Zejula (Niraparib)

Deletedbyrequest

Just wondering if anyone is on Zejula. It's a PARB inhibitor and although I have no genetic mutations, I will be starting it after they check my blood work and do a CT.

Eleanor2

Hi Cecile. I just started Zejula a week ago. I am also BRCA negative. So far, the only side effect I’m noticing is insomnia. 

Deletedbyrequest

Hi @Eleanor2
I can tell by the time of your post that insomnia has hit you.
 Initially I felt fine but have developed a few side effects.
 I have had a bit of insomnia for many years, but now I am lucky to get 3 straight hours of sleep. Usually I feel so tired after supper that it's all I can do not to fall asleep.. I usually doze off for 30 or 40 minutes while watching TV, then I'm up and cannot sleep until 2 or 3 am.
 Now after 3 weeks I do notice my energy level is lower and at times I do feel very fatigued. Probably because I can't get a full night's sleep. I also have noticed mild nausea periodically but it is not too bad. The documented side effects mention both Diarrhea and Constipation. This last week I find I am verging on constipation. My dose is 200 mg. which I was prescribed as I'm told it goes by weight. I have noticed that some of the ladies start at 300 mg. I'm not sure if it is always prescribed by weight or merely a trial period at the maximum dose and adjusted accordingly.

Fearless

@Cecile21 and others.  Of the two PARP inhibitors in common use right now, Olaparib/Lyparsa is the one that is targeted for BRCA positive patients.  Niraparib/Zejula does not require a genetic mutation to impact its efficacy. 

For those who are experiencing side effects coming and going, be patient.  These PARPs are toxic and your body needs to adjust to them over time. That could mean side effects diminishing as tolerance increases but it could mean increasing as the drug builds up.  Either way, very important to ensure your medical team are kept informed and decisions to increase/decrease/take a break/ stop or other interventions are jointly decided.   

That said, so many of you on this Discussion thread are relatively new to Zejula. It would be wonderful if you would continue to document your experience for others who are interested in understanding the side effects and the effect on your OVC.  

Eleanor2

Thanks, @Fearless. Since I posted, I have had severe insomnia for 4 nights straight. Normally a good sleeper (except when I was on Dexamethasone), since I began Zejula 5 days ago. I don’t even fall asleep for several hours and then only sleep fitfully for 2-3 hours. Has anyone else had insomnia caused by Zejula and, if so, does it persist after the first few weeks? I will speak with my GP tomorrow and oncologist next week, but curious to hear others’ experiences. I’m on 200 mg. and having no other noticeable side effects.

Fearless

@Eleanor2 do let us know what your medical support has to say about the Zejula and your sleep issues.  Sometimes it's so hard to determine the cause of an issue.  So many of our fellow Sisters complain about insomnia; many of whom have never had a PARP...so is it an after effect of chemo, or a side effect of a PARP...or maybe its the chemo but the PARP exacerbates the problem so it's more pronounced.  I know I haven't had a decent night's sleep in the past four years....did it get worse once I was on Olaparib? Can't remember back that far LOL.  Just know I'm glad it's the fall season and lots of new shows to binge on Netflix...and every once and awhile totally crash and have a great night.  Hmmm, maybe it's just getting 'old".  

Deletedbyrequest

After 3 weeks on Zejula, my platelet count dropped from 200 to 130 and now 87. My oncologist has put it on hold until this Friday. Will have a CBC and LFTs this Friday to assess. He said I may have to lower the dose to 100 mg.

SadieC

I just started Zejula on December 2, so today is day 13 on the drug. 
Initially I felt great, with the only side effect being slight headaches.  By day 5 however I started having high blood pressure issues and really bad headaches, and am now monitoring this closely with my cardiologist.  As day 10 arrived the blood pressure issues lowered a bit, but then nausea, low appetite, and fatigue took it's place.  Insomnia too has been crazy from the start.  The last two days have been awful, but today so far isn't bad (so far!).  I'm on 200 mg and have found that drinking a LOT of water seems to help.
Have my first set of bloodwork on Wednesday so we'll see what happens then.  

Deletedbyrequest

I have now started back on at 100 mg. So will have my CBC and LFTs done weekly for a bit. I feel pretty good other than insomnia. My oncologist assures me that the lower dose will still be sufficient for my weight range. I’m not convinced about that but my labs are dictating the dose, 

Beau_TEAL_ful

I started Zejula 300 mg HS in June 2020. Side effects were minimal, nausea lasted about a week and then subsided.  In the second week, I developed extreme heartburn, Pantoprazole 40 mg daily has worked effectively. My blood pressure became high and is being monitored as a precaution. My oncologist checks my blood monthly and so far, so good. He told me in February that within medical discussions, it was decided that a periodic CT should be completed on patients taking Zejula, which I’ll do but I don’t like the anxiety that’s created in awaiting results.

