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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@Fearless - Vol Mod So good to hear!!! I'm with you, whatever it takes to stall a recurrence.1
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Good morning @Fearless - Vol Mod! So glad to hear everyone doing well and enjoying this beautiful spring weather.
Crazy week here! Yesterday heart test for the Caylex. Today radiology guided Cortizone shot for the shoulder and as you know we are moving after 24 years and packing and organizing are in full swing (besides working). Movers come June 8th. I will find out the same day if my Caylex is working so cross your fingers!!
Yesterday we found out the place we are moving to will now not be ready until at least September!! So I am on to Plan B, C, D and maybe E. Lol! Luckily we have options with friends (one has a condo in Toronto they aren't using) and family but which choice we make will depend on whether the Caylex is working (every 4 weeks) or if it isn't
and I go to probably weekly Taxol. Just because there isn't enough stress! Regardless it will all work out and we will manage. Certainly never a dull moment!
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@CountryLiving hi! There was 16 ladies on zoom, from across Canada, Including Halifax, Montréal, Toronto, Manitoba, Edmonton, Vancouver, to name a few.
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@Annie1950 I too go to Princess Margaret. They have a whole wall of pamphlets but there should definitely be ones from OCC. My Dr commented to me about how good OCC is and it should be referred to more. FYI she didnt mention it to me until I commented about how I found it supportive.1
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@Taita
Welcome and wow, for sure you have a lot on your plate. What a disappointment with the delay in your move and having to find a stop gap. At least if you have to locate somewhere away from your normal cancer centre it's fairly easy to transfer the administration of your chemo. I was originally treated and started my chemo at PMH, about 3 hours+ from our farm in PEC so my oncologist suggested we transfer the rest of my chemo here to Kingston, only 40 minutes away. As he said, chemo is chemo...he decided what and when and who administers is pretty well irrelevant. And he made a commitment to take me back to PMH if I found I wasn't comfortable with the KGH facility. At the end, it was a great decision to switch.1 -
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@Fearless - Vol Mod
That is a great idea! I am a patient at PMH and have my treatments locally, I could transfer back if I need to. Thanks for the advice!0 -
@CountryLiving
I did a debrief with Tracy yesterday on the first Teal Tea....I'm not signed up for the this round of them. She told me there were about 17 on the zoom, from all around the country. That's why the timing is what it is...to try to accommodate all the different zones. And no, it's not facilitated or guided. I think there's one at 3 EST today one might still be able to get into if interested. But I believe there will be a June schedule coming up.1 -
@Taita @Fearless - Vol Mod I started my chemo in Calgary, 5 hours away, so I asked if I could have it done at my local hospital 25 mins away, and they agreed. Was so much easier! Our teams are so accommodating
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@Sylviequebecbc
Great recipe but suggest checking with your medical team before trying it. It looks pretty high fibre and for some, especially anyone with some diverticulitis in the colon, it could be problematic. Must say though my husband will love it.1 -
Well it must have been my Dr. as I asked to do my chemo at a closer hospital and was denied. I knew there was room at my local hospital but I feel my Dr did not want to put in the time and work required to change hospitals. Oh well it is all over now and I have learned so much.1
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Have to go, have a wonderful week everyone 😊1
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Yes, in today's world where there is so much stress on the medical system I'm constantly amazed at how accommodating our medical teams are to helping make this journey for us as easy as possible. I have learned not to be afraid to ask for something...if it makes sense they'll usually go through hoops to deliver for you. So grateful for the care I've had these past five years.1
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@Annie1950 - Thankyou. Such has always been my life
I am truly fortunate that my side effects from the chemo have been quite mild, not to mention I am well supported. I was very interested to hear about your bout with bowel obstruction. They put me on a low fibre diet a couple of months ago to avoid it but it is always a worry. My biggest tumour is right up against the bowel. So glad to hear you did well and are back on track. I will worry less! Thank you.
