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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Thank you so much for that uplifting story @Fearless - Vol Mod. I needed that today!!!!! I am waiting for my scan results from Monday (got my CA-125 yesterday) and trying not to stress (pretty much impossible of course)! Glad to hear everyone is doing well!
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Yes, there are some people who are so inspiring. I find that a lot as well, and certainly try to follow their example when I have those down days! All the best with the results of your scan @Readersmaven.1
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Can only stay for 5 mins....have a wonderful day ladies, talk again next week!1
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@Sylviequebecbc I'll try to find out a bit more about that trial and the specific drug when I'm back in clinic. I was in a short chemo yesterday and brain fog kicked in as soon as I was done. Should have written everything down but I don't have to tell you gals that LOL.
@taita wishing you good news on your scan. Again, let us know when you find out. How was your CA125 score?
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@Tinazzie thx for the positive thoughts. I already know I'm having a recurrence, just had hoped to push a return to chemo out until the fall. I'm having pain (not severe, but daily) so as the nurse said to me on Monday...let's just say that things are likely changing but maybe not growing. So I'm holding on to that but have prepared my family for the reality that chemo could happen sooner than we'd hoped.0
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@Readersmaven, @Taita Sending good vibes your way for excellent results next week. It helps to remain upbeat when the weather is so beautiful...1
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@Readersmaven keep that positive attitude. I'm on my third recurrence now and still kicking. Almost done chemo now and we all do hope for the longest gap possible between treatment and recurrance but it is what it is. I just go with the flow. As long as they have something to treat me, I'm happy.
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@Fearless - Vol Mod
My CA-125 was 167 up from 101 Feb 15th. I didn't start the Caelyx until 15 March so I am telling myself it may indeed have been higher by March and that it isn't so bad
. Sometimes rationalization (in some form) helps. I too am platinum resistant and would very interested in the treatment when you find out. Any good new is more hope! On the good new front, we bought a condo on Tuesday and move in August 16th. So looking forward to it! Packing almost done
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I'm still struggling with the discomfort and lump in my abdomen. Two other physicians have looked at it and are quite sure it is a hernia. My oncologist's office still feels that it can wait until my July appointment. So, I continue to do battle with the it. It's playing havoc with my bowels as well. My stomach is quite flat when I start the day, but by the end, I feel and look 3 months pregnant! Anyone experienced similar symptoms?0
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@Taita, moving...how exciting, but perhaps daunting to face packing up!
Hopefully your scan results will be positive and you'll be well placed to do all things related to this new chapter.0 -
@Readersmaven Yes, we know our own bodies and can feel change even when it can't be seen. We have to hold onto the fact that it might be good change. I keep telling myself the tumours are shrinking and my "feelings" and small pains are just repositioning. That's my story and I am sticking to it until they prove me otherwise LOL!
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Hi ladies, @Fearless - Vol Mod thanks for that uplifting story.,@readersmaven sorry to hear about your probable reaccurance and I am sending good vibes your way.@taita all the best on your results.1
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@Fearless - Vol Mod and @Taita this is what I very much appreciate about this group...lots of positive thinking and perspective, so thank you!1
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@tinazzie you sound like me. I have a hernia from my original surgery just above and slightly beside my navel. They call it small but when I'm standing it' protrudes and feels the size of a golf ball. And yes, it seems to cause some obstruction in how food passes through my stomach into my colon. We tried surgery last fall to repair it, something they seem very reluctent to do but I had had a severe attack of pain on my side and they thought it might have something to do with it. In any event, they went in only to find I am riddled with adhesions that don't show up scans, so much so they couldn't get past them to get to the hernia so close me up and I'm stuck with it. The only things that seem to help any discomfort I get, other than to be more conscious of what I eat, and how much at any given time, is 3 Senekot on night before chemo, night of and next night and if everything is moving ok then down to 2 a night the rest of the time. And Pantaprazole twice daily to manage the acid reflux that seems to be exacerbated by the hernia. And if you get really gassy, lie on your left side in fetal position and massage your tummy counter-clockwise gently, Just make sure no one is in your "line of fire" 2
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@Tinazzie so sorry to hear you are experiencing the bloating. I too have it. In the morning everything fits and looks fine, by the early evening I feel like I am busting out. I think it is a combination of water retention from the Caelyx and ascites for me but not sure really. As we all know there are multiple reasons for everything which makes it hard to figure out. My Dr. did give me an Rx for a diuretic which I only take if I need it but it does help somewhat.
