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Lynparza/Olaparib Anyone?

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geekness
geekness Member Posts: 2

I'm looking to share side effects or just any updates on Lynparza / Olaparib. I just started targeted therapy on Jan 12th. Aside from a little heartburn at first (helped with OTC pill), I've now started some daily Immodium, which the pharmacy sent WITH the Lynparza. Lol. I've started to just feel plain odd and very emotional. I can usually keep it together. I'm wondering if anyone else is yet on this medication. I'm Brca1 Stage 4 (Triple Negative) with mets to lungs and sacrum/soft tissue. I was doing gemzar/Carbo until December, which was keeping three small modules in lungs stable, but not helping anything in sacrum. So we switched it up and both insurance and pharm are helping me with copays on the meds, which I know I am very lucky to have had happen. It seems I can't find a big group yet that's taking this drug to compare how they might be feeling and I'd love to try and connect with a few people. I think even that might help me get right in my brain for a bit.

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  • denny123
    denny123 Member Posts: 1,472
    edited February 2018
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    Hi,

    I started a thread calling it Olaparib, but no answers.  I am waiting for my chemo center to get grants to pay the co-pays, and if so, I will start it within 2 weeks.  Will see my onc Feb 9.

    I will certainly keep you updated.  I am a 16 year survivor of Stage 4 BC with original metasis to my liver (Gemzar with Herceptin cleared my liver), and have been on chemo for the whole 16 years.

    I am Her2Neu +++, but the tumors in my chest nodes are somatic BRCA2 positive.

    I was on Kadcyla for 4 years until it quit working and it made me so constipated, that I might not need Immodium.

    I recently was on a clinical trial of Poziotinib and only lasted for 8 days since it was a nightmare.  I was given Immodium with it, but didn't need it.

    Great to find someone to "talk" to!!!

    As far as emotional, I have been a wreck just thinking my time was up since we are running out of chemos.

    Denise

  • denny123
    denny123 Member Posts: 1,472
    edited February 2018
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    I just got approved for the Lynparza (Olaparib) and my co-pay will only be $3.70 a month!!!

    The pharmacist talked to me about it and how to take it.  UPS will deliver it on Wed, and I left a message at my chemo center asked if I can start the pills immediately or do I have to wait until I see my onc on Friday first.

  • Kkrenz
    Kkrenz Member Posts: 76
    edited February 2018
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    Awesome news Denny - I really hope this works for you!!!


  • denny123
    denny123 Member Posts: 1,472
    edited February 2018
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    My friend who has ovarian cancer, told me about Inspire.com.  A lot of ovarian cancer survivors are on Lynparza, and their SE's are all different.

    But none seem to be as bad as what I had on Poziotinib.

    Chemo nurse returned my call and I have to wait until Friday to start on it, since my RBC levels are low.

    Denise

  • geekness
    geekness Member Posts: 2
    edited February 2018
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    That's great to hear about the copay! This is not cheap medication for sure. As of tomorrow, I will have been on it for 3 weeks now. I'm triple negative stage 4 metastatic breast and trying to get shrinkage/eradication of sacral bone mets and soft tissue tumor that did not respond to Gemzar/Carbo treatment. If you don't mind, I'd love to message with you over the SEs and how we do on it?

    I did hear from another lady that ovarian cancer years ago that tried it and it was just nice to hear I wasn't the only one feeling the way I was. I feel oogy starting end of last week, but there's no way I'm willing to give up on the medication quite yet if it will give me more time.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2018
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    If you ask the moderators (via private message) to add the word “olaparib” to the topic line of this thread, maybe you will get more responses. Some people may not recognize “Lynparza “.

  • denny123
    denny123 Member Posts: 1,472
    edited February 2018
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    Saw my onc today, and after waiting for 3 weeks to get approved for the ovarian cancer drug Lynparza (for my BC), he thinks it would be too hard on me.

    He suggested Xeloda, and eventually Herceptin again.  Since I have been on Herceptin on and off for 11 years, I asked if I can both together and he approved.

    Now I have to wait to get approval for Xeloda.  But the combo will be lot easier than the Lynparza, which can have some nasty side effects.

  • denny123
    denny123 Member Posts: 1,472
    edited March 2018
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    Update.  8 days of Poziotinib put me almost in remission!  I just had a lung scan that showed a tiny bit of cancer left in my upper left lung node.

    It was previous 2cm x 3cm with an additional node in the hilar area.  The hilar node is now normal.

