OVdialogue – consider joining our team in the role of Community Champion. 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).
• A personalized experience, just for you: your member homepage displays the content you engage with most, including a resource library where you can engage in discussions directly related to the content.
• Have conversations in real time: You can respond to notifications and personal messages from people in your community directly from your email inbox; plus it’s easier than ever to return to the platform.
• Stay up to date on the latest events: upcoming activities will be listed in an events calendar right here in the platform
During this time of transition, private messaging within the platform will be unavailable beginning January 22, and posting will be unavailable beginning January 27.
We look forward to seeing you in the refreshed platform!
Let me introduce myself.
Hi. I was diagnosed in December 2020 with stage 3C HGSOC. Had chemo and surgery. Was on zejula for 11 months. I’ve been on some type of treatment since June of 2022. Tmr I am to start Topotecan. There doesn’t seem to be much info on this drug. My onc says this is the only thing left for me. I’m so discouraged and scared. Less than a month ago I found a lump in my breast. The biopsy came back as OC.
Comments
-
Hello Jayne!
I never had to be on a maintenance drug personally, so I have no comment about Topotecan. Hopefully someone else has something to offer?
Where is it that you live?
I'm in Calgary.
What is the care plan with the lump?0 -
I live in Ontario, Canada. Since the lump is ovarian cancer we are just going to proceed with the Topotecan treatment.
1 -
perhaps the resources listed on CCS page could help? Cancer.ca
I can’t seem to paste the link? But they say check Drug product database on Government of Canada site
0 -
Hello @DiamondGoddessYYC I'm glad you found this group. It has been immensely helpful. Welcome to the group nobody wants to be a part of. From your bio I see you have clear cell. So do I same stage. I was diagnosed in June 2023, had surgery July 2023, had the 6 rounds of carbo/taxol, like you I reacted to the paclitaxel pretty bad, but got through each round with the help of reactine.
Chemo was completed by mid November 2023 and I've been on surveillance ever since with CT scans every 3 to 4 months and blood work as well. I think it's worthwhile to mention that I had my tumor tested back after surgery and I have a targetable mutation PIK3CA. Have you had your tumor tested?
Fingers crossed for your upcoming scan. Hopefully your pains are just pains. I've been taking Lyrica for nerve pain the past 6 months but not for my feet/hands but rather for the side of my abdomen. I had a gigantic bruise after surgery and I'm pretty sure the nerve pain is from that. I'm in montreal not Calgary.. sucks for me
1 -
Hi @melissa!
I typed out a response and now I don’t see it?!
if you ever come West, would be fun to meet up!I did have my tumor tested, but nothing remarkable noted
0
