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Posted on: Feb 1, 2018 01:18AM - edited Feb 1, 2018 01:19AM by geekness
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.
Posts 61 - 75 (75 total)
Dec 14, 2020 02:18AM Ashlyn wrote:
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?
Aug 20, 2021 06:52PM candy-678 wrote:
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???
Aug 21, 2021 03:04PM - edited Aug 21, 2021 03:15PM by ShetlandPony
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.
Sep 2, 2021 04:48PM candy-678 wrote:
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.
Sep 2, 2021 05:54PM - edited Sep 2, 2021 05:54PM by 2019whatayear
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
Sep 4, 2021 08:43AM candy-678 wrote:
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....
Sep 4, 2021 10:52AM ShetlandPony wrote:
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,).
Sep 4, 2021 03:20PM 2019whatayear wrote:
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!
Sep 4, 2021 07:11PM candy-678 wrote:
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.
Sep 7, 2021 02:34PM candy-678 wrote:
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.
Sep 8, 2021 02:38PM 2019whatayear wrote:
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.
Sep 8, 2021 03:50PM - edited Sep 8, 2021 04:53PM by ShetlandPony
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.
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.
Sep 9, 2021 09:31AM candy-678 wrote:
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....
Sep 20, 2021 02:27PM candy-678 wrote:
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.