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Lynparza/Olaparib Anyone?

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124

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  • star2017
    star2017 Member Posts: 370
    edited February 2022
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    I started Lynparza and then a week later started radiation. I've been okay, but mine was only 13 treatments for a bone met. I know the chest treatments can be more involved.

  • sondraf
    sondraf Member Posts: 1,613
    edited March 2022
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    Resurrecting this thread so it is a bit more to the top of the forums!

    Hollyli - this drug is not in standard use for breast in the UK at this time so my onc had to do some arranging for a few weeks and ultimately it looks like it came through the compassionate use channel. I wasn't in crisis so a few weeks to wrap up the rads and get the drugs was ok.The timing of L4 deciding to get its grow on, being caught early on my scan cycle, and fitting in with rads scheduling, worked out surprisingly well.

    Almost two weeks in and so far its been a good ride. Man I hope this is working because I feel better on this than I did on Ibrance for sure. Only had to take one anti-nausea pill so far, and that was a few hours after having my covid booster and consuming too much pizza at lunch, so not surprised. There are a few moments here and there in the day when i get a "tinge" - sort of like the pre-hot flash moment of dread, but I took star2017s advice and focus on other things until it goes.

    I do get fatigued earlier in the evenings now but my sleep is a MESS. I went from like 5-6 hours light broken sleep to trying a low-dose antidepressant and sleeping 8-10 hours, which was great until I wanted to sleep them in the day and was up all night. I backed off those and now its 8 hours at night with vivid dreams, a few nightmares, and a sleep paralysis episode the other night. PT cleared me for stationary cycling which does help, but I have peeling/healing underboob skin from rads so need to be a bit careful on the sweat situation.

    The two pills a day is a bummer, though. I kept my 7pm pills scheduling but obviously had to add in 7am! I always worry I will fall back asleep and miss the pill window, but the cats help keep me honest.

  • candy-678
    candy-678 Member Posts: 4,126
    edited March 2022
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    Thanks Sondra for bumping this Thread.

    I am still on Lynparza. Almost 7 months now. Dose reduction in month 3 I think. I still have episodes of nausea/lack of appetite, but they are way better than at first (hence the dose reduction). The fatigue is worse than with Ibrance, in my opinion. But, 2 scans later I am still "stable", no shrinkage, but no growth. So Lynparza continues.

    Since the site overhaul my profile does not reflect the Ibrance discontinue and the start of Lynparza. I have tried to fix it, but cannot. I emailed the Mods. Hope I can get my profile fixed to reflect my current treatment.

  • star2017
    star2017 Member Posts: 370
    edited March 2022
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    HI Candy, I kept thinking I was doing something wrong when updating my profile, but I think it must be some bug, as you say. I'm so glad to hear things are stable!

    My recent PET-CT showed no new mets, femur and sacrum met are inactive, and hip met has decreased uptake. There's a small fracture there that probably is also affecting it. I'm a little over 2 months on Lynparza. Hoping for continued good news.

    The fatigue is definitely worse on Lynparza than on Verzenio, but the nausea is now rare for me and at least there's no GI upset as with Verzenio.

  • sondraf
    sondraf Member Posts: 1,613
    edited April 2022
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    Im such a plank, honestly. I was taking my evening dose and you know how it comes in these giant boxes? I keep my cancer-specific drugs in a discreet little box that OH or I grab when the phone alarm goes off. So I put strips of drugs in there, or the whole box if it will fit.Tonight I was emptying one of the boxes and noticed it said 2 tablets twice a day. Ive been taking one in the morning and one in the evening!!! I rectified that with this evenings dose, and its only been two weeks, but honestly!

    Too many drugs at the moment - the letrozole, the mirtrazapine to help me sleep, the anti-nausea meds in case, the lansoprazole, the painkillers - most of it is when needed, and I dont need most of them, but being handed three at the same time at the start of a new drug well, I guess I just got confused.

    Probably should have called the pharmacy hotline that is written in size 7 font on a piece of paper somewhere, but its Friday night and it wont reopen before Monday anyway.

  • star2017
    star2017 Member Posts: 370
    edited April 2022
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    Might want to ask about the leteozole with Lynparza. Is it needed?

  • sondraf
    sondraf Member Posts: 1,613
    edited April 2022
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    I did ask before we started and onc chose to keep me on it as I was 100% ER/PR at the start so it seemed prudent to stay on it. She said she would pull me if I had intolerable side effects from the letrozole.

    I clipped all the L into two pill strips so I just have to grab a strip. So far no increase in side effects thankfully!