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@Fearless - Vol Mod
I wanted to mention that I received a call from OCC yesterday to say thank you for the donation. The last campaign had matching funds so I was sure to get it in on time. We had a nice chat and I love that they take the time to call donors (I am sure it is random and I just got lucky). We are surrounded by people who care and take the time to say thank you. That is pretty special.0 -
Bye ladies! Have a wonderful weekend and will chat next week. 0
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@Taita
If you haven't done a search there are a number of discussions the past few months on Caelyx side effects and how to manage them you might find useful. Just enter Caelyx in the search box at the top right of screen and if that doesn't pull up anything let me know and I'll try to link them them to you. But good luck with it. I have a good friend on it the past few months. From what I understand it has a bit of a delayed effect so don't be disappointed if the first tests don't show much if any progress. It tends to kick in, for some, a bit later in the cycles. She was a slow starter but now getting some really good test results.
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Good bye ladies
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Well ladies, time for me to sign off today. Think a nap is in order right now. Well, when is a nap never in order LOL. For anyone wanting to check out the Teal Tea, there might stlll be capacity for today's zoom I believe you can register for the link right up to the 11th hour if there are openings.
Thanks everyone for joining us today....great news for many, some good suggestions, and Taita...good luck with all the balls you have up in the air.
Hope to "see" you all again next week. Big hugs to all for now,
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WELCOME TO TODAY'S LIVE CHAT, LADIES.
All I can say is ....oh nooooooooo, it's June already! But in the interests of my cup staying half full and not half empty, I can feel so much good coming our way. In most areas the Covid restrictions and speed with with which folks are getting vaccinated is laying the ground for judicious reopening and some return to normalcy. And help is on the way for those provinces still being challenged at keeping the virus contained. And as I talk to our members across the country, almost everyone has been reporting such wonderful weather so far...the perfect entre to summer. Today, for us in SE Ontario, rain but so needed by our farmers...and saves me lugging my big can this morning to tend to my newly planted herbs.
A quick story of hope to share today that I thought some of you might appreciate. Three years ago I met a lovely gal in our local support group; one going through treatment quite unsuccessfully aside from also having had to hit lupus head on, has Lyme disease, and a raft of allergies to contend with ....along with being platinum resistant. So every month we'd see P on something new that wasn't having the desired effect, getting more and more frail and, honestly we feared the worst for her. Then almost a year ago I bumped into her in our clinic where she had been on a new trial for few months....one that combined Olaparib with a new drug targeted to platinum resistance (sorry I don't know the name of that drug)..too soon to see any impact from the trial to her condition but always hopeful. Well, my friends, I am happy to report that a year in and trial almost over now, her CTs and CA125's show a COMPLETE RESPONSE.....ladies, her CA125 has been in single digits and her CT's have shown no evidence of for months. What happens next for her once the trial ends I don't know. What impact that has on bringing a new drug to market, one focused on platinum resistance I don't know...she is but one of many making up the trial data. But for one woman, it's a miracle and hopefully not short lived. And for those who are platinum resistant, an example of the newer focus in research to address that problem, focus that's been much needed for a long time. Hope is truly never ending!And on that note it's 1pm EST and I'm here if you are. I've said my hello today.....how about you?
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That's for sharing this great story...really shows there's always hope, just need to figure out what might work.0
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Hello from a nice sunny day in Nova Scotia!
@Fearless - Vol Mod, great news about the teal sister showing such a good response to the trial treatment!0 -
Not quite the same, but I met a woman last year when I was just beginning chemo and she shared that she had had recurrences annually for the last 5 years. She was so animated and positive, very inspiring.
I thought about her just recently and am keeping her positive attitude in my mind as I wait for updated scan on Tuesday and follow up results at end of week.1 -
Good afternoon Ladies,
Wonderful news for your friend and for all of us. She must be delighted. As they continue to research and experiment different options and treatments I'm sure the future outcomes will be very optimistic.0 -
We'll definitely be keeping our fingers crossed for you @Readersmaven. Let's get prepared for a happy dance party in the near future, eh? Keep us posted.
Hi @Tinazzie Glad to see we're sending some of our nice weather your way.
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Hi from Kimberley... @Fearless - Vol Mod thank you for sharing this story. Does bring me some hope! I have also platinum resistance , so my future may be brighter if this medication comes to me!1