Beau_TEAL_ful

I see that many women have indicated insomnia as a frequent side effect of Zejula. I had insomnia since the early days of being diagnosed with Ovarian Cancer. I tried the Cannabis Clinics but it wasn’t for me. I have been subscribed 1mg 2tabs HS of the synthetic cannabis drug, Nabilone which works quite effectively. I can get about 6 hours of sleep now. 

Beau_TEAL_ful

Prescribed, sorry.

Deletedbyrequest

I am starting to worry since it seems that most of you are on either 200 or 300 mg of niraparib. I am thinking to ask if I can try 200mg one more time. 

Beau_TEAL_ful

I believe the dosage is partially based on weight so try not to worry too much. 

gaylestorm

I have been on Zejula 100mg for the past 5 weeks.  I started taking it at night but found I also had insomnia even with my sleeping pills.  Mornings worked better to reduce the insomnia.  I have had my first set of bloodwork done and all is normal except the low creatinine. I also had problems with high B/P but is controlled by medication.  All in all, the fatique is getting better and so is the shortness of breath.  Maybe if creatinine goes up I'll be able to increase dosage. Regardless, I feel very positive that I'm doing everything possible to delay reoccurrence.

Rosebud65

I started Zejula in late July 2020. I didn't have any major side effects, but I did experience shortness of breath and joint pain. I was given an initial CT scan in mid-July 2020, followed by scans every 3 months. The July scan gave precise measurements of the size of my tumour (I have always appeared to have only one tumour). On each subsequent CT report, the radiologist would write that my tumour seemed to be similar in size to the mid-July 2020 report, but no measurements were given.

Unfortunately, I started to experience bladder problems in January 2021, and my gynecological oncologist ordered an MRI. This scan gave measurements, which could then be compared to the CT scan of July 2020. My tumour had doubled in size and had invaded my bladder. I was very disappointed. I will never know if the Zejula stabilized my tumour for a while and then stopped working, or whether it didn't work at all. The cancer in my bladder is very painful. I now take a lot of pain medication every day, in consultation with a great doctor from my local Hospice. I have to pee a ridiculous number of times, day and night, which keeps me near a toilet and prevents me from walking far or getting a good night’s sleep. 

There is, however, a silver lining to this story. My gynecological oncologist started to consider whether I might be a candidate for surgery. Apparently I'm a very unusual case. Surgery is rarely performed on women with recurrent ovarian cancer because it won’t be a cure, there is almost never just a single tumour (sometimes there’s a bunch of tiny ones that don’t show up on a scan, as well as the one that can be seen), there may be a lot of scar tissue from the original hysterectomy, and the surgery is really hard on the patient, who may be frail. Luckily, I am relatively healthy, with no underlying medical conditions, and a laparoscopy I had done on March 01, 2021 showed that there was very little scar tissue in my pelvis, and the tumour is a single mass on my bowel, on my vagina, and in my bladder.

I’m having a major surgery on April 14. Three surgeons will work on me. One will remove my bladder and give me a urostomy. (Since I already have an ileostomy, the urostomy isn’t as frightening or as life changing as it might be otherwise.) Another will remove the diseased part of my colon, and the third will remove the cancer from my vagina. The recovery time will vary depending on whether there are any complications, like an infection. I will be in the hospital in Oshawa for a minimum of four or five days, and then there will be several weeks at home with restricted activities.

I wish I could say that there was some possibility that I would be cured, but the doctor assures me that there isn’t. However, the reality of being cancer free, pain free, and symptom free for months (could I hope for a year or two?) is really exciting. I believe I will have to do some chemo after the operation, as a preventative measure, but then I hope to lead a normal life for however long my remission lasts.

I wish the Zejula had worked, but in the end, I do have hope for a normal life for a while.

Deletedbyrequest

@Rosebud65 I just want to say that you are one gutsy lady. I can tell by your comments that you look at life as half full not half empty. I admire your determination and will keep you in my prayers. I have a feeling that you will do very well, All the best. 

