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Lynparza/Olaparib Anyone?

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135

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  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited November 2020
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    Vidiot , great news that olaparib is working.

    Maaaki, not sure about bone mets.

    I am still around. 😊

  • Ashlyn
    Ashlyn Member Posts: 93
    edited December 2020
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    Starting Lynparza (with Keytruda) this week as part of a trial.

    Nice to see several doing well on this drug.

    Have people experienced many side effects from the Lynparza? Nausea?

    How frequently do you get labs done? And is it just the hemoglobin that drops? What of the neutrophils?

    Ash

  • candy-678
    candy-678 Member Posts: 4,126
    edited August 2021
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    Bump Thread---

    I am going to be starting Lynparza as my 2nd line therapy.

    I will go back and read this Thread.

    Anyone out there on this currently???

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2021
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    Hi, candy. Just thought I would stop in and say Hi. My scans still show NEAD, but my onc and I have begun the what's next discussion because my tumor markers may be creeping up. At this point she is talking about a PARP inhibitor for me next because of somatic (tumor) mutations in the BRCA and related pathway. She indicated that is would be easier than Piqray, another option. Of course when the time comes we will do another Foundation One or Guardant 360, and I will have lots of questions.

  • candy-678
    candy-678 Member Posts: 4,126
    edited September 2021
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    Well I talked to my Palliative Care team yesterday (Zoom appointment). The doc prescribed Zofran in case I need it with starting Lynparza. I am to get the shipment of Lynparza tomorrow (Friday) and start it Saturday morning. I did a CBC today (Thursday) for a baseline reading. WBC 2.5 and ANC 1370 (1.3), being off Ibrance for 16 days now. Do they look at WBC's or ANC with Lynparza? I will have to read up on it. Will have to watch RBC's and platelets too with Lynparza I guess. RBC's 3.55 today and platelets today 270. On to the new med.

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited September 2021
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    HI- I have been taking Lynparza since 7/18/2021. I got it approved for 1 year to reduce my risk of recurrence based on the OlympiA study. I am not stage 4, I hope that no one minds that I post here, I just wanted to share my experience with the drug in case it can help.

    Candy drink LOTS of water. It's crucial! The first month was pretty rough, low grade nausea, major fatigue and I had constipation--many others have the opposite side effect. I didn't take zofran except 1x because that just compounds the constipation for me. Eat small meals often, drink lots of water (so important I had to share it twice). Many people take the med w/a spoonful of peanut butter. I use a spoonful sun nut butter.

    My bloodwork didn't take a hit (knock on wood) There is a very active group on FB for ParP Inhibitors (many of the members are OvCa)

    Some people have no side effects, some have had dose reductions. If you have any questions message me anytime.

    The Pharmacy Nurses are great.

    I have a pathogenic gBRCA 2 mutation

  • candy-678
    candy-678 Member Posts: 4,126
    edited September 2021
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    Lynparza update--- Here we go. Took first dose just now. Was thinking.... with Ibrance we had a "welcome kit", lots of literature, the never ending commercials. With Lynparza--- Astra Zeneca-- no commercials, no welcome kit, just the bottle of meds. Not even fancy packaging. Just a bottle of 120 pills. Hum....

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited September 2021
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    Lol, candy. The xeloda folks sent me free lotion and the neratinib folks give me free immodium. Hey, Astra- Zeneca, where’s the swag? You are a brave hobbit. (Sometimes this is the image I use to encourage myself,).

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited September 2021
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    I got a packet and lyparza fuzzy socks. I get mine thru Biologics by McKesson. If I get more socks I"m happy to send them to you! LOL I hope you are having a good low side effects day Candy678!

