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Niraparib/Zejula: Starting Today!

Hi everyone,

To my surprise, my Pharmacy appointment was not just an induction/informational meeting, but the actual dispensing if my new meds.

Fortunately, I brought my daughter along to ask pertinent questions, even though we’ve been studying up on the drug for the last six months.

We also debated the best time of day to take it, but I was firm about taking it in the morning, and managing any digestive / nausea side effects just the way I usually would, because I could not deal with insomnia.

So, this morning I made coffee anyway, then took an omeprozole, along with an Ondanstron, 40 minutes before taking the meds.

So my questions to you ladies on the PARPS:

Did you continue to drink coffee?

Do you take a prophylactic anti-emetic before taking the PARP?

Tomorrow, I am going to take the med without the Ondansetron, just to see how I do...

Thanks for any advice you may want to share,

Hugs, too,

Laura

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I can’t give any advice, Laura, but good luck with it. It’s great that you’ve started it so soon!

Thank you for keeping us up to date. It is really helpful. 🤗

My CT showed that something small remains on my liver. I have to have a PET scan to identify it. I’ll be starting the PARP after the scan.

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That’s interesting.

Kind of similar, only I am not having any further investigations yet.

Starting the PARP is very exciting, and a bit daunting, when they remind you of ALL the possible/probable side effects.

They also give you 4 sets of Blood Test forms, because you have to have weekly blood tests the first month!

Sitting here now, my usual enormous appetite has faded away.

So one hour after taking the meds for the first time, I feel slightly woozy and a bit foggy, like I used to feel on first line.

Hopefully, the chemo fog will dissipate after a few days..,

Hugs,

Laura

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I forgot to mention that my first couple of weeks on Zejula I felt like a Zombie. Very strange sensation and I didn't like it. I was actually going to stop it and take my chances. In the third week I seemed more myself. Whatever that is. lol. Today, I can say it doesn't feel like I'm anything. I take so many supplements that it's just another pill to swallow. If you read up on those ant-nausea meds, one of them was surprisingly meant for the brain than for the stomach. I can't remember which one, but, I will look it up. That's actually what made me not take it.

Be back to you.

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These are Domparadone and Metoclopramide. They are both prescribed with Chemo, but are drugs that work by inhibiting dopamine in the brain. They also encourage your stomach to empty faster, and when you already have diarrhoea, that’s not a good thing!

I have a drawer full of them, because I refuse to even try them. I take a very few Ondansetron for bad nausea and mostly use Cyclizine, which is almost totally benign, for every day use.

😻

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I have a drawer filled with these as well! lol. You are correct on the Cyclizine being benign. It is the same as Anti-vert and benedryl. I sometimes have to take when we are boating for a long time in rough seas.

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That is so good to know! I am on Lynparza and it’s been so hard with the extreme fatigue. I have never been like this .. can’t even get into tv and have bad headaches and flu symptoms. Can’t eat at all. I cut the dose in half and the symptoms are just as bad. I was going to see if I could switch to Zejula. So you think once my body gets used to it ... I won’t feel like this anymore? My number is up to 44 and climbing but I can’t imagine living like this the rest of my days. Hugs Xoxo

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Hi, Cyndy. I'm on in a FB group for PARPS and Drugs. It's mainly for women with OC who are on these PARPS. From what I read, Lynparza is pretty successful with BRCA positive. Seems to be the preferred top 3. If you give your body some time, it will get use to it. When my onc discussed going on a PARP, I ended up insisting on Zejula because I THOUGHT I heard that it was easier on the bloods and good for BRCA neg and positive.

My platelets crashed after 3 weeks, but, then dosage was cut back and they came back. Oddly enough, my Hemoglobin and the rest stayed normal.

My CA 125 has been creeping up as well. 1 month ago it was 35. I go next week again for bloods.

Hoping that your CA and mine is climbing due to inflamation. (which is side effect of the PARPS). I'm on a cleansing diet this month and feel better already.

Hang in there and you will be good. Although, flu symptons are the WORST because your body just shuts down and you're achy.

Let's keep each other posted.

XOX

Marisa

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Marisa .. thank you so much for this. I have been so scared as I started the Lynparza at 22 and now has doubled to 44. Plus the awful side effects. I also believe that inflammation can contribute to the rise and am taking ibuprofen to help. I have a lot of abdominal pain and after all the surgery I have had ... know I have a lot of scar tissue. I was thinking of asking for Zejula but have learned that is just as bad 😞. I will keep going and also will look for that FB group! The support from all the other women in the groups help me so much and we all stick together and help each other. I pray for all of us every night. I will keep you posted and thanks again... this has eased my mind a bit. .

