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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I'm waiting and hoping to get in the Presco Trail, I was disappointed that when I went in to PMH on Dec 24, the trail coordinator would not let me sign, as it would trigger a 28 day timeline she wasnèt confident she could meet for the pre testing to be completed, so I go back on Tuesday next week to sign paper work and do blood work, then a CT is scheduled for Friday the 8th, I wait for the biospey appointment which I hope is soon. Odd they do not start with that as it is a requirement of this trail that the cancer cells are confirmed to exhibit the surivin protein.t
Either way, I really hope I can get started by mid month. I find it is so nerve racking sitting and waiting while I know the cancer grows and symptoms worsen. It is such an awful feeling.0 -
Did you hear about the announcement out of BC last week, it was featured on Global news. It came from a company called TriumpF who is working on producing a synthetic version of a substance previously only available as a byproduct of nuclear waste. It is using high speed protons to kill cancer cells and has been proven to work, its just that they could not get it to be efficient or cost effective until this synthetic discovery was made. Trials anticipated in about 18 months time. It is effective for many cancers that have proven to be resistant to current treatment options.0
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@beamblossom, I do remember one element of my trial was that a CT had been done within 30 days of being approved. With the holiday season in the middle of everything for me, they counted back and realized my CT was 31 days prior so there I was having to wait to have a new one scheduled and done. Funny thing is that they finally had everything to submit, got the approval, and then an hour later a notice went out that the trial was closed to any more participants. I just squeaked in thankfully.
As for your anxiety, try some visioning exercises. Instead of thinking about the cancer growing, try visioning them just sleeping. It might even help the intensity of your symptoms when you take positive focus. Just a thought.0 -
Hello All and happy new year! I think it's safe to say we are all hopefully for a better 2021!0
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@BeamBlossom, no didn't hear the BC announcement. Must look into it. But it sounds to me to be more radiology related, in which case application to OVC might not be or be limited given the nature of our cancer. Always interesting to see progress on any cancer front though. And oh, would be nice if it has some application to our type. thanks for sharing that one.
@Readersmaven welcome. How are you?0 -
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@Fearless - Vol Mod thx for asking... I'm better this week than last. My latest blood work shows ca125 had climbed, again. While it's not a reliable marker for me, it's now over 500. I was disappointed last week but have moved on. I have a scan scheduled for 3rd week of January so hopefully it will be fine.
It sounds like your doing well...glad you continue to gather us together.0 -
Hello Readersmaven! Sorry to hear of your disappointing CA125 result, I can totally relate! Just hold out for the scan report, the CA125 is just one tool in the tool box and can mislead.1
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@Readersmaven sorry to hear the CA125 is still climbing but so glad you're able to take in context and wait for the scan. Many of my friends find is also not very reliable and continually surprised that the scans reflect the opposite of what the CA score says. I know mine jumped from 51 to 400 one month earlier this year and thankfully I was also just awaiting a CT report the next day. I went in thinking the worst only to find my scan was the best ever and the CA score was just an aberration. Let's hope 2021 will bring you that good news.1
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@BeamBlossom thx for the encouraging words. While I know that it's just one element of this journey, I guess I had hoped all would be well. That said, I'm now telling myself I won't feel as well as I do if it was truly a recurrence. Reminding myself how I felt during initial diagnosis.
I'm going to send positive thoughts your way as you deal with issues related to trial.
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And @Readersmaven I will continue these live sessions as long there is interest. In fact, looking to expand to either one on a weekend or one evening through the week...and possibly a monthly or quarterly Zoom. So we might be testing the appetite for some of that in the new year.2
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@Fearless - Vol Mod Zoom would be of interest to me, initially I wasn't sure about connecting that way, but I've found it to be a life saver during covid!1
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The psychology of recurrence is a beast all unto itself, for me, accepting this recurrence has been much more difficult than dealing with the initial cancer diagnosis.0
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@Fearless - Vol Mod...should have added that if you schedule gatherings in evenings, don't make it too late, I find I'm usually done by early evening! My poor husband spends many evenings alone as I'm asleep! LOL0
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@Fearless - Vol Mod
Zoom format for our meetings would be really great to try.1 -
@BeamBlossom I hear what you're saying and while I'm not where you are (fingers crossed I'm not having a recurrence). I'm trying to wrap my head around the possibility so I can prepare myself. I am imagining it will be much more difficult.0
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Thanks for supporting the thoughts around Zoom. Lots to consider logistically.....but worth experimenting with and nice to know you're in agreement.1
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One of the many challenges I am finding with recurrence, is what to tell people when they ask how I am doing. It seems that those outside of my inner circle expect that once you have a cancer diagnosis you treat it and then your are cured and get back to life, so they are perplexed when I say I have to continue treatment and react like it is an ominous sign. i find I am having to explain ovc 101 and the chronic cancer diagnosis.0
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Wishing you all a happy and healthy new year. Quiet night for us, highly unlikely that I'll make it beyond 10pm but we have a new years day brunch planned....means my husband cooks! Best to all.0
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@Fearless - Vol Mod for a zoom format, maybe a booking or sign up format would be useful, so as to cap the meeting size to say 6 or 10 people especially for the first few times.0
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@BeamBlossom...I had some frank discussions with family and friends following my initial diagnosis to let them know that OC is a chronic disease for just the reason you note.
