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 feel like it’s my birthday. My friend stopped by with a warm shirt for me and my great niece with some socks. I will be the “coolest” but toasty person in the blue chairs in my warm shirt and socks, covered with my beautiful Afghan!
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That is awesome @JoanEG I was rocking the hot/cold during chemo. Thank you post surgical menopause!
You lap up all the love you are receiving. It is a journey to surround yourself with ❤️ love and support!1 -
@Strongwoman I was so busy running to the bathroom I don’t think I was aware of temperature. Being 20 years post menopause probably helps!0
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Ah yes the multi trip bathroom day. I can say I don't recall reading a1
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About that in a book to help navigate you through. It truly can't be staee enough how frequent the trips will be. Do you agree everyone else and @JoanEG?
Now you will look fashionable on your way there.
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@Strongwoman no one told me about THAT!! Next round I will be prepared with Poise pads for the leaks while I’m running to the bathroom and I shall select the chair closest to said facility’ 🫣0
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@JoanEG I peed myself the first time. I didn’t realise how long it took to unhook me from the wall outlet. You might want to enquire about an alternate loo. I discovered they had one but hadn’t told me. From then on I wore an overnight pad and took two in my purse. Plus a spare pair of undies. Nobody told me either. I am sorry, I should have warned you.1
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@JoanEG Love all of those =- especially the socks! Can you find out where they got them or just note the brands and I'll search. Awesome gift!1
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@BellaDonna1959 I will ask her where she got them.0
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@BellaDonna1959 she got the socks on Etsy. 😊1
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So far, all I’ve been brought is iced water. It isn’t even vintage, but it has a bouquet of isopropyl alcohol with faint traces of hand cleaner.2 -
Hi all. I don’t know where I’m going to be at 1:00 today - it turned from a nice organized let’s do some chores day to a total reorganization of the day to include some must-do stuff. So, thought I would update you as far as I can on what’s been happening with me. I enlisted the assistance of the trial coordinator to touch base with my oncologist regarding a potential trial that I thought I might be eligible for. Turns out I’m not eligible and my oncologist will be calling me at some point today to explain why. I am very interested in hearing why not since I thought it was a pretty good fit. Will keep you posted when I find out.My sleep pattern has also been a bit crazy since the time change. Just not getting enough sleep and it’s so difficult to focus on anything when I’m tired during the day. Naps during the day are not possible for some reason and I end up dozing in the evening while watching TV. I’m hoping this will change when I begin treatment next week.Have a great day everyone.1
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I went see my NP yesterday, prepared for a fight, took hubby along who had a prepared speech, to find that she was shocked I had been in so much pain and prescribed long acting dilaudid and short acting for break through pain. I felt a bit silly, but greatly relieved. Note to self, do not jump to conclusions with too little evidence.1
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@Hooodith I am so happy to hear of your positive encounter with your NP. I am thankful it was a much better outcome than you had thought it would be. I wouldn't be too hard on yourself, our thoughts of how it will play out comes from past experiences/encounters. If you have been met with constant push back it is no wonder your head went there. Glad you will get some relief and as my Palliative doctor said, they are slow release so it will take about 5 days before you will see/feel that it is taking effect. Be patient and know it will feel better soon. If you are on it for awhile and you feel it is not being as effective, talk with your Oncologist and they can adjust the dose. Mine has been adjusted as we go along. You are doing great and your sense of humour is at its finest!
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@GloHo I am sorry to hear you are experiencing the inability to sleep at night as well as lack of focus. The two come hand in hand at times. I am sure you will find a solution soon for it or will discuss it with your Oncologist to solve the issue.
You are amazing at finding these trials that are suitable for your specific situation. I will be curious which new trial you found and what your Oncologist has said about why you are not a candidate for you. It will be useful information for someone out there.
I am with you with regarding napping. I hardly slept last night due to my mind being elsewhere. I will not be napping today as I get more "hyper" with the less sleep I get. I might drive my parents crazy today but that is okay, they should be used to it. LOL
We will miss you in today's chat and know we will catch up with you soon.1 -
Good Afternoon Ladies,
Here in Ontario we are having a beautiful sunny and fairly warm (for this time of year) day. What is it like in your corner of our wonderful country?
Today, I am at my parents in Belleville and we have been busy making our Traditional Turtles. Here is part of our process of making them:
We are all done now. What have you been up to today and this week?
My niece got married on Monday evening. Here is a pic of myself with my two boys.
It was unusual to have it on a Monday evening but it was so much fun!
I see that a couple of the ladies have been checking out some new trials for HGSC. That is awesome research ladies and thank you so much for sharing and informing the group.
How is treatment going? treatment options? you feeling in general?