Fearless

@Rosebud65 your resilience and positive attitude are so inspiring.  But I do wish I could give you a huge hug for all you've been through.  Let's hope for successful surgery and not give up hope for other interventions that will extend your life and with quality. I too have a form of cancer that can never be cured. I'm not in my 5th year of survival thanks to two years on a clinical trial...and now a very positive response to chemo.  There is so much new happening in both research and trials and new treatments to market just in the past two or three years that we are truly living longer and better lives now.  Living with the knowledge that recurrence is not an if but a when can be daunting, but I like to think about my oncologist's pocket always being full of some new magic and so far she hasn't failed me.  I wish the same for you.  
If you haven't already, I'd encourage you to register for the Speaker Series session tomorrow (Wednesday) at 7pm EST.  You may find it encouraging and helpful.  You can find the registration link on the discussion topic I posted as an announcement.  
And love to have you join us at any of our live chat sessions on Thursdays at 1pm EST.  We laugh, we cry, we celebrate, we commiserate...and often just talk about the weather and any nonsense that comes into our heads.  You can join the live chat by signing in to OVdialogue and then clicking on the Discussion topic titled TEAL THURSDAY......
In the meantime, my thoughts will be with you......

gaylestorm

I am also on Zejula.  I started with taking 100 mg a day with the intentions to increase to 200mg.  I had problems with high blood pressure and increased heart rate, which took some time to sort out with medication.  My oncologist has determined due to this and fatigue, that this is the appropriate dosage  for me. When I first started taking Zejula I did experience insomnia as well as being mildly nauseated.  While I am no longer nauseated, I do however have mild insomnia even thou I'm taking sleeping pills.  Taking this medication gives me hope.  I know that I'm doing everything I can to stay healthy.  
A quote that I try to remember each day,  "I am filled with joy, for being alive, today"

Eleanor2

Since my last post, I’ve been struggling a bit with Zejula, trying to see if I can tolerate 200 mg. I have recently decided, in consultation with my oncologist, to remain on 100mg, at least for the time being. On 200mg, I had severe insomnia, developed a constant headache and sore throat, worsening fatigue, anxiety and difficulty taking a deep breath at times. While my blood pressure is raised by the drug, this has been less of a concern, as my normal BP is low. I continue to experience some symptoms on 100mg, e.g., palpitations, higher heart rate, constipation, low-grade bladder infection, but generally I have more energy and feel this dose is manageable for me. My oncologist has agreed. A CT scan in January was clear. Like others struggling with this, I am keeping my fingers crossed and hope this dosage will give me some protection.

HoldingOn

@Rosebud65
I hope your surgery went well and you’re at home now recovering. Let us know how you are. ❤️

Readersmaven

@Rosebud65 ....I wasn't part of this thread, but was just reading through your story and ad others have said, you're spirit is amazing and inspiring. I hope you're gone and recovering from your surgery. All the best! 

LUCY_BC

Well, I’ve been given the news that I’ll be on Niraparib (Zujula) as soon as I’m approved, of which they see no problem.  I’m very concerned about reactions, since I did have reactions during regular chemo.  After each chemo treatment I did have a racing heart, which subsided after resting, as well as flushed face & constipation, low blood counts, etc.  I know I have to give it a shot, but there’s a part of me that just wants to live now, because I feel SO good.  My Oncologist recommends that “I should go on it”, so I to respect her knowledge & expertise.  I’d love to here more positive experiences on this drug, to take away the anxiety of this decision.
thx so much
Lucy

Fearless

Hi @LUCY_BC so glad to hear you've come out of chemo feeling so well.  I know the chemo itself can be a rough go for many.  So far I've managed fairly easily and I'm currently on my third round in year six of treatment for recurrent stage 3C high grade serous.  Just goes to show we all respond and react differently to treatments, including now the maintenance drugs like Zejula.  

Lots of discussion here on that particular treatment.  Go to the search bar and type in Zejula and also try it's clinical name Niraparib and you can pull up all references to it.  Be forewarned though that there is a tendency to reach out when members of our community experiencing issues and less so when things are going well.  That said there was a member in the last week who gave us a wonderful update on her experience with Zejula over the past year...all positive.  I just wish I could remember who.  

 I have not used the drug myself. It's not appropriate for me unfortunately.  But of the women I've talked to about starting the drug I usually offer this advice. First of all regardless of your experience with treatment in past, it doesn't define how you will react to the Zejula.  If your doctor, knowing your history and any current medical issues, feels the drug is suitable and not a danger I would rely on that expertise.  Many of the side effects that some experience initially can be easily mitigated by adjustments to the dose. And finally, you are at choice to stop the drug at any time if side effects are or become intolerable.  So do consider those and as you read other's stories about their experiences, use that information to help inform any further questions you may have of your oncologist so that you are making a well informed decision.

Good  luck and do keep us posted.  Hoping it all works out successfully, regardless of your final decision. 
  