    So the Poziotinib worked, but should be a much lower dose.

  • Bahorwitz
    Bahorwitz Member Posts: 1
    edited March 2018
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    I am BRCA2, with bone and liver mets, and have been on Lynparza since early October.  Outside of occasional reflux and bloating, I have had few side effects.  Feeling a bit odd and emotional is my normal state of affairs (LOL), so nothing seems out of the ordinary.  I have been taking Venlafaxine for years, so perhaps that has helped.  In January I had my quarterly bone and CT scan, and it appeared that nothing has changed in my bones and the lesions in my liver were reduced in size somewhat.  However, I recently had my first PT/CT Scan, with oral and intravenous contrast, and the liver lesions were reported to be a little larger than what was reported in Jan.  Not sure what this all means, and am waiting to hear from my Doc.  I am thrilled that there is a targeted therapy for BRCA folks, and hopefully it will work.  (Note:  I had been on IBRANCE, but my body..white cells.. could not tolerate it, despite the apparent success; and started with Xeloda which made me very very sick.  Hang in there... looking forward to see how you do with Olaparib.

  • denny123
    denny123 Member Posts: 1,472
    edited March 2018
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    Bahorwitz-- My onc decided not to put me on Lynparza since the Poziotinib really did a number on me.

    Instead, I am on Xeloda and Herceptin.  I still have the bottle of Lynparza here and might go on it in the future.

    Thanks for the reply!


  • Lena_Margaret
    Lena_Margaret Member Posts: 7
    edited May 2018
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    Hello! I just started this treatment. I am sure hoping this gets things back under control. After one week, my counts are great. My only side effects so far are a bit of nausea and continuing relentless constipation.

    This regimen sure seems rare for us mbc'ers.

  • Pagej
    Pagej Member Posts: 42
    edited May 2018
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    I am supposed to start this drug soon for my mbc... I wonder how tired I will be and constipation sounds terrible. Hopefully can find a decent colonics place nearby.


    I hate being tired 😓 but I just really hope it works to get things under control

  • denny123
    denny123 Member Posts: 1,472
    edited May 2018
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    Good news, since I still have a bottle of Lynparza in my cabinet.  Might need it someday.

    Kadcyla made me very constipated for 4 years and I am still constipated after stopping Kadcyla in November.  I take a dose of Miralax a night and 250-500 mg of WalMart stool softeners each night.

    When that doesn't work, I take a small dose of Phillips MOM.

  • srlilly
    srlilly Member Posts: 1
    edited July 2018
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    Hello! I've been on Lynparza/olaparib for almost 3 weeks. I'm BRCA2 (originally diagnosed Stage 3 ER+/PR+/HER2- in 2011; diagnosed with liver mets in Oct 2015). After almost 2 years of chemo (gemcitabine/carboplatin) successfully holding my mets at bay, my cancer decided to park in a new location: my abdomen. So, I'm trying this new drug. No terrible side effects so far, although I do get very tired in the afternoons. I'll see my oncologist tomorrow to get his thoughts. I will say it's quite nice to take a break from the chemo lounge. I'll report back as I learn more!

    Update (July 16): I'm writing to report that after 2 shorts months, my oncologist has taken me off this drug. My latest scan showed disease progression. I'm BRCA2 with hormone positive disease and apparently Lynparza doesn't work very effectively in this population. Best of luck to those who are experiencing success with this treatment. I found it easy to tolerate.

  • Nan812
    Nan812 Member Posts: 224
    edited July 2018
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    hi everyone!!.. I have been taking the parp inhibitor called lymparza for almost a year and a half with those first five months getting IV chemo called havalen too. This was right after a craineotomy when one of my brain tumors went wild and they had to rush to take it out, in fact all my cancer woke up so this was the TX decision, after surgery and more gamma knife to the tumor bed.

    my hemoglobin started to really drop to the point that I was getting 1-2 bags of blood every week for about 7-8 weeks (right thru my DD wedding ): so they took me off everything for a month....turns out it was the procrit.....yup the drug they push in your IV to help you build blood....just did the opposite on me and it was so awful to have a bone marrow biopsy done while the doc ( not my doc ) is complaining that he can't find marrow... well DUH!!!!..no blood/no marrow...I screamed at him that they had state of the art technologies and they could use what he got and please don't drill my bone again!!

