Lynparza/Olaparib

CourtenayCourtenay
edited June 25 in Just want to talk
Has anyone had much success with this drug?  I am thinking of taking it as I am BRCA positive
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Comments

  • Hello Courtenay I have to say I do not know much about it.  I am reliant on my oncologist and my GP and gynaecologist to assist me with medications as there are many.  There is also Avastin.  
  • Hello Courtenay @Courtenay I post a comment but forgot to attach the ampersand connection to notify you.  That is what this is for.  
  • Hi @Courtenay.  I see that you have not had many comments about peoples' experience with Lynparza. Are you still looking for information about the drug?  Lynparza is one of a new class of drugs called PARP inhibitors.  PARP inhibitors interfere with the ability of DNA in the cancer cells to replicate itself.  This can lead to cancer cell death and has been found to be more effective in BRCA positive cancer.  The benefit of Lynparza is that it has been shown to increase the length of remission - the time between the end of one round of treatment and when the disease recurs.  This is called "Progression Free Survival" or "PFS".  I can give you more information about these results if you are interested. 

    At the national level, Lynparza has been approved for use in the treatment of BRCA positive recurrent ovarian cancer and pubic funding of the drug has also been recommended specifically for those with platinum-sensitive, relapsed BRCA-mutated high grade serous epithelial ovarian, fallopian tube or primary peritoneal cancer who have completed at least two previous lines of platinum-based chemotherapy.  However, even though public funding has been recommended, each province now decides whether or not Lynparza will be funded by their specific health insurance program.  This is why funding may be available in some provinces but not others.

    You don't mention whether or not your doctor has recommended that you take Lynparza or whether they have discussed with how it would be paid for.  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.

    Do you have any other specific questions?  What are things you are considering as you make this decision?


  • Thanks Marilyn.   I found that very helpful for myself to ask my doctor about at the next visit.  
  • I've been on lynparza, for almost three weeks now.  The side effects are much easier to handle than other chemo drugs.  I just hope it works.
  • Hi @Courtenay.  Glad to hear that you are finding the side effects easier to handle!  I hope it works too!  I am @mentioning a few people as I believe them may also have some experience with olaparib @Vivig @birdee ; @AndreaB
  • I have not been so lucky with lynparza   nausea is horrible
  • Andrea, i don't suppose ginger would help with nausea?  Maybe it will get better once your body grows used to the stuff.  How long have you been on, and do you think is effectual?  
  • Hello AndreaB I was thinking that there are prescription anti nausea out there that your doctor can give you.  I have had it with the chemo treatment I have had in the past.  It has been very helpful.  It is called ondansetron under the brand name Zofran.  Not sure how it would pair up with Lynparza but could be asked about.  
  • That drug is very constipating, but I don't know what else is out there.
  • I’ve just finished my second round of chemo, this time 9 treatments of Carbo/ Taxil. I’m not NED this time but the tumours have shrunk a whole lot and many are gone. My Oncologist has prescribed Olaparib as maintenance therapy to hold the cancer at bay. I don’t have a germ line BRCA mutation, but apparently it can work in about 24% of women without BRCA.  Not great odds, but I have my fingers crossed. 
    I’m wondering about side effects as I’m told they can include relentless nausea, diarrhea, joint pain and fatigue. Anyone else out there on these drugs? Did the side effects diminish over time?
  • Hello @Courtenay @AndreaB and @Nanakaw - hope you are doing well. I have been reviewing some of the topics on the site and wondering if you can share your experiences again - as to where you are now with the Lynparza / Olaparib treatment. Thank you in advance for sharing. 
  • Hi flower!
    Thanks for asking!  The drug lynparza is working for now anyway.  I am so happy and surprised!  I feel great on the drug with only just a few side effects.   I had 5 spots under 2  cm which have shrunk by a few mm.  How is everyone else doing?
  • Hi Flowergirl
    I’ve been on Lynparza for a month. The first two weeks had no side effects but last two weeks I have the worst foul gas, some bloating and a bit of diahreah and nausea. Also I’m more tired than I was before. I’m seeing my Oncologist this week so may get some more insight. 

  • Hi Nana
    I'm glad you mentioned bloating because I ve had that side effect all through chemo and the four mo I've been on lynparza.  The positive news is the drug is slowly reducing size of tumors!  Maybe that's what's going on for you.  
  • Does anyone know what causes the bloating.  Obviously it's the lynparza.   But can anything be done?  
  • Hi @Nanakaw and @Courtenay - it is good news it is working to shrink the tumors - sure hope those side effects get better to deal with!
  • Hi @Marilyn - I'm new to the group and only found OVdialogue while researching the drug Lynparza.  I did however miss your post from Nov 17, especially the information regarding the funding.  I just received the drug today and will delay the start until after my SCAN tomorrow morning as I don't want to take a chance with any side effects. 

    The biggest problem with staring Lynparza for me, was getting funding.  While both my spouse and I have medical coverage thru our employers, my plan provides 80% coverage on all Rx and my spouse's 100% coverage. Difference is, my plan has auto eligibility for Lynparza, but my spouse's plan needs prior approval.  With email, fax, phone, you would think a week, (ok may two) for approval for a life changing cancer drug would be a reasonable expectation, not so with this company.  The org application was completed and fax to the drug company 11 Jan 18, by the Drug Access Navigator at the cancer centre.  The denial letter dated, 17 Jan 18, was received via CanPost by my spouse on 24 Jan 18. Nobody mentioned that the reply would be forward only to the plan member and not back to your doctor or the Drug Access Navigator at the cancer centre. So that caused delays.  An appeal letter forwarded to the drug company by the cancer centre and again they send a reply letter to the plan member (via CanPost).  The letter was asking for written confirmation (on official letterhead)  that my drug plan is in fact providing 80% coverage, even though this info was contained in the org application signed by my oncologist on 10 Jan 18. Another letter dated 7 Feb 18, said a fax was send to my physician because he didn't provide all the information they needed regarding my reoccurrence date and dates of my last platinum chemo treatment.  Last letter received was dated 12 Feb 18 stating the appeal was denied.

