Zejula

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.

Comments

  • 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. 
  • 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.
  • @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.  
  • 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.
  • @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".  
  • 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.
  • 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.  
  • 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, 
  • 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.
  • 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. 
  • Prescribed, sorry.
  • 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. 
  • I believe the dosage is partially based on weight so try not to worry too much. 
  • 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.
  • Rosebud65Rosebud65
    edited March 21
    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.
  • @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. 
  • @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...... <3

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


  • @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! 
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