Looking for Zejula users

ToughAsTeal

Good morning all,
My first week taking Zejula (300mg) has gone well.  Very minor side effects.  No nausea or disgestive type problems.  I decided to take it at 9pm every night, to specifically avoid the possibility of nausea.   A few slightly elevated blood pressure readings (one while watching CNN this morning of the Whitehouse Insurrection. I should know better).  The most significant side effects would be short lasting, manageable hot flashes, and some increased joint/muscle/back pain and leg weakness that keeps me from doing a normal confidently paced walk.  

First bloodwork will be on Monday, so I hope that will also reflect I am tolerating it.  

I had a phone review with my oncology nurse on Tuesday. She wanted to know how I was doing since starting it.
In anyone’s experience, is it possible I still might experience side effects, after 1 week, and the Zejula builds in my system?  

Deletedbyrequest

They started me on 200. I had minimal side effects. Slight elevation in Blood Pressure. At the end of week two my platelets were dropping too low so they had me stop for a week then put me on 100. 

This works well. My concern is that it seems like everyone else is on 200 or 300. My oncologist seems to think that 100 is sufficient because of my size. But I’m sure that everyone else is around the same weight. (130) He said the drug is based on weight and 100 is sufficient . Would appreciate any feedback on this.

ToughAsTeal

Hi... I am 210lbs.  (But working in it! Lol). I think I read somewhere that 170 was magic number for 200mg recommended start dose. 

ToughAsTeal

This is from the Zejula box insert.... First-line maintenance treatment of advanced ovarian cancer:

 For patients weighing <77 kg (<170 lbs) OR with a platelet count < 150,000/μL, the recommended dose is 200 mg taken orally once daily. (2.2)

 For patients weighing ≥77 kg (≥170 lbs) AND a platelet count ≥150,000/μL, the recommended dose is 300 mg taken orally once daily. (2.2)

For other indications:

 The recommended dose is 300 mg taken orally. (2.2)

Deletedbyrequest

Thank you 
I did ask about starting on 300 and they did say that it was based on weight. I do hope that 100 will be effective. Very disappointed about the reduction in dose. 

Rosebud65

Your comments on the Zejula dosage being based on weight piqued my interest and sent me back to the box insert. I didn't remember reading anything about weight being a factor in setting the dosage, and when I read my package insert, I found no mention of weight at all. It simply said that the recommended daily adult dose was 300 mg, with reductions to 200 mg or 100 mg if serious side effects appeared. However, there was also the statement that my Zejula was prescribed for women with recurrent ovarian cancer, which I have.

This sent me to the GlaxoSmithCline website, to the section for health professionals. There, I found that the recommended dosage was different for first-line maintenance treatment of advanced ovarian cancer, which is not what I have. This dosage is based on weight. Mystery solved.

Deletedbyrequest

With my original package it did mention the stipulation that to take 300 mg your weight had to be greater than or equal to approx 170 lbs

Deletedbyrequest

My usage is for first line maintenance. 

Rosebud65

They must have two different package inserts, one for first line, the other for recurrent.

ToughAsTeal

My error. I had saved e-version of box insert so I can refer to it. You are correct...checked the paper insert and it does not give the same weight dosage recommendation.  I am maintenance (not reoccurrence). My apologies. 

Fearless

@Cecile21 @Rosebud65 @laphilly and anyone else on the conversation around doses...just a reminder to always defer to your oncologist on matters related to drugs, prescribed and OTC, and appropriate doses.  Instructions on boxes and inserts can be misleading or misinterpreted, as you've found through this discussion.  My mantra on the subject...When in doubt, call Dr. E (my oncologist LOL).  

ToughAsTeal

Yes, sorry.

Fearless

@laphilly absolutely no apologies necessary. This is the forum to raise those questions.  My note just a  reminder, in case anyone loses sight of it, that all drugs and doses are customized by your oncologist for your specific needs.  But bringing attention to information outside of that is an excellent way to raise awareness of questions that one may want to include in conversations with their doctor.  Never any harm saying...I read this or someone someone suggested that...would it be appropriate to me or why wouldn't it?  The more we're all armed with knowledge the better we can win this war.  So thank for raising what you did.  Always feel free to do that.  

