Looking for Zejula users

Elli

Hi,
I have been on Zejula treatment since August 2021, no severe side effects. Regarding health insurance coverage, I would like to say, that, considering the cost of this treatment -$7,967 US for 30 100mg pills, I doubt any health insurance program will cover, or they say it is covered, however you have a maximum drug coverage amount per year, usually between $1,500.00 and $5,000.00. I'll let you do the math...
Until the province healthcare program will cover, the pharmaceutical company will take the cost.

Wishing you all the best! 

SadieC

SadieC said:

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) 

Here I am, a year later...still on Naraparib/Zejula 100 mg each morning, and still having a CA125 score of 9-11 monthly. (26 months of remission since chemo)  Really no side effects to speak of, though I did find that I was way more sun sensitive than I've ever been with our holiday down to Palm Desert.  I continue to be on Apo-Metoprolol for blood pressure and heart palpitation issues I had at the beginning, but just at a very low dose. 
All good so far, and so thankful that I have been able to have this opportunity!

ToughAsTeal

what a wonderful and encouraging Happy New Year update! I think we all celebrate with you! 

Fearless

@SadieC so thoughtful of you to share your update. It's truly encouraging for those starting out on Zejula.  I know we receive many questions on the subject.  Please continue to share your progress but in the meantime, we're all doing the happy dance for this latest milestone on your recovery.
  

LUCY_BC

I’ve been on Zejula for a month now. Moderate and manageable side effects until this past weekend.  I had full body chills (body on fire), pulse = 106 (@ resting stage), hot red cheeks & nose (which I’ve had before during IV chemo), temp. rising. My bloodwork yesterday showed platelets cont. to lower (expected) but my kidney tests (creatinine + GFR) were haywire. The last time I had my kidney blood tests done, were Dec. 31st (prior to starting Zejula) and all okay, just like its always been.  I have an appt. with my Oncologist today, so we’ll see what the plan is. I take 200mg because of low platelets.

Fearless

@LUCY_BC I'm sorry to hear how tough the side effects of the Zejula are.  Hopefully your oncologist can come up with some solutions. But as for the Creatinine and GFR scores, hydration is critical at all times and can easily become problematic without realizing you're in trouble.  I had a similar situation, not drug related, a couple of months ago where my creatinine level shot up so high my kidney function dropped about 75% and apparently I was in danger of kidngy failure. It' took two days in the hospital on saline 24/7 to get the level to where it should be.  Had some great conversations with the nephrologist they assigned to me for me to realize I needed to hydrate far more than I had been.  So far so good and all is back to normal but I"m now very conscious of how much fluid intake I get each day.  

LUCY_BC

Thanks Fearless; I drink about 5 x 15oz. glasses of water a day (min.). I have no problem with my kidney function, so the blood results were quite a surprise.  My Oncologist has stopped the drug intake for a week and I’ll retest my blood next Monday. 

Hobnob

Hello, I'll be starting Zejula this week and am very nervous after reading about the side effects. Does anyone have any helpful suggestions i.e. what time of day to take it? I'll be starting on the 300mg dose. 
I'm already on meds for high blood pressure and my blood pressure really spiked after chemo. That lasted for several weeks. 
Thanks. 

Hobnob

@luvlife Thank you for your post. I'm starting Zejula this week and am nervous. Your post was so encouraging. 

Hobnob

@ToughAsTeal I'm starting Zejula this week and am nervous! Your posts were so helpful. How are you doing now? It sounds like the side effects declined over time?

ToughAsTeal

@Hobnob Good morning😀 I tolerated Zejula very well.  Symptoms of recurrence started to show up in July 2021 (my last chemo was Nov 2020…started the Zejula Dec 31 2020). Some background: I was not considered platinum sensitive, so went back to 3 rounds paclitaxol/carboplatin on Aug 2021. In hindsight, I likely was, as my 3 month scan showed the chemo had no effect. I was switched to Caelyx/Avastin. My scan in January 2022 showed the tumours had decreased in size. I just finished another 3 months and am having scan today. So crossing my fingers! I think it’s important to note that at initial diagnosis 2 years ago I was stage IV, had a very successful surgery with complete removal of large tumor and all visible cancer. It was a complete hysterectomy of all lady parts and debulking. Dr explained microscopic cancer and that likely I would recurr. I credit the Zejula for slowing down the recurrence. And am hoping that Zejula may be another option for me at some point! 

Hobnob

@ToughAsTeal Your comments are so helpful, thanks. Glad to hear the Zejula was tolerable and that the tumours decreased in size for your Jan scan. I hope today's scan has positive news for you. I also had the total abdominal hysterectomy and debulking in Sept 2021 and finished 6 rounds of chemo in March. I have Stage 3 high grade serous carcinoma.

Fearless

Hi @Hobnob 
So glad to see you've been using our search function. There has been a lot of discussion and shared stories on the subject of Zejula, especially the past year, so hope you found it helpful.

I was not on Zejula myself. Although I was on a very successful clinical trial for Olaprib, it's sister PARP inhibitor, that lasted about 2 years.  Those are miracle drugs when they work for us.  That said, from my own experience with PARPs and reading the stories on the subject, if I can offer a piece of advice.....side effects that cause significant discomfort can almost always be immediately mitigated by lowering your dose.  So do make sure you let your cancer care team know if you do experience any side effects that aren't easily tolerable.  A minor drop in dose can often be a great solution without affecting the efficacy of the treatment.