    There's a lot more to that whole story but I'll spare you....for now lol

    So after 16 months on the lynparza my lashes,brows, and moustache lol have all grown in like normal. My hair is the right thickness but it's growing sooo slow..I should have at least 3inches but there is only one inch. Now in the past couple weeks I have been nodding off at the strangest times during the day. It's bad, I'm scared to drive cuz if I'm stuck in traffic or even at a light I'm scared that I will just nod off...like the ride home after a chemo infusion (out go the lights) so I'm not sure if it's a SE , after all this time it's cumulative, or if I just have some strange sleeping issues.Oh freaking cancer arrrhhh!!!! Well, knock on wood, it seems like the lynparza is working (considering my prognosis of 3-7 months in march of 2015) so I'll just deal with whatever comes along cuz it's still better than the alternative. Love you guys, keep shining bright!!

    .



  • franbog
    franbog Member Posts: 1
    edited August 2018
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    I have been on Olaparib for 25 months now, for a BRCA 1 related metastatic breast cancer which stopped responding to anti-estrogen therapies, and it has worked beautifully.

    But I am curious as to whether other people using it have found the side effects to get progressively worse over time, or if they have remained somewhat stable. I seem to be more fatigued and generally feeling more unwell as time goes on (nausea, malaise, moody), although my labs and scans are good.

    I have been using OTC meds to help with nausea (as recommended by my onc), and sometimes ritalin on days when I need to be "on", but find that they are not enough anymore. Although the Olaparib is surely better than chemo and radiation (have done those twice) for side effects, I would love to find a way to feel better than I do now.

    The oncologist thinks it might be the Olaparib, the neurologist thinks its might be the anti-migraine meds, and so I am trying to sort this all out. Would be grateful to hear other people's experiences. Thanks for your input.

  • NouzayO
    NouzayO Member Posts: 66
    edited August 2018
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    Hi ladies,

    This is indeed a very short thread compared to others out there .. lol

    I am wondering if anyone is using Lynparza for BRCA mutated tumor not BRCA gene. When I first got diagnosed I did the genetic testing and I was BRCA negative but in two years as other treatments failed I asked to get my biopsies tested for possible treatments and clinical trials using the oundation One test .. the biopsies were all unviable unfortunately and they opted for testing the blood instead .. the only thing that came out of this that has potential is finding that my tumor has mutated to be BRCA positive yet my initial gene test is the same .. hence my MO recommended this drug as a possibility but said that’s not the ideal circumstances to use Lynparza.

    Any thoughts ???

  • denny123
    denny123 Member Posts: 1,472
    edited August 2018
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    NouzayO,

    If you read my posts above, my chest tumors tested positive for the BRCA Somatic gene, so that is why I qualified for Lynparza.

    But since the Poziotinib clinical trial put me into remission, I am on Xeloda and Herceptin instead.

  • NouzayO
    NouzayO Member Posts: 66
    edited August 2018
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    thanks Denny for your reply! I’m thrilled for you being in remission!! Can you tell me more about that clinical trial p

  • denny123
    denny123 Member Posts: 1,472
    edited August 2018
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    Thanks!   You can keep googling Poziotinib to see when it advances to the phase 3....unless it is available in your area.  The last time I checked- it was only in 4 states.

    I am in PA and the Hillman Cancer Center in Pittsburgh was the origination of the trial in my area.

    I would definitely go with one pill instead of 2 daily.


  • Pagej
    Pagej Member Posts: 42
    edited August 2018
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    nan, girlfriend. I had recent progression to me genial, worst case right?!

    Now I am on Keytruda every 3 weeks and lynparza daily. Last scan showed reduction... it’s been a wild ride. Seeing feathers everywhere now. Asymptomatic currently avoiding WBR it Toxc IT chemo, drs choose not mine let’s see how these drugs wrong kinda thing.

    Nan and hope your recovering nicely from craniotomy and rads it took a bit but I felt better than ever eventually ❤️❤️❤️


    Anyone on Keytruda ad lynparza for brain mets? Tnbc and brca1? I hear decent results

  • Rachelsedai2
    Rachelsedai2 Member Posts: 2
    edited September 2018
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    I starrrd taking Lynparza in February combined with abraxene for triple negative BRCA1 mets that has spread to liver, lungs, and sternum. Had a remarkable scan in April with no evidence of metabolic activity in the liver and lungs and a definitive decline in the sternum. I was feeling the effects pretty hard with way decreased hemoglobin so dr took me down 1 Pill. July's scan showed activity in the liver again and my September scan shows increase in Liver mets and some new areas in my pelvis. It was great while it lasted but it looks like it's time to switch it upagain. Dr started me on carboplatin today