SadieC

I started on 200 mg on December 2.  Felt fine initially, but the first side effect I had was higher blood pressure.  From there I started to get really bad headaches that lasted all day.  If I wasn't careful managing the headaches I would feel quite nauseous  and had very little appetite.  This continued for three weeks until my oncologist suggested a drug holiday over Christmas and resume taking Zejula on Jan 2 at 100 mg. (half the initial dose)  Here it is January 12th and I feel great!  What a difference!  Blood pressure still on the higher side but nothing like my numbers in December.  Though bloodwork and oncologist visit is next week, I feel much more confident staying on this regime.  My weight is 120 pounds so maybe that had something to do with the correct dosage?  I take it at 9:30 in the morning with no problems with sleep at all. (although with the higher dosage that was not the case) 

babs272

I am still hesitated to start zujula. Today I get my port out and hopping the beast is still gone. Thankyou all for your feedback on this zejula.. I read every post. Have a good day, we all need these .

nadiaC

Hi everyone! I’ve been taking 200 mg Zejula since Nov 18. No major side effects at first but my hemoglobin dropped to 78 and I’ve been advised to stop taking it for a week to see if my hemoglobin recovers. I may need a blood transfusion if it continues to drop. So I’m pretty anemic and this means I’m absolutely exhausted. Also my CA 125 has started climbing. It was 12 post chemo and is now 147. I have some abdominal pain and GI pain associated with gas and pooping. My doctor has told me I can have another scan if I want to but that she’s leaving the decision to me. I’m completely baffled by that advice....

ToughAsTeal

Good morning. I know how hard it is to constantly be hopeful and optimistic.  I could be nominated for best actress for the times I tried to smile my way through. Sometimes, it’s just for those around me.  My dear friend who is living with aggressive breast cancer has been a huge support. She is about 5 hrs away from me, so we message each other every morning. She was diagnosed a year ago, I was 5 months later. She repeatedly reminds me to give myself permission to have difficult moments, evenings, days, etc.  and is “on me” to always follow up with my oncology team.  Maybe recontact your oncology team? Let them know how you are left feeling about the option/decision of another scan?  Get more information to help you make decision?  Even if there isn’t anything else they say, perhaps it’s just one way to take a little control of something that is out of our control.
Non-medical, but the squatty potty has been a saviour to me, when having GI days.  

Will watch for updates from you😀. 

luvlife

I have been a participant in the Niraparib clinical trial for almost 5 years now, and even though the trial is over I remain on the same protocol as during the trial. I was a candidate for maintenance therapy after I had completed surgery and 6 rounds of standard chemo for advanced ovarian cancer.  I still do not formally know whether I am on the drug or the placebo. I am 210 lbs and was started on the 300 mg dosage, within 2 weeks my platelets were very low, I wasn’t aware anything was wrong but I was was given a week off then the dose was lowered to 200mg. This time after 2 weeks I did know something was wrong, I was so weak, my hemoglobin had dropped low and I chose to have a blood transfusion. After a two week break I started on, and remain on, 100 mg. I am grateful for the near 5 years I have had and did not expect to have. I attribute this to Niraparib and the excellent support I continue to receive. I am now 5 years older than when I started this journey, so I don’t really know if my aches and pains (foot and ankle arthritis , higher blood pressure) are drug related or age related (67), but I do know I have a wonderful, enjoyable life. I continue to have a monthly appointment with my oncologist, frequent CT scans, fill out a questionnaire every 3 months and blood work monthly that reassures me that my CA125 score of 8 is a long way from the 6000+ it once was. For those of you who are wondering about the effectiveness of this drug, I feel I am living proof that it has delivered what it promised  “more progression free time”  and might I add an excellent quality of life. 

Deletedbyrequest

@luvlife Thank you so much for reaching out to us. It is so encouraging to hear about your journey. I have only been on niraparib for about 11 weeks. Am also on 100mg and have been worried about the efficacy of the lower dose. This does make me feel better. I am 69 and do have other issues and sometimes wonder about that. But all in all I am active throughout the day; so I suppose that is a good sign.

nadiaC

Hi everyone! As an update, my nurse told me that my oncologist has recommended we do a CT scan in two weeks. So the decision was made for me and I’m happy with it. If there is disease progression then I think it’s better to know sooner. I’ve been off Niraparib since Tuesday. Feeling moderately stronger in terms of energy. @laphilly thank you for the reminder to be optimistic. It’s important and I’m really good at being perky around my six year old. @luvlife that’s really encouraging to know you’re doing well on 100 mg Niraparib. A reason for others on this dose like @Cecile21 to be hopefully. I hope to restart at 100 mg next week if my hemoglobin has gone back up! 

ToughAsTeal

 Good morning all😀. One month since starting the Zejula (300mg).  I have had two nosebleeds in last 10 days that both required trips to emerg. Oncologist knows of the first one, 2nd just happened yesterday so I will call Juravinski in the morning. All bloodwork, and especially platelets are normal. ER doctor yesterday did write a referral to an ENT. Could it be the Zejula? , or dr yesterday said it could be polyps. He did try one vein cauterization, but it was near front of nose. When it did take, closer look was it was further back. Anyways, and unpleasant thing to have a rhino rocket shoved in. Yesterday, after I begged him to try everything else first, it stopped with a dissolvable “wad” (I am sure there is a proper name).  It’s uncomfortable, but at least it seems to have worked.
Other than this, experiencing dry mouth, hot flashes are intensifying, joint pain, and minor fatigue, Has anyone else had the nosebleeds?  Even if not, looking forward to hearing your updates and hope all is well😀

Thanks,
Laura

salare

I'll be starting Zejula this week for maintenance.  I've been prescribed 200 mg/day, with body weight of 110 lbs. I know it's a good idea to listen to your oncologist but reading these messages worries me that the dosage is off. Any updates or experiences with this medicine is helpful. 