Good luck and let us know how you're managing or if you need any support from our community.  Big hugs for success, 
  

Hobnob

@Fearless - Vol Mod
Thank you. I will let you know how I get on. 

suesage

Hi … I am taking Zejula. I started on 200mg on Jan. 7 .I had to stop on March 4 because of low platelets. After a  4 week break I started back on 100 mg. dose of Zejula. My blood work has been fine but now have developed a bladder infection….I believe this can be a side affect. I am waiting to hear from my oncologist what the next step will be.
Has anyone else had this experience?

Keepcalmandbreath

Hello ladies. I was on Zejula for about 7 months after 2nd round of chemo. I was on 100 mg dose as I am petite. I did not have serious side effects apart from occasional high blood pressure (which I did not feel unless I measured it). Yes, my white blood cells were low but good enough to continue on 100 mg doze. At about 6 month mark, my bowel movements slowed down which I contribute to this drug. 

I’ve read a lot about this drug before taking it and a bladder infection was mentioned among side effects. I stopped it as I had 3rd reoccurrence and am currently going through a 3rd round of chemo. 

Hobnob

Well I've been on 300 mg Zejula for one week now and the side effects were (everyday, most of the day) extreme drowsiness, dizziness and some insomnia. I started with taking it at bedtime, but the pharmacy recommended I move it to the morning, so I gradually did that (still drowsy/dizzy). I have not driven apart from a couple very short, local trips. I can't function like this and it's unsafe. Yesterday my oncologist said to not take it for the next four days, then resume, and when I see her next week, she might have to lower the dose. 

suesage

Hi Hobnob…..I was taken off Zejula when my platelets went too low. I was on 200 mg. When my platelets went back up I was put back on Zejula. My oncologist gave me the choice of going back on to 200mg, to see if my reaction was different or to try 100 mg. I decided to go on 100 mg. I have taken this dose for 4 weeks now and have had no side affects. I was going for bloodwork every week, now I only need to go once a month.
I take it at night before bed because I was told it might make me nauseous during the day but I haven’t experienced this. 

Deletedbyrequest

I have been on Zejula since Oct 2020. Started at 200mg but due to a platelet count below 100, I was switched to 100mg. I have been in remission for 2 years so I asked my oncologist if I could give the 200mg dose another try. I just feel that I need to take advantage of every tool in the box. My CA125 has been pretty consistently in the reference range but I know that odds are that will not last.  I didn't have any problems with 100mg so I don't expect (hopefully) to have major side effects with the dose increase. I now will go for labs weekly for a while and see what happens. It has been so helpful to read what everyone has commented re the dose. .

Hobnob

Hi - I thought it's time for a Zejula update. I was on 300 mg for 5 weeks and though the drowsiness/dizziness lessened, I still felt a lot of fatigue. So after 5 weeks the oncologist lowered it to 200 mg. I've done much better on that - not as fatigued, and more alert. 

suesage

My Zejula update…..I am continuing to do well on 100mg. No more bladder infection, my energy levels are up, much less fatigue and my platelets remain above 100. I also only go for blood work once a month now so much nicer then once a week. My oncologist/gynaecologist  checks in with me once a month. 

The only hiccup I have experienced….I developed a blood clot in my lung so am now on blood thinners and will be reassessed in 6 months. I have been told this has nothing to do with Zejula but because of ovarian cancer I am more susceptible.

The plan now is to continue as I have been. My CA 125 will be checked every 3 months. I will not have a ctscan unless I start having symptoms. I have been having my appointments with my oncologist/gynaecologist  over the phone. I had my last appt on Friday June 24 and have agreed the next one will be in person which I find reassuring. The phone appts have gone well and are convenient because it is a 2+ hour drive. However it is nice to have the face to face.
Hobnob glad to hear you are tolerating the 200mg…..it is so nice to not feel so fatigued

Hobnob

@suesage That's good to hear you are doing fine too on Zejula, but concerning about the blood clot. I didn't know that could happen. I hope it will go away. 
I was checked every week by a visiting nurse (and some phone calls from the oncologist), but now it's shifted to 1x monthly. Next week I will meet with my oncologist, and I understand that's a monthly visit. 

Fearless

@Hobnob the blood clot @suesage referred to is actually very common in OVC and not necessarily linked to the Zejula it's self.  Many experience clots very early on their journey. I was almost five years out before I developed one in my lung. In most cases they just show up during routine scans and they act very quickly to resolve them and prevent further occurrence, usually through the use of blood thinners.  If you have concerns or would just like to be better informed on the subject,  have that on your list to discuss with your oncologist when you meet next.  

hope2022

Has anyone experienced a loss of appetite and a little stomach upset when taking Zejula ? 

Hobnob

@hope2022 I am on Zejula. I am a little less hungry than before starting Zejula, but still eating enough (probably more than enough some days!). I've been fortunate not to have stomach upset, but have had mild heartburn sometimes. The main side effects for me have been fatigue and drowsiness, and I think it does affect my sleep. 

Hobnob

@hope2022 I forgot to say that from what I read, common side effects can be loss of appetite and indigestion and heartburn. 

hope2022

@Hobnob thank you for letting me know about your side effects. I feel it is affecting my sleep a bit too. I've started to take it in the morning now, which seems have helped. Sometimes it's hard to know what time of day is best.