    In the end the Drug Access Navigator at the cancer centre did put me in contact with AstraZeneca's Patient Assistance Program.  They came thru in a matter of days with the additional funding I needed.  The last little hiccup was the funding info was not sent to the correct pharmacy.

    Again, thanks @Marilyn for posting the funding info regarding Lynparza.  The above post was me letting out much of my frustration caused by hospital protocols and the unnamed drug company SOP's.  While I first believed it was all the drug companies actions causing me my pain, (although they could use a good update to there SOP's) I found out in the end that the Drug Access Navigator's Office played a large part in causing me undo stress because they provided incorrect info to the drug company which was only corrected when I made them aware of it.  I now believe that my org application would of had a greater chance of approval if it contained the correct medical info at the start of the process.  While I still plan to deal with my spouse's drug company regarding there long/bungling process just to tell you no.  It will have to wait until my health improves.  Lynparza is my last chance drug until something new is discovered.


  • Hi Janney
    How sad you had to deal with all this.  It's not right.   You'd think the people in the health care industry running these operations would be more competent as we're talking about people's lives!
    It sounds like a deliberate attempt to stall your application...what is the name of your insurance co?   For sure a company to avoid.

    I'm glad Astra zen came thru!  And I wish you success! 
  • @Courtenay
    Hi Courtenay -  thanks for taking the time to read my very long post.  Last week before funding was granted I was willing to stand naked in front of the insurance company to get the attention my case needed. Since then I have calmed down and don't want to out the company before I gather all the info and be sure of the part they played in the delay of funding.  Will keep you up to date.

  • At my last appt with my oncologist I was told to take Lynparza without food, either eat one hour before taking the drug or wait two hours after eating.  But was told by my pharmacist I could take it with or without food.  When I researched the topic all indications (even by the drug manufacturer) were the same as the pharmacist, with/without food.  The only exceptions were from all cancer related sites, which said the same as my oncologist.

    Question:

    Has any other Lynparza users been given the same conflicting directions as I was given by my pharmacist/oncologist. If you have, what did you decide for yourself?
  • Hi Janney 
    That's a good question!   I was wondering that myself.   Could the prescription be different for those taking the pill vs capsules?   AZ should have the right info.  Let me know what you find out.   I'd be interested to know. 
  • Thank you @janney (sorry for your terrible run around for the coverage) and @Courtenay for sharing your experience.
    I wonder also, if it makes a difference with tablets vs capsules. Everything seems to state with/without food so perhaps what ever works for the individual. Hope you get some answers.
  • If anyone not currently taking this drug - you can check out more about it here:
    https://www.lynparza.com/ 
    Be sure to scroll down on the site as you can review some of the studies that were previously done.
    And as always, check in with your medical team if you have questions or concerns.
  • MarilynMarilyn ✭✭
    Hi @janney ; I, too, am sorry you had such a runaround getting funding for Lynparza.  Sadly, it is sometimes up to the patient to become their own advocate for getting appropriate and timely information for treatment. I'm glad that is finally sorted out.  I will ask about the issue of the optimal time to take the drug either with or without food.  Watch for an answer here.  
  • MarilynMarilyn ✭✭
    Hi @janney @Flowergirl @Courtenay and @Nanakaw

    Here is a response from the manufacturer regarding the optimal time to take Lynparza:

    "As per the olaparib (LYNPARZA) Product Monograph, olaparib should be taken on an empty stomach (at least 1 hour after a meal) and patients should refrain from eating for up to 2 hours, due to absorption rate of olaparib in high fat meals. (This is different than what many consider eating on an empty stomach as that leads one to assume they can eat after dosing.)  As far as tablets versus capsules goes, we are only approved in capsule formulation in Canada at this time."

    I hope this helps!

  • Hi @janney
    My Oncologist and Pharmacist gave me the info in bold in the post above. That’s how I have been taking the drug. It has been 2 months now and the nasty side effects are finally gone! Yayyy!!!  I’m feeling much better and have more energy too. So Hang in there ladies!! It gets better!! I must wait another month for a CT scan to see if it’s working. Fingers crossed! 
    Sorry to hear about your runaround with the drug approvals. I never imagined the administration involved for all of us that goes along with this disease!! So many forms, letters and details to be on top of. But glad you got the funding! 

  • Hi everyone!
    I spoke to my oncologist last week and was told the tablet form of lynparza will soon be available in Canada.  It doesn't matter if you take the pills (4 in total) with or without food.  
  • It is wonderful to hear that the Lynparza is helping ladies out there.  I am now on my second recurrence and receiving Taxol only.  I was receiving Carboplatin until rd 14 but it had to be stopped at that point. I am BRCA gene mutation positive. I know I can receive Lynparza as the chemo is working again this time.  I always develop ascites.  I was wondering how long after the last standard chemo treatment before one receives the Lynparza?  I am sure it varies.  I have only been on Carbo and Taxol.  I have not tried anything else.  I am not sure whether or not that is a factor.  Thanks.
  • Hi Curley, I think you can start lynparza around 3 wks. after chemo, or whenever your doctor sees fit!  Hope it works for you!  It used to be 3 regimens of platinum drugs before you can take a parp inhibitor, but maybe that's changed, I hope so!
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