  • candy-678
    candy-678 Member Posts: 4,126
    edited September 2021
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    2019whatayear---Hey I want fuzzy socks !!!! I used CVS Specialty Pharmacy--- my insurance. Well I took the first dose this morning with breakfast. Some nausea today, but I had nausea before the Lynparza too (have had nausea coming and going for quite a while-- during Ibrance use) so.... I did notice more saliva today. You know how when you are going to puke you mouth gets full of saliva. I have had increased saliva all day. Then waves of nausea. Like if I smelled something bad it wouldn't take much to hurl. Hum... I take 2nd dose in about an hour. I will take with crackers or something. See how dose #2 goes. I wonder about how it will go as time goes on. You said the first month is rough.

  • candy-678
    candy-678 Member Posts: 4,126
    edited September 2021
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    Well I feel like crud with this Lynparza. Today is day 5 on the new med. Nausea and no energy. I joined a closed FB page of others on the drug, mainly ovarian cancer patients. Most have posted that this is how you feel with it. And that the first month is the worst. One posted they had nausea for 2 months !!!! This is not QOL, in my opinion. I know I have to give my body a chance to adjust. And slowing the cancer is #1. But... I do not feel like doing anything. I know some of the "not do anything" feeling can also be grief with my sister's passing. The grief process. The stress of the last few weeks. But, I feel awful. Waves of nausea, no appetite, want to sleep all the time. I cannot get things done I need to do.

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited September 2021
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    I hope today is a better day. The first couple weeks for Lynparza were the worst for me. My energy started to rebound and the nausea lessened. Today I'm down to the last week of my second bottle. I think my energy is about 90% of what it was previous to Lynparza and now finally I am able to go back to intermittent fasting of not eating 16 hours a day w/o nausea from Lynparza. I can take the morning pill w/a glass of water and not eat for 2.5 hours. Woo hoo! I take the 2nd set of pills 1.5 hours after dinner. no nausea WOO HOO. I hope the side effects chill out and that the drug does it's work.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited September 2021
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    Candy, that sounds very hard, dealing with the nausea and fatigue, and while you are mourning your sister's death. I want to offer you two reasons for hope. First, as others have said, your body may adjust, and you can use the anti-nausea meds to get you through this starting time. One night shortly after I started my current triple combo (not Lynparza), I had to send someone to get sublingual (dissolvable) zofran and a scopolamine patch from a 24-hour pharmacy because I couldn't even keep a zofran pill down. That worked and then I continued using zofran and the patches, gradually weaned off of them, and continued my combo with no more nausea. The body is amazing in how it can adjust. Second, reading the information about Lynparza on the pharmaceutical company's web site, I see that there are two standard dose reductions that can be used. Sometimes a dose reduction of a drug is the key to letting a person stay on it and not suffer bad side effects, and still get the benefit of a cancer treatment that works. That has been the case for me, as I have done well for a long time on 2/3 the usual dose of neratinib.

    Please keep in close communication with your oncologist, pharmacist, and palliative care doctor, and work together. The focus right now must be on helping you get through this time of starting this new treatment to a place where you can live a life you can enjoy.

    https://www.lynparzahcp.com/metastatic-breast-cancer/olaparib-dosing.html

    Edited to add: Link above to the dose reduction information. It says that 3 in 4 patients remained on 600 mg daily. So that means 1 in 4 had a dose reduction. The page also shows a chart of the median length of nausea from four different trials, and it was 1.13 to 2.2 months. Keep in mind that a median is the middle, so some people had shorter or longer times.

  • candy-678
    candy-678 Member Posts: 4,126
    edited September 2021
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    Thank you ladies. I have not called my Palliative Care Team yet. I do have the Zofran pills in the cabinet to use. I don't know if they will cause constipation with me, maybe not. Or maybe not horrible constipation but more of the usual constipation I do have. I need to try them. I hate to call Palliative Care when other anti-nausea meds could cause constipation too--- slowing GI and drying up secretions, a recipe for constipation with any anti-nausea med.

    I have an appointment with my MO on Sept 20 for blood work and office visit. That will be 16 days after starting Lynparza. (I had the appointment set up before starting the drug) So I will discuss how I am feeling by then, and will see what hit my labs have taken from the med. If we need to consider a dose reduction--- for side effects or for blood counts-- then we can do that then. That way I would have given the med over 2 weeks chance, even though 2 months sounds like a more reasonable time frame based on the data. I don't want to reduce the dose or make a change too soon. Makes me sound like a wimp.