  • theresa45
    theresa45 Member Posts: 238
    edited October 2018
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    Hi Ladies,

    I have been on talazoparib (another PARP inhibitor) for 12 months as part of the TBB Trial at Stanford. My mets have been stable in size with a reduction in metabolic activity. For me the side effects have been very tolerable, some initial nausea that is gone and lowish blood counts. I qualified for the trial because I have a CHEK2 genetic mutation. I do NOT have a BRACA1/2 mutation. Another patient has both a CHEK2 genetic mutation and a somatic (just in the tumor) BRACA mutation. Her oncologist and mine said that a BRACA somatic mutation is even better than a CHEK2 genetic mutation as far as indicating that Olaparib could work. I'm encouraged to see the patients who have been on Olaparib for about 2 years!! I hope that this thread will fill up with patients benefitting from PARP inhibitors! Theresa

  • mediclisa
    mediclisa Member Posts: 100
    edited November 2018
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    Hi Theresa45, I have been on Olaparib since March. My combo was Olaparib/Avastin. A couple of months ago my TM started to creep upwards yet my scans showed stable Mets and no new Mets. My oncologist decided to stop the Avastin and continue Olaparib with Gemcitabine. I’m two weeks on with 1 weeks off. The usual side effects starting.I am also hoping for a good couple of years. Good Luck....Lisa

  • Kezza1
    Kezza1 Member Posts: 1
    edited November 2018
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    Hi ladies, I have just been diagnosed with tnbc lymph node recurrence 2 years after original diagnosis. I'm brca1. Went to see my oncologist the other day and he wants me to start olaparib. I was on the Olympia trial for the past year and have just found out it was the placebo I was getting and not the olaparib. Just wandering how your all getting on on it?


  • moderators
    moderators Posts: 8,069
    edited November 2018
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    Dear Kezza1,

    Welcome to the BCO community. We are sorry about your recurrence but so glad that you reached out to our community and its members. We are hoping that others will respond soon. Let us know if you do not get any answers to your posted question and we will help you to find some ways to best connect here on the boards. We want to see you around here and support you through this new leg of your journey.

    The Mods

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited November 2018
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    Hi all,

    I’m starting Lynparza next week in addition to my normal Avastin & Opdivo. Reading back it seems like it’s pretty tolerable and has had decent success. MO decided to add it due to me doing well on Talazoparib last year as part of a clinical trial.I also see quite a few of us TN ladies here. How is everyone still doing? I’ll be doing 300mg twice a day. Is that a normal dosage? Any suggestions for just starting it out?

    Hope everyone is doing well. Happy Thanksgiving

  • NouzayO
    NouzayO Member Posts: 66
    edited January 2019
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    hello ladies!

    Hope you all had a wonderful Christmas and a happy New Years!

    I will also be joining you starting Friday.. just left the Verzenio folks unfortunately.. it was a fairly tolerable drug .. I don't have a ton of treatment options I think and really wished Verzenio would last longer and be effective for some double digits months but it is what it is.

    I had my scans right before Christmas and it came back showing again « more bone activity » but also a few new liver mets!! I'm so bummed right now because that means that all the Y90 suffering was for nothing and may have to go through all this again if my next treatment didn't work.

    I'm trying Lynparza next even though I only have a somatic mutation not a genetic one. I was also offered Afinitor but the comments on that thread have been very discouraging. I also have Halaven as an option but aside from trying to avoid IV chemos at the moment I'm trying to save it when liver mets are a lot worse because then I'll need something that can act fast.

    Hopefully I made the right choice and can live with the new side effects.

    Any words of advice on how to maneuver this drug will be great!!!

  • JiimmyT
    JiimmyT Member Posts: 2
    edited February 2019
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    I am a male breast cancer survivor with mets in liver and bones.

    I am trying to get into aclinical study combining olaparib and an immuno therapy drug I have recently stopped chemo after three rounds ( carbo/gem) after developing a deep cein thrombosis and lung emboli. On a blood thinner and wondered how the platelets faired with Lymparza.UPDATE started the trial yesterday and other than some disrupted sleep I feel great. Is there a cumulative effect felt after a few weeks on Lynparza

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited June 2019
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    Anyone on here? I just failed faslodex and Ibrance. Now my MO is switching me to olaparib since I am BRCA2+. I would love to hear words of encouragement. :)