What would you like to share today and discuss?
The floor is yours......come on in and chat away!3 -
Hello ladies
Here in Montreal the weather is nice and sunny. This is a pic from my last chemo/1st line yesterday. I also got some good news from my doctor that I have a " good" mutation " PIKC3A" that happens in about 40% of clear cell and there is a targeted therapy. She also said that when it's given to clear cell patients it simply works! So I'm happy about that to know if I need further treatment that I have a good option
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@melissa Thank you for sharing your pic. How many more chemo sessions do you have after this one? That is awesome news to know there is a targeted therapy, you are eligible and meet the criteria AND best of all it works! That is something to celebrate. Woot! Woot!
How has your week been this past week?0 -
@Strongwoman I love the colour of your dress. Homeade turtles sound amazing, yesterday was my last of 6 chemo treatments it actually went by faster than I thought it would. I am doing an MRI next week and hopefully all will be clear, dr thinks so, let's hope she's right. I'm trying to tidy up around the house before my symptoms kick in.
Getting the news about the mutation definitely gave me a pick up that I needed. I prayed for one and got one. When we first asked about the results of the testing the dr was like oh yea!!!! I have news. She mixed me up with another patient and said I had a BRCA mutation to which I shouted out YES!!!! In the office, embarassing my husband. But I celebrated too soon lol. It was the PIKC3A which is still good lol.
@Strongwoman how is treatment/options/plans going on your end. If I remember correctly you may need a nephrostomy tube? I also remember you might not want one?0 -
LOL @melissa that is funny! I could see my hubby being embarrassed as well. I am thankful that it was still great news for you regardless of your first excitement.
I don't have any news to share yet. My appts are next week to see where my blood levels are at and what they are saying. I also see the Onc next week as well. I will have more options then.
Yes, you are correct. Initially I did not want a nephrostomy. They originally wanted to do a bilateral (both sides) nephrostomy. I halted that quick as we knew that my right kidney wasn't functioning well or we were assuming but did not have the hard evidence to support it at that time. I have since had the testing done and we now know what both kidneys are doing. It does not make sense to put a nephrostomy in the right side when it was last functioning at 24%. My left kidney was last functioning at 76% and on CT scans has morphed from mild to mild/moderate to now moderate when they describe the hydroureteronephrosis on scans. With the last blood test showing that my creatinine dropped from 62 to 49 and my increased symptoms, it is something to watch. If it drops again when we do the blood test this week, there will be more testing done and determine whether we need to do the nephrostomy sooner rather than later.
Thanks for asking and I am at peace if it needs to be done now. We don't want to leave it so that it is "too late" and I won't be able to have any intervention. It will all be ok.1 -
Well Ladies. Enjoy the rest of your day. I am headed out for a walk with my Mom to forage for more turkey tail mushrooms.
Take care and hop on board when you can, need to or want to.
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@Strongwoman good luck at your appointments next week!0
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@Hooodith I’m so glad you will get some relief from the pain! @GloHo not sleeping well sucks and I hope you find a solution soon. @melissa sounds like some well deserved good news! @Strongwoman yummy turtles and I love the picture of you with your boys.I think I am all caught up now! I just got back from getting blood work. Our hospital parking is pathetic. I cruised the parking lot for half an hour! Ugh.0
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@Strongwoman
What a wonderful picture of you and your boys. Sounds like a good time was had by all. Your homemade turtles remind me of the pretzel turtles I have made in the past. YUMMY! Good luck on your tests and any resulting decisions you may have to make. Sending positive vibes your way. As you know, I am also interested in your continued updates regarding turkey tails and how they are working for you. I see you are still foraging, so that sounds promising.
@Eileen Just a quick note to let you know I’m thinking of you.0 -
@Strongwoman I spoke to my oncologist yesterday and it was confirmed that I was ineligible for the clinical trial because I have had too many lines of treatment. I have included a blurb under clinical trials that provides details. So, onto standard of care weekly Paclitaxel starting next week.Now I have to go figure out what I’m going to do about the Dex pre-treatment meds. My oncologist didn’t mention it and it completely slipped my mind to ask her about getting a prescription. Since my treatment is on Monday, I do not have any wiggle room to get the meds…it has to be settled today. I do have a couple left from my treatment in March, but I’m not sure if they are expired or not, otherwise I would just take them. My oncologist isn’t in clinic today and my local chemo clinic is open today, so I am going to try our telephone nursing triage line to get it sorted out. Good grief…if I hadn’t been through this and remembered about the 12-hr/6-hr Dex, I would have shown up at my appointment totally unprepared. Although I think they can give Dex via IV but that just adds more wait time to the whole process. It’s still an option if all else fails.1
