• Thank you. I’m not sure what the longer term plan is. Just keeping my fingers crossed. 
  • Hello all, just checking in on the  Lymparza experience. I have been taking it for approx. 6 weeks, the side effects have been mainly fatigue and some (manageable) nausea. On my first Lynparza monitoring visit, the CA125 had dropped from 542 to 377, but yesterday’s  (2nd) visit showed a worrisome increase to 649. My gyne-oncologist has ordered a CT scan and will keep me on the drug until there is objective evidence to discontinue it. As a BRCA ll positive patient, I have put hope in this drug - should be my best bet. Have to say that it really helps to have a kind and compassionate oncologist who takes me through the science and the options in these instances. 
  • I am also BRCA positive and started full dose olaparib the beginning of June as part of a drug study. The first CTscan showed positive results as the tumour had shrunk by almost half. The second scan done eight weeks later showed no change and the last scan done two weeks ago has shown that the tumour has grown and I am out of the study. We had great hopes for this drug but all cancers are different. I have been on the US Ovarian Cancer site Teaminspire and radiation is still used for some ovarian cancers. For me time is  essential as the tumour is growing and compromising my colon .I really can’t wait to see if chemo will work and is so how fast. The other option might be surgery. I have a PET scan scheduled for Saturday and see the oncologist on the 18th. So big decisions to be made.
    Be positive for your outcome, we all react differently.
  • Wishing you the best possible outcome @jsullivan33 for sure.
    Thanks for your update @Teddybear - for sure it is good we are being looked after and wishing the same for you as well.
  • Sorry you are progressing on lynparza.  Sadly I think the same is happening to me.  I've been on for just over a year, but abdomen is getting fuller, more sore, esp after a meal.  I get a scan soon, which will help, as ca125 is still low at 8.    
  • Nice to hear from you Courtenay, albeit in uncertain times like these. Always wait until the objective evidence is in, dear girl - as you may be thinking too negatively. Having a clear skies CA125 like yours is a good sign.
  • Your kind words are appreciated, @Flowergirl, @Courtenay and @Teddybear. It's great that we can come to the Dialogue for support. cheers 
  • For sure - we will take all the support we can get and give!
  • Thanks all for the letters of hope and inspiration.  No I can't complain.  I've been on this med for a year, and have appreciated every minute.  I am thinking maybe a partial/slow progression, so doctor may say I should still stay on it.  But I am thinking maybe try something else.  I'm hoping to take the survivin vaccine c ketruda trial which is offered at princess margaret, and I think calgary.  then possibly returning to lynparza afterwards or during this treatment.  Just wondering if it would still work...I've heard of people being off lyparza for a few years, then going back onto in or something similar like niraparib or rucaparb.  
  • Good to hear you are doing ok @Courtenay
    Do you happen to have a link to the trial info for the vaccine c ketruda ?
  • Hi Friends and Flower girl, thanks for being such a helpful resource.  I saw my dr/scan yesterday, ca125 is still 7 and disease is stable, nothing new!   I am so happy because I thought I was progressing because of increasing tummy bloating.  I do feel more fatigue lately, maybe the time of year or  it's been a year on drug.  You're right JSullivan, don't jump to conclusions too quickly.  The survivin trial may have openings in Toronto and Calgary.  Or they may know of other pertinent trials!  Go to and type in the study #'s
    02785250  survivin c epacadostat  
    03029403  survivin c pembrolizumab

    Has anyone considered letrozole as maintenance?   You must be Estrogen + but most of us are.  In BC they are still working on getting TILS immuotherapy for OC up and running.  Hoping it will be soon, as they've stalled for over two years now.....They just received a grant from a generous donor for 250k as well.  
    Stay hopeful,

  • Hello @Courtenay - you are welcome - those are good results and here is hoping the fatigue lessens overtime.
    Thank you for the info on the t rial - will check it out.
    Yes, seems treatment options vary by province and by condition/stage/type/status or disease - all unique just like us!
    Reminder to use the @username - like @jsullivan33 @Courtenay within the post to send an alert to participants within the topic (no worries if you forget as we can pop back into the post when logging into the chat site the next time) :)
  • @Courtenay I can relate to your concern of recurrence due to increased symptoms. At least your symptoms had some relevance. 
    Can anyone else relate to having a hangnail point to recurrence instead of maybe, say, a hangnail? In the words of a therapist friend” is it possible? Yes. Is it probable? No.”
    this disease can make your head spin. 

    As for Lynparza, I am back on the med after a 2-year hiatus. (Was on clinical trial previously). The fatigue comes and goes. I think you may be right @Courtenay and the time of year and stress of the season may be triggering more lynparza fatigue. God bless. 
  • Hi Unpicknot
    I didn't know one could retake lynparza after a 2 year break, that is good news.  There are also rucaparib and niraparib both having slightly different uses but are similar to lynparza.  Yes, the researchers are coming out with many new meds/combos,  so keep spirits up!  There is always hope,
  • @Courtenay. I participated in a clinical trial for Olaparib (Lynparza) for 2 years with NED. As part of the trial contract, at the end of 2 years I came off the meds I had been taking. It was a double blind study and I could have been on the placebo. One month of the meds and my CA125 started to creep. I had experienced moderate fluctuations before so it wasn’t until we had a definite trend going on that we were suspicious of recurrence. It took 14 months for the official recurrence diagnosis. As part of my decision process for further treatment I was unblinded from the study and found I had indeed been on the med Olaparib. 
    It is unusual to be back on Lynparza. My case is somewhat unique in that regard. I advocated that the med had not failed- I had merely come to the end of the trial. In fact, I argued, the medication had held my disease stable at the microscopic level. Stable and microscopic. I can live with that. 
    So a we consulted with Astra Zeneca and a  treatment plan was put in place. 
    And so now, 8 months later after a second full round of chemo, I am again on Lynparza and so far we are good. CT Scan in January. 🤞🏻
  • Hi Upicknot, It seems if you were getting good results on the trial they (astra zeneca) would have offered you the drug after that.  did you get tumor profile?  the drug of course is free if brca +.  I hope it continues to help and that you have a good scan result in jan.  
  • @Courtenay - thanks for the good wishes. I hope I remember to update everybody :wink: Darn Chemo brain!

  • Hi everyone and hope you are enjoying your holidays!!

    I have a question ... is there anyone on Olaparib that does not have the germline or somatic mutation. I am of the wild type and have had absolutely no success getting this drug. I have Green Shield insurance which will not cover the drug unless you have the BRCA mutation. Also no luck with AstraZeneca.
    I'm wondering if I am missing something?? OR is there anyone who has the wild type diagnosis who is on a PARP inhibitor??

    Thanks so much for taking the time to read this and respond!
  • Hello @Janis - are you eligible for any of the clinical trials and can your DR team assist in anyway?
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