God Bless! 🙏

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I know what it's like to be scared to death. The screaming inside our own heads is overwhelming. Glad I could put you more at ease. Statistically so far, Lynparza seems to have a higher success rate.

This group is way more supportive. The FB Parp Inhibitors and drugs is much more narrowed down to the PARPS and provide a lot of great information.

Hope to see you on that.

God Bless us all!

Marisa

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Yes I just joined it and thank you so much again. May God keep giving us all the strength we need to live with this horrible disease. 🙏

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Wonderful! I look forward to seeing you on there!

XOX

Marisa

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Although I just started the Zedula, I feel that the side effects are not only manageable, but will be far less devastating than what you described.

Every one is different and I think you shy give it a try, if it is possible.

Just my opinion!

Best wishes,

Laura

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That’s great news laura! hope you feel ok on it!

Good luck xxxxxx

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Thanks, Claire,

Can’t believe the day has finally arrived when I have my PARP!

Hugs,

Laura

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That’s great news. I’m wondering if the odensatron could be contributing to making you feel woozy? I just found out I have a small blood clot in my calf so have to give myself shots of blood thinner twice a day-and have a CT scan tomorrow. My CA 125 is 5 which is the lowest it’s ever been but I have a pain in my side-3 months after frontline.

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Sorry to hear about that blood clot!

What is it doing in your calf?? With a CA-125 of 5, 3 months after front line, I would not have expected that.

Meanwhile, I was wondering about the Ondansetro myself.

I am feeling good and just ate a falafel in Pita bread!

So far so good!

Good luck on your scan,

Hugs,

Laura

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Good luck on the new regime.

Fay

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Thanks! I feel lucky now, so 🤗 I plan to make the best of this new adventure.

Hugs,

Laura

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Great news Laura x when I was on olaparib the only restriction was Seville oranges and grapefruit! I was on twice a day dose 7am and 7pm and made sure I didn’t eat after 7pm or I would be up around 1am vomiting! Somehow the not eating seemed to alleviate this for quite a while x

I truly hope your side effects are minimal and your bloods stay well and of course that it chases those aliens away good and proper xx

Hugs and best wishes

Bev

Xx

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Thanks so much for that. So far so good on my first day.

Walked around Bath, shopped for groceries with my daughter, was able to think, so resting now before more computer work.

Hugs,

Laura

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Hi Bev... did the side effects from Lynparza ever go away and you could tolerate it? The extreme fatigue and flu like symptoms have put me down ... I have had it 2 weeks. I cut the dose in half and the same thing. Are you on another PARP that you can tolerate better now? Thanks! 💖

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I’ve sent you a message xx

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Hi, Laura. Great news on starting Zejula! I started Zejula in October 2018. I had been prescribed the same anti-nausea meds you have. I started first couple of nights taking the Ondansetron but then tried without it and I had no nausea. I started with 200 mg and then had to drop down to 100mg due to platelets dropping. Now I alternate between 200 and 100 every other day. I take it at night and surprisingly had no insomnia. I do take neurontin and benedryl at night to sleep. Seems to be working. It started to affect my digestive track but then stopped. I continued to drink coffee, but, just one cup in the am. My body didn't seem to want more. Then I lost my taste for alcohol. I'm a cheap date...I can nurse one drink for 3 hours. lol.

I know you will have a good experience with Zejula. Your positive outlook on everything will guide your response. Good luck! XOX

Marisa

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So great to hear your experiences.u

It is really helpful.

Your taking different dosages on different days seems very wise and clever.

So far so good on this first day.

I am going to try without Ondansetron tomorrow, but I am still going to take the meds in the morning.

I am really curious about how this will effect my unique blood.

So tomorrow is another day...

Be well,

Hugs,

Laura

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Hi lovely,

My special person was on Niraparib for 11 months, she kept her diet normal even drinking coffee, her oncologist advised her to take them at night as it would help counter the nausea but she’s completely opposite to what the label side effects say if it says insomnia she’ll sleep so it really depends on you and your body and how you deal with the meds in general xxx

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Interesting.

I going to take them in the morning, unless that proves to be wrong for me after all.