    We shall see....

  • candy-678
    candy-678 Member Posts: 4,126
    edited September 2021
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    2 1/2 weeks on Lynparza now. Still trouble with nausea and fatigue. Went to MO office visit and had labs done today. WBC and ANC low, but actually better than with Ibrance. WBC 2.7--- I usually ran between 1.0-2.0 with Ibrance. ANC 1.9 (1900)--- ran 0.8 (800) with Ibrance. Hgb 10,2--- was 10.6 before. No change in platelets. Kidney and liver numbers look good. Discussed the nausea with MO. Can use Zofran more--- I hesitate due to my chronic constipation already. She mentioned can lower dose. I said no, not yet. See if I adjust to it. To do more labs and see MO again in 1 month. The full story will be if the scans look better---- no scan appointment scheduled yet.

  • candy-678
    candy-678 Member Posts: 4,126
    edited October 2021
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    Just checking in. This Thread not very active. Any one else on Lynparza out there???

    I am on week 7. Still same nausea. Zofran no help. Messaged Palliative Care doc. She suggested Zyprexa??!! An antipsychotic that helps with nausea sometimes. I said NO. Otherwise she said the usual suspects--- Compazine, Reglan, etc. All can cause drowsiness and constipation. I am eating small snacks and using Ensure. I see my MO Oct 25 and will discuss the option of lowering dose.

    Anyone know the PFS of Lynparza based on dose reductions???

    On Ibrance it is shown to be effective at lower doses.

    Probably scan in Dec--- 3 months after starting Lynparza.

  • star2017
    star2017 Member Posts: 370
    edited December 2021
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    candy, how are things going? I'm about to start Lynpraza next week. I hope things have improved for you in the last few months.

  • candy-678
    candy-678 Member Posts: 4,126
    edited December 2021
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    Hey Star. I read on another Thread that you were going to Lynparza. I was hoping you would show up here. Seems not many of us on this med???? I read on the Ibrance Thread that PatgMc recently went to another newer PARP, I forget the name, a sister to Lynparza. But she has not posted here, and that med doesn't have a Thread that I know of.

    I started with the 600mg per day--- 300mg in the am, 300mg in the pm. Nausea was awful !!!! I gave it 2 months to see if my body would adjust. I then told my MO we had to lower the dose, but I just wanted down a stairstep. We went to 500mg per day---- 250mg in the am, 250mg in the pm. Much better. Nausea totally left for 6 weeks or so, then came back but milder and periods of nausea instead of all the time. It is doable now. Some days, some hours I am nauseous, and food does not sound appetizing. But other days I do well.

    I scanned in December and it showed mild shrinkage of the liver mets--- shrinkage of a couple of millimeters each tumor. My MO wanted more decrease, but said that it was shrinkage so we are continuing on the Lynparza with another scan in 3 months or so.

    I read that the median PFS of Lynparza is just 7 months or so. Wow, not much time. But I got 4 years out of Ibrance when that median PFS is 2 years, so who knows.

    Please keep updating here to let us (me) know how Lynparza works with you.

  • star2017
    star2017 Member Posts: 370
    edited December 2021
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    Thank you for the insights, candy. I'm glad to hear that things have improved for you. I haven't gotten the start date yet for the Lynparza, but I did take my last Verzenio last night. It sounds like I should anticipate the first few weeks being rough, and will use this week to reduce some of my workload looking ahead.

    I hope that the treatment becomes easier and is effective for you.

  • pnw
    pnw Member Posts: 36
    edited January 2022
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    I've been on olaparib/Lynparza since Nov.1, 2021 as a part of a phase 3 study. Previously took Ibrance + letrizole for over a year.

    Not to put off anyone, but I hate this stuff. I have a Dr. appt. tomorrow and may beg the doc to be released from this treatment, I might drop out of the study which was set to last 24 weeks.

