Niraparib/Zejula: 10 Days in and So Far So Good

[Lindaura]

Hi everyone,

Hope you are all feeling well and enjoying what you can of this Spring weather.

So, I began my PARP last Wednesday, 24 of April, 2019.

I was cautious at first, afraid of nausea, so I took Ondansetron first thing in the morning along with Omeprozole. I have decided to take the PARP in the morning.

All day long, I felt great. Just had a little trouble sleeping that night. But the next day, I felt even better and was able to attend a luncheon business meeting - and could think clearly.

Although, in the middle of this, I could feel that I was a little speedier than usual, the way we are on steroids.

I felt great though and great again the next day for an even more important morning meeting.

From that day forward, I have stopped taking prophylactic anti nausea meds and have only had a few bouts of queasiness, where I have taken a cyclizine.

My appetite has been too good, tremendous- although I seem to get full quicker.

I was hoping for that side effect: Loss of Appetite, as I have gained too much weight ever since the end of first Line treatment, but I guess I will have to keep watching my weight.

I also did a lot of walking this week and although my legs and joints ache considerably afterwards, I noticed that I was much less out of breath walking up hills and I can walk further and further each day.

On Tuesday, I had my first Blood checkup and I got the results yesterday. All my bloods were in normal range, just the teensiest below normal for Haemoglobin, but even that result was higher than it’s been for 6 months!

So, I know it’s early days, but I am very happy with this PARP. I feel like my old self and that is an amazing feeling.

I just hope it is doing its job, killing cancer cells and stopping any new nodules from forming.

Best wishes to all,

Laura,

[Mptelesca]

That is great feedback, Laura! Sounds like you will thrive on this. I loved it when I felt like my old self! I dropped those two anti nausea meds. I found that I only get queasy for a few minutes and then it passes. You are strong and in a good place right now! Keep going!

Xox

marisa

[Lindaura in reply to Mptelesca]

Thanks, Marisa,

So nice to have good news after all the sad news this year.

Those sad situations strike fear in all our hearts, but right now it looks like a lot of us are on the upswing.

Hugs,

Laura

[delia2]

That’s fantastic news! So happy for you.💐

[Lindaura in reply to delia2]

Thanks Delia,

Hope your treatment is going well, too.

Hugs,

Laura

[Hidden]

Super! I’m delighted for you. Keep it up! 🤗

[Lindaura in reply to Hidden]

Thanks,

Good news is a great relief here.

Hope you are well,

Hugs,

Laura

[Doglover1410]

Brilliant! Well done.

I felt the ‘high’ on day one (I take mine at 8.30pm) was on a roll so much so my team made me a cup of tea and made me sit down because ‘they were worn out trying to keep up with me’!!!

I haven’t taken any anti sickness tabs, only a slight nausea about an hour after taking them but no more 😊

Have been drinking lots of water but waking up really thirsty and headachy but relived with a bottle of water.

So glad to see you having the full up feeling sooner, was starting to worry as that was only my real symptom right at the start...but now will stop worrying!

And my bloods were ok too!!

Go us....keep well!! xx

[Lindaura in reply to Doglover1410]

That’s great news!

Oh yes! Thirst! I have two bottles of filtered water by my bed now, keep waking up during the night, very thirsty and yes a bit headachy in the morning, but you are right.

It wears off!

So we are twins! Cool!

Hugs,

Laura 🤗

[Clar0805]

Fantastic- so glad you’re doing ok on the drug ! X

[Lindaura in reply to Clar0805]

Me, too. Fingers crossed, it does the job.

Hugs,

Laura

[Lyndy]

Yay! Xx

[Lindaura in reply to Lyndy]

😻

[Orsolini]

That’s great. As someone trying desperately to put on weight I would say don’t worry too much but I do understand it can be hard. So happy for you. Nicola xxx

[Lindaura in reply to Orsolini]

Dear Nicola,

It is so sweet of you to respond.

I hope you are feeling better.

I do remember the time I could not eat and was so fearful that I would just waste away.

I hope you can eat and digest, too.

You have really had a rough time.

My best to you,

Hugs,

Laura

[Birdsong222]

Great news Laura.