SadieC

SadieC said:

I just started Zejula on December 2, so today is day 13 on the drug. 
Initially I felt great, with the only side effect being slight headaches.  By day 5 however I started having high blood pressure issues and really bad headaches, and am now monitoring this closely with my cardiologist.  As day 10 arrived the blood pressure issues lowered a bit, but then nausea, low appetite, and fatigue took it's place.  Insomnia too has been crazy from the start.  The last two days have been awful, but today so far isn't bad (so far!).  I'm on 200 mg and have found that drinking a LOT of water seems to help.
Have my first set of bloodwork on Wednesday so we'll see what happens then.  

Update!!  Here it is over a year since I last posted.
From the date I last posted (December 2020) my oncologist had me go on a "drug holiday" where I stopped Zejula for 3 weeks.  After that, in January, my dose was changed to 100 mg once a day.

Here I am a year later, with Ca 125 monthly in the range from 9-11, and still in remission.

  Were there continued side effects? 
Yes, higher blood pressure and occasional heart palpitations.  All easily handled with a very low dose of metoprolol first thing in the morning.

  I feel great!  Symptoms often work themself out within a month or two, and as a patient, you continue to be carefully monitored by your cancer team with monthly bloodwork.
It is scary at the beginning though, especially coming right out of treatment. 

 But there is light at the end of the tunnel.  It has been over two years since my last chemo, and pray each night that I stay that way!

Eileen

Hi My name is Eileen and I will be starting Zejula mext week. My oncologist will be starting me off at 200 mg daily. I myself do not have the gene mutations. I was diagnosed with stage 3c ovarian cancer in Feb 2021. Had 3 rounds of chemo then debulking surgery and 3 more rounds of chemo. Due to my blood levels i had a few delays and lowered dose.I had recent t that showed i have some reoccuring nodules in my lower left periodic gutter. Measuring 6mm or less. I will be starting Zejula in hopes to stabilize them. My oncologist did mention for me to start calcium and vitamin d right away. She also recommended that i take those anti nausea pills they give u for chemo. 3 times daily, half hr before meals. I am a little worried about side effects. I too been suffering from insomnia only the last few weeks. I am also currently on blood thinners as i developed a sm blood clot in my lung which has now resolved. I am also on blood pressure meds that my oncologist said might have to be upped. Thankyou ladies for sharing about your experience with zejula. I am very hopeful that i do as well.

Eileen

Well update on my last post, its now 3 weeks for me on 200mg of Zejula. My platelet count at the start of Zejula was 218.  I have had CBC blood work done once a week where I noticed my platelets did drop to 159 by 2 week and now today i again after 3 weeks in my platelets is now 72. After speaking with my team. My oncologist has recommended a week break and will then i will be having my full blood count checked next week to see where we are at and to see if a dose deduction is needed. Other than that my side effects were very little the first week. Minor headache, tiny bit nausea. My blood pressure has gone up a bit. Had my blood pressure meds adjusted a bit. So we will see how that goes. Still suffering from insomnia,  last 3 days more so. A bit fatigue
 From not getting much sleep i believe.

Deletedbyrequest

 Hi Eileen. I continue to be on 100 mg of Zejula since Sept of 2020. I too am Stage 3C. As of today, no side effects and CA125 was 11. Just want to share. It's always encouraging.

Eileen

Hi @Cecile21
Thank-you for letting me know. With me my CA125 levels were at 97.  1 week prior to starting Zejula. My Dec 15 ct result showed some small persistent nodules up to 6mm in my pericolic gutter. My biggest fear is the 100mg wont be enough to keep them at bay.
But i will go over these questions with my oncologist when i see her on the 10th. 
I really hoped when i was done chemo after my debulking that no signs of cancer would be present. But with my delays in my last 2 chemo's my ca125 levels went up. And of course their again my ct didnt say how many small nodules. So i know its different for everyone. Here i thought i was doing so well. My other cbc levels are really good. Hardly any change. Today though i feel really crappy headache etc spent most of today on couch resting. But yes side effects were like mmm hardly nothing. But yes your reply is incouraging and i will keep positive. Thankyou.

Deletedbyrequest

Hello @Eileen
Your comment about the pericolic gutter reminded me that my CT initially had queried some concern regarding that. 
However, my last CT in Sept 2021 did not mention anything in that regard after 12 months on 100 mg of Zejula.
And to note that I too tried 200 mg and my platelet count dropped ; so my oncologist assured me that 100 mg was more appropriate and a sufficient level for me. Also I do not have the gene mutations. 

Eileen

Hi @Cecile21
Oh wow that's good to know. I don't have the gene mutation either. Now if i can only sleep this insomnia is pretty bad most nights. Tried melatonin stopped working for me. I even took one of those night time benedryl to help knock me out ha yep nope. I go to bed around 10 at night only to toss and turn each night till like 4am.  Just seems like after finishing chemo. But i only really noticed it after my ct last dec that it got really bad.