ToughAsTeal

Good evening….consider asking your oncology team to clarify reasons for dosage?  Platelet count is also part of prescribed dosage, and other things too.  As much as we are living with ovarian cancer and may share similar experiences, we are also different (sorry, so cliche)… perhaps that’s a good thing, that we aren’t getting stock treatment.  Maybe ask what the potential plans are if dosage is adjusted? (Key word..potential).   Might not change the 200mg but sometimes knowing what might come, for me, can be settling. And yes, I also read the end of the book first and I want the spoil alert for movies!    Lol
update… my nosebleeds had nothing to do with Zejula, and all the other side effects pretty much are gone.  I have 2 notifications set as gentle reminder to take it at 8pm. 
I hope this helps in some way, 

Keep moving forward

Fearless

@salare, ToughAsTeal is right. We are all different and respond differently.  Realy on your oncologist to determine the best course of treatment for you. The experiences of our members only serve to help guide any questions you might want to address with your cancer care team but not guide how your treatment should be administered.  So yes, like ToughAsTeal recommends, arm yourself with the "what if" questions. I too, have always benefited from better knowing what possibilities might be on the horizon should current treatment need to be adjusted.  

Wishing you all the best. :Please continue to reach out. Our community is here to help support you through every step of your journey and wherever we can.
  

salare

Thanks for your insight @ToughAsTeal and @Fearless - Vol Mod. Will keep you posted as this is another big transition in this journey of unknowns

Sarah

babak

ToughAsTeal said:

This is all great info thank you all so much!  My blood work genetic testing came back neg too, also, they did further genetic testing on cancer cells from surgery (full hysterectomy everything gone, cantaloupe tumour, and debulking) and still neg.  I was able to see in my manulife site that it is not covered. I will have some time now to prepare for any other financial options, or see if they also have a compassionate pre-approval. Glad to hear purolator got there in time!  And bloodwork was going to be another question from me so Thankyou for that too.  Is the bloodwork checking the standard pre chemo type levels? CA125? . Fearless, Thankyou as well re working with doctor and team re funding.  It had been mentioned to me at one point that funding emigrated be available and I completely forgot til you wrote it.   (Also dealing right now with sudden loss of my father, estate matters... so much in my brain, and in my heart).   I may have missed my early evening walk in the blue/pink/orange sunset.. but got a solid 2 hour nap.  Always move forward.   

Hello Madam,
I hope you are doing well.
I was wondering, are you sure Manulife doesn't cover Zejula now?
Are you  paying by yourself to buy Zejula?

In advance I appreciate your help.

Fearless

@babak I see that you are new to OVdialogue so, welcome to our community.  

As the site Moderator I noticed you did not complete a profile or introduce yourself so could I ask you to do so in reply to this comment.. Just some simple information on your status....do you have OVC yourself or are you a caregiver for someone else...when was the diagnosis and what treatment has been given or is expected?    Just enough information that we know a bit more about you or who you're representing for context when responding to any of your questions, particularly the one you have asked about Zejula funding.

I'll look forward to hearing more from you....best regards from all of us,

Fearless

jmbarrhaven

I am late to the discussion.  I started taking 200mg of Zejula in mid-September 2021.  So far, I have had to stop it twice due to spike in blood pressure and heart rate.  They just told me that they want me to take a break and then start again at 100mg.  I was interested to hear that someone else was taking 100mg.  They told me it would still help.  

Fearless

Hi @jmbarrhaven
No experience with Zejula myself but plenty of discussions on the topic over the past year or so.  If you haven't already, do try the search bar on the upper right of your screen and type in Zejula or Niraparib and that will pull up whatever exists in our archives that might be helpful.

Though I do understand there can be some anxiety when asked to postpone a treatment or lower a dose. It's happened to me on occasion and that fear those instances can set back recovery are hard to put aside, no matter how you're assured it won't.  It's at those times you really have to draw on your trust in your medical support.  

I am copying Tracy Kolwich @TracyOCC our Regional Director at OCC who I know spent some time this past year collecting the experiences of our community on Zejula. She might be able to add some insight for you.

But do remember as you read the stories of others that we all react and respond differently to treatment.  For some solutions to issues can be dose adjustments, for other issues rests and restarts, and for others complimentary meds to help balance things out.  Your cancer care team will look at all options to ensure you are receiving the best treatment possible. 

Good luck. Keep us posted on your progress and do reach out any time we can be of help or support. We're all rooting for your success.
  

jmbarrhaven

Thank you Fearless.  I have found this forum to be very useful since I have had limited information from my health care team.  The trajectory of my future health is becoming a bit clearer.  Thanks again.