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!

clinical trials

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Comments

  • @Sandi6

    It was so nice to meet you and hubby in person and to be able to chat face-to-face. You look very healthy and happy and that curly hair suits you! Congratulations, again, on your 1-year milestone. 

    After chatting with you, it dawned on me that your journey from diagnosis to clinical trial is very different than mine and I was wondering if you would be comfortable sharing your journey with us?

  • A STUDY OF THE PKMYT1 INHIBITOR RP-6306 IN COMBINATION WITH CARBOPLATIN AND PACLITAXEL FOR TREATMENT OF RECURRENT TP53 OVARIAN AND UTERINE CANCER (GYNEREP)

    PHASE 1/2 (21-DAY CYCLE)

    6 CYCLES ONLY

    CYCLE 3

    So…Cycle 3 was delayed because my neutrophils are too low.

    We are trying to arrange treatment for next week. Chemo does not have a chair for me so I am on a wait list and will find out Thursday or Friday when they can fit me in. Of course, there is no guarantee my count will be up to trial requirements by next week, so not sure what will happen in that case. Maybe an injection or another delay?

    In the meantime, I’ll share some of my other results with you.

    White blood count is very low but was not a determining factor in the delay.

    B12 has increased to just above normal. Dr recommends I continue with the supplement to bring the count up more.

    CA125 decreased again. It went down 1300.

    Biopsy Pathology Report indicates that there is dead tumour tissue or, as they put it, background necrosis suggestive of treatment effect.

    CT Chest report is stable - no pleural effusion, no new progressive disease.

    CT Abdomen/Pelvis also reports stability with decreased ascites.

    My thoughts

    Overall, positive reports and it appears the meds are keeping the disease stable.

    From previous experience on these drugs, I was expecting issues with my neutrophils and platelets, just not after Cycle 2. My platelet count seems to be remaining stable which is good and one less thing to have to worry about.

    The Dr goes through my entire blood report with me and explains why they are not concerned with some of the counts. They can tell they are a result of the meds and that there is no damage to my organs. Amazing!

    Delays are always a concern and difficult to deal with for many reasons.

    1. There is a break in the treatment schedule.

    2. I have to wait for a last minute chemo booking and try to make accommodation arrangements because I travel to Toronto for treatment.

    3. A delay changes everything in your personal calendar, including medical appointments my husband has, fun things that you already booked around your current schedule have to be cancelled or rearranged.

    4. Holiday planning with family and friends…Christmas is coming!! This delay may actually work in my favour since I had a treatment scheduled for New Year’s Day that will now be pushed to the following week and it won’t interfere with Christmas either.

    I mention the delay issues because the nurse and Dr were like…we have to delay. There was no indication that they thought you had a life or anything better to do outside of your cancer schedule and how much the delays affect your life!! While there is nothing that can be done about it, I just felt like they didn’t have a clue. On the other side, you have to be flexible and prepared for these things as best you can. Delays do happen.