I felt good all day today, but it was only the first day.

I wonder how I will sleep tonight and how tomorrow will be...

Hugs,

Laura

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Good luck with the PARP, Laura. I hope it is really successful for you, and that any side effects ease off quickly for you.

Vicki x

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Thanks, Vicki,

Off to sleep now, after a good first day.

💤😻,

Hugs,

Laura

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Hi Laura! I pray you do well on this and please keep us updated on the side effects. I have struggled on Lynparza and wondering if Zejula is not as bad. I pray this works for you and agrees with your system. Keep us posted and God Bless! 🙏

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Yes! I think this will be doable. But I will report anything that comes up. So far so good.

Just a little speedy, even though I am taking it in the morning.

I am on a 200 mg dose.

Best wishes,

Laura

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Best of luck on your parp. From your previous posts I know this is something you really wanted and hope that this is effective treatment from you!!

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Yes, Linda,

I have looking forward to this with great curiosity.

So far so good, but it is just the first day.

Fingers crossed we are all good tomorrow.

🤗,

Hugs,

Laura

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Hi Laura, on Oliparib I didn’t take any other meds to start with as I know some ladies don’t experience side effects,however, I started to feel nauseous by day two and threw up so I started to take cyclizine as this worked well for me on chemo. My nurse advised me to carry on taking it for a couple of weeks and then to try without .By week three I stopped taking it and I haven’t been sick since and I’ve been on it a couple of months now.

I’ve still been drinking coffee although I’ve had some kidney issues so I mainly drink other fluids.

I was having weekly blood tests, now fortnightly but thankfully my bloods have been hardly effected.

The only side effect that has lasted is fatigue which I think goes a bit beyond how I was feeling after surgery and chemo. It’s all do-able I just feel like I need longer in bed on a night because I sleep so deeply- no insomnia for me !

We all react a bit differently so I’d see how it goes . Even if you get side effects they will probably subside once your body gets used to it . I feel just about normal but with a bit of tiredness that kicks in on an evening but during the day I’ve got my energy back and I’m out and about as normal- fingers crossed you’re the same 🤞🏻! Clare xx

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Than you, Clare. That was a wonderful description and a big help.

I am going to try only Cyclizine tomorrow. I have meetings every morning until the weekend, so I hope my head stays on straight!

I felt pretty good all day today. Very thirsty though, but bottles of water by my bed.

I am tired tonight and wonder how I’ll sleep.

This is an adventure.

So glad there are so many of us on this trip.

Hugs, 🤗

Laura

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Good luck Lindaura. Stay positive as I do think that helps. X

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Thanks🙏🏼,

I shall try, but right now it’s easy because I am so Guri!

Hugs,

Laura

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Good luck!

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Thank you!

🤗

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Hi Laura, other than heartburn I didn't get any side effects on Zejula but there again it wasn't effective for me (I'm BRCA - ve). I have a coffee first thing but then drink very few caffinated drinks.

Good luck with Zejula. Wishing you a long and fun filled remission. Xx

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Sad to hear it did not work for you, but glad to hear you are drinking coffee.

I love my special blend and could not drink it at when I was first sick or all through first line. But now it tastes delicious!

Hugs,

Laura

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Hi Lindaura, I will look forward to seeing how you get on with it, I am going to ask my oncologist about it depending upon the result of scan.

Sending lots of love 💕 hugs 🤗 and positive thoughts xxx

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You are just like me: anxious to be well and to try this new thing.

Good luck with that scan,

Hugs back at you,

Laura

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Hi. I've been on Niraparib for 18 months now and I very rarely need any anti-sickness medication. I did for the first couple of months, but then after that hardly ever. I only ever take it if I feel nauseous - I take too many other medications to add something that might not be necessary. I take the drug at night to keep it separate from my other meds I have to take in the morning. I drink all sorts of caffeinated drinks, but only in the mornings, swapping to decaf versions after lunchtime. I don't have insomnia as such, but broken sleep - sleeping for two hours then waking, though I usually go back to sleep quickly. It's nothing like the insomnia I had on chemo and afterwards, when I'd still be wide awake at 3 in the morning, and sometimes even 5. When I went back to work, after frontline treatment, my GP gave me a short course of sleeping tablets, to break what had become a poor sleeping habit.

Hope it works as well for you as it has for me - first and second line chemo brought my CA125 down to 50, but on Niraparib it has stayed between 18 and 22 for over a year.

