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).

Survivac +Cyclophosphamide

Options
Hello!

I was Dx'd stage 4 OC in June 2020. Had chemo, debulking surgery (9 hours) more chemo and then Avastin. NED by December and CA125 down to 8 from 3400. I thought it was a miracle!  

In March 2022 my CA125 numbers started to climb and chemo was scheduled. In the meantime, I was assessed for PESCO clinical trial and qualified. I started it in May and next week have a CT scan to see if it is working. My CA125 continues to rise, 95 at June 15. 

All this to ask if anyone else is in this trial? I'm anxious about when/how to decide if I should return to chemo. The masses have grown but I'm not having any symptoms from the cancer. The trial side/after effects are mild, fatigue and ugly wound at the injection site.  Nothing compared to the chemo side/after effects! 

Any thoughts are welcome 
CECE

Comments

  • Strongwoman
    Options
    Hello @CECE67
     I am sorry to hear of your recurrence.
    I am not in this trial but will be very interested to hear of your progression through it.
     Would it be correct to say that you have high grade serous? Or do you have another type? 
      What does your team say about when or if chemo may be back on the table for you?
      So happy to hear that the side effects are mild compared to chemo. That must feel wonderful to not be experiencing any of those side effects.
      Someone in the group may also be in the trial which would be interesting to hear from them as well. 
      Please keep us posted along the way. :)
  • CECE67
    Options
    @Strongwoman, hello and thank you for responding.

    Yes, high grade serous. It had spread all through my abdomen and my belly was so bloated, I thought it was going to burst! My family doctor acted quickly and I'll be forever grateful to her. I had a full hysterectomy, gall bladder and spleen removed, piece of liver, and piece of diaphragm removed, and peritoneal cavity scraped.

    This week I'll find out this week if the trial is working for me, if no, I can switch to standard chemo. The new masses are on the abdominal wall and between the diaphragm and tail end of pancreas. Honestly, I will delay chemo as long as I can.

    I will post an update next week 😊💪🏽
  • Strongwoman
    Options
    @CECE67
    What a journey you have had!  That is quite the surgery.  Glad to hear you recovered from it.  
    It sounds like you have a good attitude towards treatment which helps a lot as one goes through it.
    Please keep us posted as to how things are working when you are ready to share the news.
    Looks like you are staying strong as per your emojis!