Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.

Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!

Introducing myself

Hello Everyone,

I just turned 56 in August, was diagnosed with stage 4 serous ovarian cancer Sept 2017.  Had surgery (hysterectomy, omentectamy and debulking) 8 rounds of chemo and cancer was gone but recurrence July 2019. Had another surgery to remove spleen and debulking and 6 more rounds of chemo.  Was put in clinical trial August 2019 and currently taking Olaparib twice daily.  Last CT scan 2 weeks ago showing no sign of disease, yay!!!  I decided to join this group as I constantly think to myself, I'm not the only one out there, I wonder what everyone else is experiencing? I have read your stories and gives me great joy to hear that others on the Olaparib drug are doing well! This gives me hope and happiness and I would like to continue to chat with others who have experienced the same things as I have. I continue to remain positive and always say "one day at a time".  Glad to finally get my voice out and meet everyone!!!!

Comments

  • @Snowflake How wonderful you found us and welcome.  What an encouraging story you've shared. You've been through so much and to come out NED at this point is fantastic news. I will bet you and your loved ones did major "happy dancing" over that.  What trial are you on?  I've been part of the Olaparib Lite trial since January 2019, soon to be switched over to the Rosey-O trial in order to continue with the drug.  I was stage 3C at diagnosis in early 2017. By August, after surgery and chemo, I was NED and stayed that way until December 2018 when I had my first, and so far only, recurrence.  Surgery wasn't an option for me, but rather than put me on chemo again they used the Olaparib as a treatment rather than as a maintenance drug. So far, so good. My cancer is still there but shrunk significantly and I've now stabilized the past year. 

    There are so many new developments and so many more to come that like you, I just take it one day at time too.  No matter how dire things might seem, you just don't know what new treatments, drugs, approaches are just around the corner. 

    Hope you'll join us on our online live chats Tuesday nights at 7CT and Thursdays at 1pm EST and continue to use this forum to ask questions and share your journey.
     
    Thanks for inspiring us with your story today. <3
  • Hi there, glad to hear you are doing well!! Yes, me and my loved ones always do a "happy dance" over hearing CT scans show NED. It's hard though because they have me doing CT scans every 2 months, so each time I hold my breath until I hear, "no evidence of disease", then I can exhale until the next scan. I think mine is called NEO trial. Thank you for your encouraging words and so happy you are doing well! Yes, maybe I will join the online live chats, thanks for letting me know about them!  Take care and talk soon!
  • hi , I had a biopsy done in sept 17 for inflammation in uterus and found low grade cancer so hysterectomy was done nov 20 , 20  and found a ovarian cyst and the doctor thought it was nothing , well ended being clear cell ovarian clinical stage 1a , had a ct scan dec 23 and all was clear. Just had my first chemo on Jan 28 had to wait an extra two weeks because I got covid . My stress has been horrible but my oncologist is very confident it was gotten early . I have found good support groups and the support workers at the clinic are wonderful along with a very thoughtful nurse . 
  • I would I would like to hear from others how they are making out with this stage or there story .
  • jiselle16
    jiselle16 Community Champion
    Hi @Twilight63! Sorry to hear about your diagnosis, but glad to hear that it was caught early. I was diagnosed almost 5 years ago with stage 1c clear cell...and I've been NED since then :) . Had a complete hysterectomy followed by 6 rounds of chemo. I too found a good support group, which was super helpful after treatment when I was trying to come to terms with all I went through. How are you coping with the stress? I'm still trying to wrap my mind around all this years later...but with time I've felt it's got easier to accept. If you are looking for other teal sisters with clear cell, there is a clear cell discussion thread on here. You can also search "clear cell" in the search box in the top right corner. Feel free to reach out on here with any questions or if you are looking for support. If you'd like to hear more about my story, happy to share more with you. Sending hugs your way!