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@Fearless - Vol Mod and @Taita - your symptoms do sound rather like mine! Typically, how are ascites confirmed in a patient?0
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@Taita you're absolutely right. You're new CA125 could well be reflecting a drop since it had time to go even higher before you started on the new chemo. That would be great news. My next CA is not for four weeks now. The last showed me up a wee bit, yet the scan showed my tumors down by 50%. Go figure eh. Anyway I like to dwell on these for me....my tumors have never changed in five years other than growth or shrinkage. Always the same two spots. Never any spread elsewhere. And, no pain. Mild discomfort that may be the cancer occasionally pressing on something but it does seem to shift and sensations move over time. And so far, I've been extremely responsive to whatever they've tried with me. Highly platinum sensitive still and had over the moon response when on the Olaparib trial for two years. So I just figure there's always going to be something around the corner when the inevitable next time happens. I think my saving grace is that I came to an early acceptance that the way my cancer configures, I can never be cured. But I can live a pretty decent life with it. Once I realized that, my anxiety levels really disappeared. And, of course, I do believe in miracles...always.
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@Tinazzie in your CT. they show up there. I don't have them but every CT I have they look for them and so report no evidence. They are one of many reasons for abdominal discomfort. I'm thankful so far they haven't plagued me.
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Ladies, I'm going to exit early today. I have to run up to Napanee to pick up my dog at the groomer so she can shut down for the day. I hate to keep her waiting and it gives me a chance to see her 6 mos old. He's just a doll so I'm playing grandmother vicariously since I don't have one of my own...YET.
Everyone have a lovely week and we can catch up on the fly or next live chat.
Cheers for now and blessings to each of us......
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Wishing all a good week - and good news!1
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@Fearless - Vol Mod
Quick news flash. Apparently my scan says "marginal progression" after three treatments. I am taking that as good news! That was all he had to say.0 -
@Taita...absolutely take that as good news! Fingers crossed that you continue to move in the right direction!
Hope everyone has a good week!1 -
HELLO LOVELIES and WELCOME TO TODAY'S LIVE CHAT......yes, it's Thursday June 10.
It sure does look like the Covid vaccination pushes in many of our provinces are paying off. Here in Ontario we're beginning to open the kimono, carefully, to life as we remember it. Tomorrow in Ontario, patios, retail, outside activities open with some restrictions and our stay at home order has already been lifted. And just heard one of our local hospitals is lifting restrictions on visitors and support people. That will really help many of our Teal Sisters to be able to have their caregiver or a family member with them again. Hoping my own Cancer Center follows suit. Clearly the decrease we're seeing in cases is directly proportionate to the increase in vaccinations. I've had both but excited that I was able to accelerate my husbands' second from the end of July to this Tuesday.
The next Speaker Series event has been announced: topic Mindfulness. I've posted the info and registration link on our home page for those interested.
And the Teal Teas June schedule is also posted on the OVdialogue home page, along with the registration link. Some great feedback from the sessions last month so think about joining in. I might give one a test run myself, although it's right in the middle of my chemo schedule so will see whether I'm up to connecting live.
Well, with all that said, it's 1PM EST so let's get this party started. Who's with us today? What's new....challenges to address, something to celebrate, questions to be answered....just feel like hanging out?
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Good afternoon everyone! I'm so relieved that it looks like covid will be a nasty memory in the not too distant future. How nice it'll be to sit on a patio enjoying a meal with family or friends.
I was disappointed in my appointment for a second shot this week. Even with an appointment the line up was an hour and a half long and when it started to rain I left. There were elderly folks with walkers/canes waiting in line. I don't know why they bother giving us an appointment when it appears that people were just dropping in.
I've booked another appointment at an off hour, or at least I hope it's off, to get my second vaccination.0 -
Hello! I have my big surgery scheduled for tomorrow ( hysterectomy, remaining tube ovary and omentum) and I was wondering what to expect?0
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Hi @Annie1950 so sorry about your vaccination experience. Bad enough someone feeling not 100% from cancer has to stand around that long, and inclement weather but even worse to treat our seniors like that. I'm really surprised. Out here, as soon as the heat hit, they stopped line ups outside and moved them all inside...and even still, you are told to arrive no earlier than 10 minutes before your time and from what I've seen no one waits longer than that to get processed and seated. Of course we don't have the same volume but still, an appointment is an appointment. Can't understand why you'd have to wait any longer than a few minutes. Perhaps they were understaffed that day but still trying to keep their commitments? At least you were able to rebook quickly. Hoping not the same experience.
How is your health otherwise?
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