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited April 2022
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    Sondra - oh dear! I am glad you're taking the four pills daily now. I wish I was still on Lynparza. I have been chatting with my oncologist asking if the other parp inhibitors work in the same way as lynparza. I'd like to try a new parp. There have been really no studies on it. After lynparza (for nearly two years), I went to carbo/gem for 4 months, then to taxotere for 5 months, and Trodelvy (3 months). Trodelvy isn't working now, so I am on to something else. I had the best run on Lynparza and am craving those days when all it was was just pills.


    Star and Candy - glad olaparib is doing the trick! I hope it stays that way for many years!!

  • sondraf
    sondraf Member Posts: 1,613
    edited April 2022
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    i have had terrible, unrelenting indigestion since Monday - was doing just fine and its like a bomb went off in my gastro tract. Ive called in four times about it - I dont think they quite get that this isnt just "oh I felt off for two hours after breakfast" its climbing the walls level of irritation and pain around the clock. I haven't eaten anything substantial since Sunday and the Gaviscon i was advised to take while the PPI starts to kick in is just disgusting. Threw up last night and actually felt a bit better.

    Ive been advised to take a break from the olaparib to get my stomach to calm down, so I missed last nights dose. We are supposed to be going to Italy on Monday for 4 days and I dont know, thinking of cancelling because right now leaving the house sounds insurmountable,never mind getting on a plane and going to another country :( I just want a vacation!

  • candy-678
    candy-678 Member Posts: 4,126
    edited April 2022
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    Sondra- Oh my!!!! I have had GERD/indigestion for a long time---way before Lynparza. I use famotidine 40mg a day. Primary doc said I could use it twice a day if needed. I have not had an increase in the indigestion since starting Lynparza. For me the Lynparza causes nausea, no vomiting. But a feeling of nausea that comes in waves and even the sight of food makes me feel sick. Some days I feel fine, then out of the blue it will hit. I will feel fine, make dinner, eat, and then feel sick right after eating.

    I am sorry you are struggling right now.

    I am not a "vacationer". Never have been. But I know I would not enjoy it now with the fatigue and the nausea that comes on suddenly. I don't even want to make a dinner date with anyone because what if I feel sick and have to cancel. Or get to the restaurant, take a bite of food, and feel sick.

    These cancer drugs are hard for QOL.

    I hope you get relief and can restart the Lynparza and can tolerate it better. What dose are you on? Maybe a dose reduction. I was on the 600mg a day for the first 2 months and then lowered to 500mg a day. It did help the nausea---- was way worse with the 600mg. I still suffer, but not as much as before.

  • sondraf
    sondraf Member Posts: 1,613
    edited April 2022
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    Currently on 600 and felt absolutely fine (well, once I started taking the full dose!). This is about 3 or 4 weeks in to the 600.

    Id been having indigestion troubles off and on with Ibrance but this is next level. The lansoprazole just got lost in the overall shuffle of everything in the last few months so I didn't think anything of it - it had been prescribed to go with the ibuprofen for pain management. I dont have the refill yet and called GP this morning to see if they had filled it but they can't find the actual prescription in my notes. *eye roll* At least that gives me tomorrow to get someone at the hospital to sort that out for me.

    Its a bit better today, still points of uncomfortableness but hoping we are on the down slope here. Its utterly exhausting for sure!

  • sondraf
    sondraf Member Posts: 1,613
    edited April 2022
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    So it seems as though I caught either one hell of a gastro bug or that plus the lynpqrza combined created havoc. Or it was the super new Covid variant but none of my lateral flow tests were positive so who knows. Enough ibuprofen, senna, simethicone, clarityn, warm water, and rest and I'm almost back on track. Nurse will be calling tomorrow and I feel I could probably go back on treatment tomorrow night or Tuesday.

    Missed our trip but I'm so happy to feel better compared to Friday and last week I'm not that bothered. And I was able to have a few sips of very nice champagne at our friends party this afternoon which no chance on the drugs! It was good to get out but thr fatigue tonight is quite a bit!

  • sondraf
    sondraf Member Posts: 1,613
    edited July 2022
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    Resurrecting this for a quick question. I was wondering if any other ladies on this drug had issues with dairy? I didn't think I was lactose intolerant, but lately Ive noticed nausea and fatigue (ilke, I need to sleep right now fatigue) about two hours after lunch, and that is when the horrible mouth taste also starts up. I don't have milk at breakfast as I don't eat cereal, but I usually have a small amount of yoghurt or cheese at lunch. Yesterday I had veggie sushi for lunch and no problems.... until I ate a bit of yoghurt at 4pm.

    I take my pills at 7am and 7pm and checked the studies - peak blood concentration is before that afternoon window where I had been having problems.

    Guess Ill try avoiding dairy for a few days - almond milk in the coffee this morning - and see what happens.