Excellent that you feel so well and like your old self. I think we all miss the person we were before OC.

As you know l am hoping for this PARB in a few months, so very glad to hear your doing really well. Lets hope this will be a good year, for all the lovely ladies on here. Sylvia x

[Lindaura in reply to Birdsong222]

Dear Sylvia,

Thank you for your encouraging words.

I hope you get the PARP soon and that your doctor starts you at the reduced dosage of 200 mgs.

So far so good.

Hugs,

Laura

[Maxjor]

Those pamphlets with side effects that could happen could scare anyone! So glad you have so few and that those you do have are actually making you feel so good. May it long long long continue and so happy to hear! oxox Judy

[Lindaura]

Thanks, Judy,

I am just hoping it keeps the beast at bay forever.

I say forever, because I am counting on being around for a while.

My mother is still going strong, if a bit frail, at 97.

Amazing. She only retired at age 90, so until this hit me, I just assumed I would be just like her.

Oh well,

Hope your plans work out and that your next scan fits the bill.

Hugs,

Laura

[gmc920]

It’s wonderful to hear that you’re feeling like your old self. Best wishes for long-term fantastic results!

xx Gina

[Lindaura in reply to gmc920]

Thanks, Gina,

How are you doing? Still on Avastin?

Still clear?

Best wishes and hugs,

Laura

[gmc920 in reply to Lindaura]

I’m doing pretty well, working part-time, and things seem to be stable, but not all clear 😕. I really need to post an update, as have had a few bumps since the beginning of the year, but don’t want to hijack your post with all that. Thank you for asking, and I’ll post an update soon 😊

Hugs,

Gina

[jools53]

OMG great news! This is where I’m heading! Two more cisplatin 🙏 to go then me parf! 🙏 so pleased for you let us prey it works for many this well! Good luck big hugs 😘😘😘

[Lindaura in reply to jools53]

Thanks, Jools,

Looks like a lot of us are starting the PARPS this year.

I was pretty excited about it and it still feels good.

🙏🏼Yes, hoping it does the job and I don’t just feel great for no reason.

🧚‍♂️Good luck with your current treatment.

🤗 hugs,

Laura

[SCWI]

I’m so glad you are doing well on the Niraparib, Laura, and lovely to hear you feel like yourself again. Very long may that last. Sophia x

[ellseybellsey]

Oh Laura I am so pleased to hear you are doing well on parp, I noticed I felt quite full for the day after taking it in the morning.I was weighed yesterday and I have lost 5kg since starting Niraparib, I am now weighing 56.4kg when I finished chemo my weight had gone up to 63kg, it’s been 4 months since starting parp, but a slow weight loss has continued.

Ellsey xx

[Lindaura in reply to ellseybellsey]

Thanks, Ellsey,

I don’t know how I will fair weight wise. I still get hungry 3 hours after eating and I want to eat all sorts of fattening foods.

I hate having to watch my weight, but it looks like i still have to!

It doesn’t help that everyone wants to give me treats and watch me enjoy eating again,

I just enjoy it too much.

You sound like you are at a good weight, so now you have to be watchful that you don’t lose too much.

What a conundrum!

Hope your bloods behave this time.

Hugs,

Laura

[BeeWild]

Fantastic news Laura long may you continue to feel and do so well xxx

Keeping everything crossed for you xx

Hugs

Bev x

[Lindaura in reply to BeeWild]

Thanks, Bev,

All fingers and toes crossed for you, too.

🤗 Hugs,

Laura

[Missmuffet32]

Hi Laura

Your news is great, so glad you’re feeling well again. And the side effects are not to bad. I think you’ll find your weight will drop off once you’re on it a bit. I have been on Niraparib for four and a half months now and so far so good. The oncologist said it’s working with no new cancer and my tumours have shrunk by about 20%. My only worry is my ca125 has went up from 18 to 87 but they said it’s not worrying them because the scan was such an improvement. ( But you still think the worst), I wish you well , and that you continue to beat the Beast for every day we feel great 👍 is a little miracle. Keeping my fingers crossed for you🤞And enjoy feeling like normal again. Best wishes. Margot 🙋💕