeling like a lab rats with no sure thing in the cage.0 -
@Fearless - Vol Mod I'm with you on this one... somehow short term pain for long term gain is important. That said, I haven't been much of anywhere in 1.5yrs due to treatment etc and the variants are scary. Being retired, it's certainly easy to stay home and I'm grateful.
I'm away from home (in London) for my radiation treatments so it's going from hotel to cancer centre and back... that's it! I'll be home over weekend and back next week to finish treatment.
Still waiting for vaccine appointment, so being extra cautious while I'm here. Fortunately treatments are easy, much easier than chemo so I'm glad to have this option.0 -
Wow, @Taita what great news all around and thank you for sharing. Sometimes we get so caught up in this disease we forget there are so many other things in life to be celebrated. Great that you like the new family doctor. I hate to say it but I wish mine would retire. He doesn't seem too interested but to my advantage, I just tell him what I want him to do and he just arranges it LOL. And congratulations on the vaccinations. Pfizer too for us. I really hope they'll keep the flow of vaccines coming in across the country and we can speed up the process and get everyone safer. And wow, look how life just goes on despite all this adversity....congratulations on your grandson's engagement and your granddaughters' fourth month...a quarter of her first year now, eh. And how wonderful to have sold your house so easily. And of course that wonderful complement from your new doctor. I too keep hearing how well I look...I'm learning just to smile and say thanks and not be so dubious LOL. Truthfully, I do feel really well these days....the best in a couple of years actually.0
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Hi ladies, sorry to be joining this late and @ Fearless I am in Ontario with "stay at home order"
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