  • candy-678
    candy-678 Member Posts: 4,126
    edited July 2022
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    Sondra- I am a diary addict. I have milk every morning with breakfast-- cereal and a glass of milk to drink. And I LOVE cheese and think I eat quite a bit of it. I do have some nausea, but I was not attributing it to the dairy. My fatigue can be any time of the day, but I do take a 30-45 minute nap in the afternoons-- 2-3 hours after lunch. No mouth taste. I take my pills at 7a and 7p also.

    Try avoiding dairy for a few days and report back here.

  • star2017
    star2017 Member Posts: 370
    edited July 2022
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    I haven't noticed any obvious connection with dairy,. I love cheeses, but try not to have too much bc it immediately leads to weight gain for me. My most consistent dairy is milk in my tea and occasionally a slice of cheese in a sandwich. No obvious nausea, but Ive read from other people taking it that dairy can be a trigger.

  • star2017
    star2017 Member Posts: 370
    edited July 2022
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    I was off Lynparza for 12 days due to covid. After restarting some of those initial symptoms of fatigue and nausea are hitting again.its been a little over 2 weeks since I restarted. Hoping things ease up soon.


    My doc has mentioned reducing my dose in the past bc of fatigue, but I'm too scared to. Next scan is this week.

  • sondraf
    sondraf Member Posts: 1,613
    edited July 2022
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    Interesting star - have you otherwise had good bloods on it? Im concerned about Covid but as neutrophils are so so much better than they were on Ibrance, I think perhaps Ive gotten a little lax thinking I wouldn't necessarily have to take a break. I hope L is still working for you!

    For me its definitely dairy that is the trigger. The other night we made crostini with chopped tomatoes, basil, and mozz pearls and ho man, I did NOT feel good that night. Had to run for the anit-sickness tablets and I just felt miserable and tired and heavy digestive system. That carried on into the next day too. I also need to watch how much I eat at dinner I've found as well - yesterday I just had some white rice and soy sauce and that was it and felt great this morning! I think there is possibly something going on with wheat so I may just need to adjust what I eat and when - veg and meat dinners are much more comfortable than anything with a wheat starch.


  • sondraf
    sondraf Member Posts: 1,613
    edited August 2022
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    Thought I would post up my chat with the doctor about anti-viral and antibody treatments in here, for the future (and not to detract from what is going on in the main My Cancer.. thread at this time)

    Finally caught the call from the hospital in charge of the paxlovid yesterday (different hospital and organisation to my main one, and NHS not private) - they confirmed paxlovid was not an option due to drug interaction with olaparib but could offer me "a three day drip of an hour for the first day and a half hour for each subsequent day so when did I want to come in". Now, no one uses drug names here which drives me insane - they speak to everyone like you are 5 years old and are ESL - so I don't know which drug they were offering on the drip. Maybe Remdesivir?

    I then asked where this would be given and she told me at the hospital she was calling from. I had to ask where that was and its a long journey from home - at least an hour and two train changes each way - while Im at peak infection status AND feel not great. Ah NHS, never change. I raised that as an issue and all of a sudden there was a one-day, half hour drip available, which I think is Xevudy. I was feeling better by yesterday so I just said look, I need to call my oncologist about this and Ill get back to you. I never called MO because frankly I didn't want to deal with this when I was feeling better and better practically by the hour, and I didn't want to shove some more (somewhat) experimental drugs into my system and potentially upset the fine side effect balance I had finally found with Lynparza. Or what if I had an allergic reaction? Better to let it ride and get back on the cancer drug ASAP on Monday.

    I suspect had my neutrophil count been consistently lower like it was on Ibrance, like hovering around the 1.5 level then perhaps it would have been a right call for the antivirals. But Im almost always close to 3 on Lynparza so the week off and letting the body do its thing naturally made sense in this case.

    TLDR; paxlovid = no bueno for Lynparza, but there are other IV options available depending on your situation, so fret not!

  • candy-678
    candy-678 Member Posts: 4,126
    edited August 2022
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    Thanks Sondra for your post. I have not gotten Covid,,, yet,,, and I am in the U.S. but I wondered what they might suggest if I do get sick with Covid. Probably not Paxlovid then. But maybe something else. Or just pausing the Lynparza and letting my body fight the virus. My White blood counts are low with Lynparza,, Not as low as with Ibrance, but still low. I just hope I do not get Covid, but I know I may at some point.

  • star2017
    star2017 Member Posts: 370
    edited August 2022
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    They didn't say there was a problem bw Lynparza and paxlovid. It was my blood thinner that's an issue. There is another antiviral called molnupiravir. It's another oral pill. I was off Lynparza for 12 days when I had covid. The molnupiravir really helped.

  • sondraf
    sondraf Member Posts: 1,613
    edited August 2022
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    Im not on any blood thinners, though. Supposedly the UK has allowed the other one (molunpiravir) but that was not offered so quite possibly there isn't any in stock.

    Did you have to test negative before you went back on the Lynparza? Or was it to finish the drug course?

