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 (




  • A trial might be a good alternative....have you contCted princess Margaret in Toronto?  They might be able to giveyou ideas.  It's certainly a crazy unfair world
  • Tell your story to your local news TV.  Reach is out there but you have to make your case be known.  I hope n pray you can get the med
  • Flowergirl
    Hi @maggiemae... I'm trying to determine from your above post that your treatment has ended and have you discussed the clinical trials or options with the DR team?

  • Hi Flowergirl, Yes my treatment has ended but we don't know yet if I am in remission or not. I've completed 2 surgeries and 2 rounds of platinum based chemo (6 cycles after my first surgery in July 2018 and 3 cycles after my second surgery this past January).  I had my last chemo treatment on April 18th.  My most recent CT Scan 3 weeks ago showed a small remaining area of nodularity but they weren't sure if that was cancer or just scar tissue from surgery.  My oncologist has prescribed Olaparib but I'm having trouble getting it covered.  I've not been made aware of any ongoing clinical trials.  Are there still some taking place for Olaparib?
  • Hi @Courtenay, thank you for those suggestions. I'll give them a try!
  • Flowergirl
    Hi again @maggiemae
    Please check in with your DR team about this one, or any others that are open in your area. The DR team should be able to chat with you about the options and if you would be eligible:
    There are 4 cohorts and depending on the genetic profile and if one is eligible, and if any of the cohorts are open or full.
  • Flowergirl
    and here is the info from a previous post from @Marilyn

    To gain access to Lynparza, the drug needs to be prescribed by your doctor. The physician or you, as the patient, would then need to contact AstraZeneca’s Patient Assistance Program for information on financial coverage, including coordination of coverage at 1-877-280-6208.  Your doctor should have all this information and know how to go about it.
  • I hope Maggie MAe can be accepted into that trial, looks like a good one.  Flower girl, do you know of any clinical trials for people who have been on lynparza and it is no longer working?
  • Flowergirl
    Hi @Courtenay
    You can start a search here:
    Trials can be a tricky issue- again, a discussion with your DR team to see what is available in your region and what may or may not be right for your situation/condition/course of action/treatment
    Wishing everyone the best and yes, be vocal with your Dr team about options, what is best for you.
  • Jule_P
    Hi! I took Lynparza for about two years with no side effects until I relapsed. Still platinum sensitive though. 
  • I hope Maggie MAe can be accepted into that trial, looks like a good one.  Flower girl, do you know of any clinical trials for people who have been on lynparza and it is no longer working?
  • Hi jule
    Sorry lynparza is no longer working for you.  What are you taking now?  If I recur I  don'tknow what to take next as I'm resistant to carbo.   
  • Hi all
    Has anyone on lynparza  had radiation done on stubborn spots that won't go away?  I've been on lynparza for 19 mo and still have a few spots all less than 2 cm.  It is worrying because not sure how long lynparza can keep things at bay.  
    Hope Maggie got access to lynparza?
  • Hi Janis. I am BRCA negative/Wild. I finished my first recurrence chemo in October 2018. I was lucky a clinical trial became available shortly after that for Lynparza/Olaparib for my type of cancer (3c high grade serous) in London, Ontario for those who are BRCA negative. It is a phase 3 study called the Opinion Study. Only 250 people worldwide are on this trial. Unfortunately it looks like I will going through my 2nd recurrence soon. My CA125 started jumping in June and I went from 6 in October 2018 to 27 now. I was 18 last month and 11 before that. My Oncologist does believe a recurrence is coming but the Lynparza/Olaparib is slowing it down, which is what we had hoped it would do. I get a CT scan every 8 weeks while on this trial. So far nothing has changed, but Oncologist says your CA125 needs to be pretty high before the cancer shows itself on the CT scan. I am hoping it takes a few more months before this recurs. Of course, I hope it doesn’t recur at all but this is the nature of this disease it seems.
  • Flowergirl

    From OCC tweetpost:

    Drug access news: Beginning August 26, 2019, patients with advanced BRCA-mutated high-grade epithelial ovarian, fallopian tube or primary peritoneal cancer who meet eligibility criteria will have access to Lynparza (a PARP inhibitor) free of charge for a maximum of 24 months or until disease progression on treatment in their FIRST line of treatment through the expansion of the AstraZeneca & Merck Oncology Patient Support Program. 

    Patients should receive Lynparza no later than 8 weeks after completion of platinum-based chemotherapy. This Program will run for 12 months (from August 26, 2019 – August 26, 2020, inclusive) or until public drug plan listing in the patient’s province, whichever comes first. To learn more about whether you may be eligible and to enroll in the Program please speak with your oncologist.

  • This is FANTASTIC news. Thanks for highlighting it @Flowergirl
  • Hi all,
    Thanks for getting back.  I am still on the lynparza, it's been 22 mo BRCA 2 somatic +.  There is slight progression on spots on spleen, liver, and lung (.1 mm which is very small)  So my Dr is keeping me on to yes, like you Maria, help slow things down.  I am just ever so grateful to have had the past almost 2 yrs with virtually no side effects!  I am now wondering what's next for a person who's had 3 regimens of platinum, still a bit sensitive, but has bad reaction (blood in urine).  I cringe at the thought of taking doxil, but may have to.  those meds seem so caustic now.  I am hoping against hope researchers will come up c another med after lynparza.  All the best to you all,
  • No coverage for brca neg girls yet