Hi - I have been on Olaparib since Feb 2021.  Would love to chat with anyone who is also on it. 


  • Hi @Camper62
    We have lots of members who are on it or have been on it, myself included.  Some, like me, as part of clinical trials and others using it for maintenance as has been approved for treatment use.  I'm sure there will be others responding to you but in the meantime, if you key in Olaparib or Lynparsa (its trade name) in to the search bar in the upper right of your screen, you'll pull up the discussions and comments on that topic that currently exist. You might find those useful.

    I was on the drug for almost two years, but as mentioned on a clinical trial to test its possible effects as an actual treatment for recurrence in patients who are high grade serous advanced, in recurrence but not yet treated, platinum sensitive in first-line treatment but not BRCA positive....instead carry an HRD genetic mutation.  That said, things like side effects are fairly common across all uses of the drug so if there is anything specific on that front I can share for you I'd be happy to. 


  • RobinDRobinD
    edited November 2021
    I'm in my 7th month of Lynparza Olaparib. I'm surviving but I have some really rough days. Extreme fatigue. Aches and pains in mid back, joints. I'd love to know if this is normal for others. I'm grateful that there is a drug that is available. But also pissed about quality of life. At my first check up in August, CA125 was 10...Yippee! Next week is checkup two. Nervous. What are others experiencing?
  • Hi @RobinD
    Congratulations on your last CA125. But sorry to hear you're having some side effect challenges with the Olaparib.

    Have you discussed them with your oncologist?  If not yet, keep a diary of what you're experiencing to share.  It's very helpful to them in assessing your needs.  I had a very similar reaction at the outset of my use of Olaparib..really rough lower back and joint pain.  We tracked it for 2 months and when it only very marginally improved I was moved from a 300mg dose to 250mg and that made a world of difference. 

     I didn't have any added fatigue but I did notice the improvement that I had been experiencing before I started on Olaparib stopped and the that level of fatigue never changed throughout my use of the drug, even after the change dose. It wasn't a huge issue for me though and honestly thought some of it as just good old aging related. 

    I do hope you find some relief from the side effects.  For me the drug was not maintenance, but part of a clinical trial and it was truly a miracle for me for almost two years.  Keeping my fingers crossed for you that your next CA125 shows you continuing in that 0 - 35 range we all pray for.

    Best wishes and do reach out any time we might be of some help.
  • I have been on olaparib for a month.   I feel like I have no stamina an the nausea is always there even with anti nausea meds.  I keep hoping it will improve but am feeling discouraged.   Any tips?
  • @LynneA
    I was on Olaparib for two years. The first month or two had some challenges as my body adjusted to it.  For me, ,mostly joint and lower back aches and ongoing fatigue.  What was helpful was a journal I kept daily describing what I'd done that  day, what I'd eaten and what I was feeling morning, afternoon and evening.  Not my brilliant idea LOL. I was on a clinical trial to tracking like that was part of the process. It was enormously helpful to my oncologist in determining what might be normal recovery issues and those that might be directly a result of the Olaparib.  After trying a few hit and miss approaches (like eliminating certain foods or changing up my exercise routine) to see if they had any effects on the symptoms, and letting it go a couple of months to see if the severity of side effects would lessen as I adjusted we decided to change the dose. I started at the max of 300mg a day and dropped it to 250mg and that did the trick. The aches disappeared.  The fatigue lessened but never totally went away.

    The key for me was really ensuring my cancer care team was well informed, not just on the symptoms but also on the severity given the huge difference between tolerable and intolerable.

    Hope that helps and good luck on the drug.  For me it was a miracle keeping my cancer at bay for so long. 

  • What happens after 2 years? Is there a reason for that time period? Never understood. Are you vulnerable again after that?
  • BTW I've had fatigue be my biggest side effect as well. And I feel cold a lot. Nausea has mostly disappeared. I'm good in the am, walk every morning--then about 3pm I'm done! I have noticed that it's about 5 hours after I take my pills that I feel the worst. I take at 10am and 10pm...
  • @RobinD
    Generally where there are time limitations on taking a drug they relate to the either the manufacturer or provincial funding models.  I know of women who were involved in the original Olaparib trials out of the UK 18 years ago and are still on the drug with no evidence of recurrence.  In some cases the pharmaceutical company will fund all or a portion of the cost for a period of time.  Same applies to provincial funding models but each province is different.  Your oncologist should be able to provide the appropriate reference to the time period you're asking about. If it is financially driven and means at the end of two years, if the drug continues to be successful, funding reverts to you then that is a discussion to be had with the financial navigator at your cancer center.  Beyond private health insurance coverage or personal liability, there are often other means to get the cost of the drug covered for a longer duration.  

    As for your side effects, as I suggested to LynneA, ensure your cancer care team are aware of the issues you've described. They could just be continuing effects of chemo.  Fatigue, some nausea etc. often continue on post primary treatment; often improving over time but sometimes become chronic and need management.  Other times it is the Olaparib so your cancer care team should be able to find ways to help mitigate or control the side effects or just help manage your expectations.  After all you are taking ongoing medication so there will likely always be some level of side effect. It's being able to distinguish between the tolerable and acceptable versus intolerable effects.   Often those disappear on their own as you body adjusts to the drug.  Sometimes a change in dose helps.  

  • I have been on olaparib for 9 months.  My dose was reduced after the first 2 months as my hemoglobin kept dropping requiring transfusions . But since then, I have been feeling basically good.  Thankful for the drug.
  • I will have been on it 2 months next week.   I  sleep 8 plus hours at night and still have a 2 hour nap.   Feeling like all I do is sleep.   Nausea is some better but I still take ondanstron in the morning and gravol at night.  Wondering if this is reason enough to request a reduction in dose.  I really want to get back to work etc.
  • My blood work has been ok, I'm at the bottom range for hemoglobin and WBC but not dangerously so...I can live with all of this, I just worry about after...will the OC just come raging back once I stop? Is their science on that?
  • I give a sigh of relief every month when my oncologist says my blood work is good.
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