  • candy-678
    candy-678 Member Posts: 4,126
    edited August 2022
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    I am on a blood thinner. I will have to read up on molnupiravir. I have not heard of that one. I hope I will not need these drugs, but I have not gotten Covid yet and I feel my luck will run out eventually.

  • sondraf
    sondraf Member Posts: 1,613
    edited August 2022
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    I think what I wish I had done is had a conversation with oncologist about covid management strategy so that when this finally happened I would have known it was ok to go ahead and do the drugs, her preference, etc. But thats just not how things work here (drives me nuts!). You may want to touch on it with your oncologist next visit, though, about having a short plan in place for if/when you get Covid - who to contact, what about the antivirals, her likely proposal for treatment (pause? continue? etc). That may give you some peace of mind too.

    Im almost got a negative result (was just very faint this afternoon) so I may just about make the Monday MO appt. Will test as late tomorrow night and Sunday night as possible. Its more or less ok, just some passing fatigue, annoying post nasal drip type cough, and post nasal drip. Definitely back on the mask train and limiting office time to empty days only!

  • candy-678
    candy-678 Member Posts: 4,126
    edited August 2022
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    Sondra- I will talk with my MO. I have scans and MO visit Aug 15. Especially if scans are stable, and no need to discuss next cancer treatment, then I will ask about Covid treatment plans if still on Lynparza.

    Also, wondering about testing options. I am in the U.S. and wondered how I get home test kits. I will post on another Thread too-- for more people to respond.

  • sondraf
    sondraf Member Posts: 1,613
    edited August 2022
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    Hey Candy - I saw this noted somewhere else on t'Internet, but you can order them free here:

    https://faq.usps.com/s/article/At-Home-COVID-19-Test-Kits

  • star2017
    star2017 Member Posts: 370
    edited August 2022
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    They had me test at day 7 of covid, still positive, and day 10, faint positive. At that point they said just to come in at day 12 for blood work, and as long as everything looked good, I could restart.

  • vlnrph
    vlnrph Member Posts: 493
    edited November 2022
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    Having read the 2022 posts here, I'll go back to the beginning and review those but wonder whether all of you have a BRCA mutation. That was the original requirement for taking a PARP inhibitor. Recently I've located research and trials with other genetic abnormalities, especially in women with ovarian cancer.

    I'm considering options if my abdominal MRI with Eovist contrast next week more clearly shows evidence of liver metastasis. Three spots in the right lobe were seen on last month's “routine" PET scan. Follow-up imaging found numerous subcentimeter bilobar lesions. I'm thinking these are not benign.

    The NP who works with my oncologist suggested waiting a couple of months in order to allow for possible growth of the tumors! I imagine that strategy might produce a candidate for biopsy but I want to get specific radiological information ASAP and start a new treatment since it looks like Verzenio has failed. Added details below..

  • vlnrph
    vlnrph Member Posts: 493
    edited November 2022
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    I see this website dropped all my background so here's an abbreviated chronological biography:

    both ILC and IDC: rt mastectomy/DIEP 4-2011, micromets in sentinel node; axillary dissection 5-2011 (0/24); TC x 4 completed 8-2011; started tamoxifen; lymphedema began 9-2011; switch to letrozole 3-2014, trigger finger 2015, change to exemestane; stopped AI after 1 yr; bone mets 8-2018: Zometa, rads to lower spine, Faslodex & Verzenio; 11-2018 vertebroplasty+rads to upper back

    Hopefully the new format under development will allow posting a condensed version of our history. I don't like how the long lists some of us have are arranged. Each takes up half a page, particularly for those in the metastatic club. Previously I was able to keep my dates and “milestones" in the signature, nice and compact.

  • candy-678
    candy-678 Member Posts: 4,126
    edited November 2022
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    Vinrph- Yes I have the BRCA mutation. They biopsied my liver met and the results showed the BRCA mutation. Thus I am on Lynparza.

  • vlnrph
    vlnrph Member Posts: 493
    edited November 2022
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    Candy, it sounds like your tumor demonstrated a mutation but it's not germline (in every cell, passed on by hereditary means). If so, and single agent PARP inhibition has been keeping you well for a year now along with Lupron and Xgeva, that's great. You also had a nice 3.5 year run on letrozole & palbociclib prior.

    It must have been a shock for you to go from initial diagnosis to dual metastatic sites in such a short time. Plus, your chemo included Adriamycin, the "red devil". You're younger than me since your treatment required ovarian shutdown. It's sad that much of our survival has been during a worldwide pandemic.

    I got 48 months out of fulvestrant + abemaciclib. All those bilateral injections every 4 weeks created enough scar tissue that it showed up on my recent PET/CT. I'm worried about possibly having liver disease because jaundice can occur and I never looked good in yellow - that's supposed to be a joke…