    The worst part of the Lynparza side effects for me have been some kind of psycho brain backlash. Crazy dreams, angry at everything, waves of feeling out of my mind, almost hallucinogenic. None of those are listed as possible side effects that I have found. Also crushing fatigue and weakness that is wearing me out.

    It's almost like a bad LSD trip. This stuff is making me completely disgruntled and unhappy; I want it to stop.

    Will update after labs and Dr. appointment tomorrow.


  • star2017
    star2017 Member Posts: 370
    edited January 2022
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    I wanted to update as I haven't started the Lynparza yet. Regarding that small spot at the top of the femur that was lighting up on the PET -- I was "hoping" it was a fracture but the MRI seems to confirm it is a metastastic lesion. I'm going to be starting radiation and Lynparza now that we've confirmed it. Just need to see if Lynparza can be taken in conjunction with the radiation.

  • candy-678
    candy-678 Member Posts: 4,126
    edited January 2022
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    Star- I do not know about radiation with Lynparza. Sorry cannot help you.

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited January 2022
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    Hi all!

    I was taken off of Lynparza for radiation. For those on Lynparza, have you talked about getting on pembro (keytruda)? There are studies to find out if that will help with the longevity of Lynparza. I was on it olaparib as a mono therapy for 20 months before progression. So you can get lots of time on it. My SE were minimal - just some nausea in the first month, but after that I was good. I was on 300 in the morning and 300 in the evening. Do try to take it with food. Helps with the nausea.

  • candy-678
    candy-678 Member Posts: 4,126
    edited January 2022
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    Hi Hollyli1202. I do not think I can be on Keytruda, or any other immunotherapy. I have autoimmune disorders. I asked my MO about immunotherapy before and she commented that it would be risky for me. We have not delved into much of a conversation about it yet. As I progress, I will revisit the subject with her. Immunotherapy is becoming a big thing with MBC, but I would have to look into it due to my autoimmune conditions.

  • star2017
    star2017 Member Posts: 370
    edited January 2022
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    I'm Her2-, so I don't think immunotherapy is an option for me (I could be wrong, still learning).


    I've been on the full dose of Lynparza for 2.5 weeks now and started radiation a week in. They're letting me do it concurrently, and so far so good. I get the occasional wave of nausea, and there's of course fatigue, but I'm able to manage so far.

    I'm still on my monthly Fulvestrant shots as well.

    Hope you all are doing well.


  • sondraf
    sondraf Member Posts: 1,613
    edited February 2022
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    Alright, joining the gang here in 3 weeks, they want to radiate one vertebrae and breast and nodes. So I guess the timing worked out OK in that respect. Lynparza as a monotherapy, but have to finish out letrozole until I switch drugs.

    I'll make sure to get that zofran script before starting! Star, how are you doing?

  • candy-678
    candy-678 Member Posts: 4,126
    edited February 2022
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    Welcome Sondra. I have done Lynparza for 5 months now. Reduced dose down from 600mg a day to 500mg a day after 2 months in. Nausea way better now, but still mild nausea at times. Fatigue is the biggest side effect for me now. Scan 1 after 3 months showed small shrinkage (by a mm or 2). Scan 2 is March 7.

    Good luck and keep posting here.

  • star2017
    star2017 Member Posts: 370
    edited February 2022
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    I'm doing well. It's been 3.5 weeks on the 600mg. So far, the nausea is only occasional, coming in brief waves. There's fatigue, but I'm a parent of young kids and also undergoing radiation (last day today), so I'm not sure what the source of the fatigue is.


  • sondraf
    sondraf Member Posts: 1,613
    edited February 2022
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    We may be starting radiotherapy and drug concurrently at the rate RT booking is going. Was quoted 7 March for start on the breast! RO/MO are going to try and move that earlier but there is so much pressure on the system here it may not be possible. No way do I want to be off treatment for 6 weeks!

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited February 2022
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    Sondra, can you start treatment immediately and then stop treatment when you go in for radiation?