It just adds another level to the journey.0 -
@Readersmaven - Wishing you a Happy New Year! Enjoy your quiet evening and brunch tomorrow! Hope to talk to you next week.0
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@Readersmaven
@BeamBlossom
My recurrence experience was really rather a big nothing. Perhaps by then I was so well read on the subject that ,unlike my original diagnosis, I wasn't walking into the unknown. There are lots of us who recur once, never to recur again. There are those like me who can live with recurrence long term, and often without much intervention for long stretches depending on what treatments/trials are available at the time. I went two years with nothing more than two pills to take twice a day..and very rigorous screening that meant any change in condition would be caught almost immediately. And now, the pills have run their course and growth has been caught at the millimeter, not even centimeter level so very early stage and I'm extremely confident this course of chemo will knock it out of me. After that, c'est la vie.....I'll be monitored and who knows what will be out there beyond the treatments I'm already aware of. Odds are same walking crossing the road in front of my house. There is no certainty in anything so just enjoy life one day at a time.1 -
Well gals, time to sign off. Thanks for being here today. Thanks for your candor and your suggestions.
Quiet new years for us. World Junior hockey...Canada versus Finland tonight (GO CANADA), then a Zoom with our son at midnight our time, since we'd never last the extra two hours for his time zone. Nothing on tap for tomorrow so I intend to do nothing but be lazy...I'm getting rather proficient at that.
And hope to see you all for our first call of 2021 next week.......
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@Fearless - Vol Mod That is a great perspective. I had to let go of the hope that I would be one of the 20% who do not recur. I can hang on to the hope that I will have a long period of NED following this recurrence. I believe the trail I am hoping to get into is my best chance of that. Treatment options are limited for carbo resistant BRCA negative.
I see we have reached our deadline for time, so I will sign off, hope you feel pretty good tomorrow now that your meds were reduced a bit. Wishing you a wonderful New Year night and peace and health in 2021!1 -
@beamblossom just remember that just before I first recurred there was nothing available other than standard chemo for Platinum sensitive, non BRCA. The only new treatment was Olaparib...to be used only as maintenance post second line chemo for Platinum sensitive, BRCA positive. But timing is everything. My trial was not just to address maintenance for Platinum sensitive, non BRCA (although I did have to have an HRD mutation in the tumor itself) but to see if Olaparib could actually replace front line treatment and then continue as maintenance. That bought me two years of relative comfort and peace. It also taught me not to project my worries out too far into the future. When it comes time there could be all manner of approaches to be considered, none of which would ever occur to you today. So focus on the now and I'm confident the longer term future will take care of itself.
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WELCOME TO 2021 AND OUR FIRST LIVE CHAT IN THE NEW YEAR.......
We were pretty quiet overall during the holidays which I attribute to the happy distractions of the season. And now we can all celebrate turning over the calendar to a new year and all of the possibilities that brings.
Not my usual chatty self today, BTW. Surgery on Tuesday to install my chest port and then chemo the next day so I feel like I've been hit by a truck today. Tomorrow my shot to boost my neutrophils.....and hope my platelets don't torpedo again, although thankfully by the time I was ready to hit the chemo chair again they'd naturally recovered. Oh the joys of treatment, eh gals?
So here we are at 1PM EST on another Thursday.....How is everyone else as you start a new year? What are your expectations, hopes, concerns? Any fun stories to share from closing out 2020?......0 -
@Fearless - Vol Mod
Happy New Year to you.
Sorry you are not feeling well today. Wishing you the best for your next treatment.0 -
No funny stories to share but... I did have my first Patient Partners in Research with OvCan yesterday. I am very excited to involved and be a part of the process for reviewing and granting funding for research and treatments for Ovarian Cancer
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Very quiet beginning to 2021 as well. Looking forward to the summer... thinking about the phrase "eye on the prize".
@Fearless - Vol Mod sorry to hear your not at your best, however I'm confident that with your positive attitude and determination, you'll get through!0
https://www.youtube.com/watch?v=Ogq_AfClon4 