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That’s really good news. Your experience is really valuable.

Besides being plain fantastic.

I just hope my body follows in your footsteps. You are one of the pioneers!

Bravo!

And hugs,

Laura

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Laura I am so pleased you have started on Niraparib, I take my Niraparib in the morning with boiled water and fresh

lemon. I took domperidone 30 mins before taking the capsules, I only done this for 1 week then stopped taking the domperidone. I’ve had no nausea with this regime and do manage a good 5-6hrs sleep now.

I hope all goes well with Niraparib and not to many side effects.

Hugs Ellsey xx

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Thanks so much for that little capsule about your regime.

I am going to take Cyclizine one more morning before taking the Niraparib, only because I have a business meeting in the morning tomorrow.

Normally, when starting anything like this, I would NOT be going to important meetings, but an opportunity came up and I could not say no.

BTW, I noticed that I was quite speedy to day, like being on deximethizone again. But I enjoyed it!

Hugs,

Laura

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Laura I was quite hyper and erratic the first week I was on 300mg, it passed about 1week after starting them.

I have my first scan after starting Niraparib on the 9th May, I am a little bit disappointed as my oncologist appointment is the 8th of May so won’t get to know the results until my next oncologist appointment in June.

Ellsey xx

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That’s not fair! I wonder if it could be rescheduled?

I had to wait 10 days for my results and I was on pins and needles the whole time!

🙀

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Hi Laura,

I did not take meds to start but got heartburn early on--so now take something in the morning which works great. I got nauseas a total of once--the first week--with NO pre-meds and none since so no I did not take anything for nausea. My biggest side effect was fatigue and joint pain (not stopping me from doing anything) and the fatigue abated after a few months. My onc gives me something for the joint pain. All in all, I find it tolerable and really gives you freedom being in pill form as opposed to an infusion. I have been on Olaparib for over a year but now relapsing. I will be posting about all that after an appt I have next Wednesday with a very hopeful clinical trial.

Wishing you LUCK and hoping its a walk in the park for you!!! :-)

oxooxoxo Judy

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Oh Judy,

I am sad to hear you are relapsing even on Olaparib, because you are BRCA 2 positive and I would be hopeful that it would keep the beast away forever...

I hope you get some good news at your next appointment.

I feel so optimistic now, but one never knows.

Other than your relapse, I hope to be like you, active and adventurous on this PARP!

Hugs,

🤗 Laura

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Hi Laura

What dose are you taking?

I went off coffee after first chemo! Drink gallons of tea. I take Niraparib at night after our evening meal. Sleep not a problem. Take ranitidine for acid morning and night and cyclizine if I feel particularly nauseous. As I feel nauseous most of the time it's a difficult choice, although eating helps but I have developed an enormous "spare tyre".

Still not sure if Niraparib working for me but fingers crossed. Bloods staying steady but Scan showed small increases in lymph node sizes. Consultant happy to keep going with Niraparib until another scan or more symptoms.

Wishing you lots of luck .

Janet

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Thanks, Janet.

I do hope the Niraparib works for you and those signs in your scan we’re just a temporary glitch.

I am on 200mgs, which is the dose my Onc stay everyone in.

I take Omeprozole every morning anyway, so that’s no problem, but I am loving my coffee again, so only in the mornings and tea after noon...

Did you ever notice a “speed” effect?

I like it, so I hope it continues.

Hugs,

Laura

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Hi Laura

Thanks for reply. Glad you still enjoy your coffee, husband drinks it and it smells great but can't face drinking it.

No have not had the speed sensation but sounds good! Could do with a boost.

Best wishes

Janet

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Hi, Laura. How did you do without the Ondansetron?

Hope your day is going well.

XOX

Marisa

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Hi there!

I did fine, but I took an omeprozole and a Cyclizine 40 minutes before taking the Niraparib. I am going to do this one more day, because of an important morning meeting tomorrow, but I will try without on Saturday morning.

Half way through my morning meeting today, I realised I was quite speeded up, like we all used to be when we were on the steroids during Chemo.

I have to admit, I enjoyed it!

Hugs,

Laura

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Hahahaha! I like that feeling too!

Sounds to me you will do well with this. I think I tried without the meds on a weekend just in case. I work at a company with practically all men. Didn’t want them placing bets on me as to when I would puke and where. Lol.

Enjoy your day!

Xox

marisa

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