Zejula (Niraparib)

Eleanor2

hi all,
i was on Zejula, following chemo and surgery as I am also BRCA negative. I had a hard time with side effects - terrible insomnia, headache, rapid pulse, slightly raised BP. etc. - so dosage was reduced to 100mg, which I tolerated. Last July my oncologist received results of tumour testing for a sporadic mutation of the BRCA gene, which was positive. I was consequently switched to Lynparza, 600mg. Apart from slight nausea at the beginning, I am tolerating a full dose of Lynparza much better than I did the Zejula. I had to repeat my request for testing of the tumour tissue for a sporadic mutation before it was done and am glad I persisted. It’s worth doing!

Eileen

My apointment tomorrow cannot come soon enough. My CA125 levels are now up to 196. Was at 94, 1 week prior to starting Zejula 4 weeks ago. They haven't been that high since April of ladt yr. I been off Zejula for 1 week and some of my levels are dropped even lower like wbc now at 3.6 from 4.8 last week. Not sure if Zejula is working for me. Only been on it for 3 week. And 1 week off as of today.  Been experiencing some fatigue a bit of indigestion nausua. Some left lower pain.  Going to see if another ct is warranted. Some of my other levels have either dropped or went up. Well we will see what happens when I see my oncologist tomorrow afternoon.

Deletedbyrequest

Hi @Eileen I’m reading this later today. Hope that you get some answers tomorrow and that things are taken care of. I’ll be thinking about you. We are all in the same boat so to speak. 

Eileen

Thank you @Cecile21. I will keep everyone updated. I will try to join in the Thursday tea time.

Eileen

Well just had my meeting with my oncologist and she will be ordering a scan. She said she did notice my ca125 have doubled. We went over my blood work. She doesnt want to give up on zejula just yet. I will be starting 100mg of zejula daily. I mentioned whats the 100mg going to do if the 200mg didnt help. My oncologist then did mention sometimes the ca125 levels do elevate before they level off. Being that my ca125 levels was  elevated 1 week prior to me starting zejula and that being off zejula for 1 week.  I tried to see if I can have. Ca125 level test done weekly like my blood work that we are continuing to do. To see how much they are going up weekly. As of right now i estimate my ca125 levels after 5 weeks from my last ca125 test are going up by 20.5 weekly. She said no the test is too expensive and that they get their hands slapped so to speak with doing it monthly. She said the next 4 weeks will tell us what we need to know. If it isn't Working then i would be classified as platinum resistant and would have to go on another chemo like caboplatin and avastin. We did go over some of the side effects. I did mention i was doing really well on my last chemo regiment carboplatin and abraxane. My oncologist mentioned yes u did. I did say to her that i  would kinda of like or hope to go back on it or try it again. She said when was your last chemo. I said end of nov. Mmm well if we can get u past the 4 month mark we could probably try it again but it is too soon right now. My oncologist mentioned. So this is where i am at right now.

Deletedbyrequest

Hi @Eileen , It sounds like you have a plan going forward and I hope the wait for your next CA125 finds your result levelling off closer to the reference range. I certainly sympathize with you about not having the CA125 done weekly. I don’t always agree or sometimes question what my oncologist decides for me but have learned during the past year that I need to trust him and that works well for my peace of mind. I will be waiting for your next update. Take care. 

Fearless

@Eileen I can sure appreciate your anxiety.  We've all been through that...it's almost a constant every time we feel something abnormal or a test result seems off. But it sounds like you have a good oncologist who has a plan and already looking at differing options pending the outcome of the next few weeks.  Try to have patience....I know that's easy to say and harder to do though. But what seems like it's taking ages to move things forward is really quite fast in comparison what I've seen. As for the CA, it's not a reliable test. Any type of abdominal inflamation can set it off, not just a  tumor, nor is the score in direct correlation to the size of a tumor if there is one.  My CA back at the end of October was 9500, yet both of the nodules they measure for me were still in the millimeter size.

It sounds like you have faith in your oncologist so, like Cecile21 said above, place your trust in her.    

Eileen

Thank you @Fearless - Vol Mod for your strength and encouraging words. Yes i do have faith in my oncologist and trust her completely. She has been upfront with me from day 1. Yes i do have a few nodules they told me measuring up to 4mm and another one below those measuring 6mm. That was back in dec 16. 3 weeks after my last chemo. But of course the radiologist never tells you how many. 

352Ruth

Hi.....just got the go ahead for zejula treatment for my 3c serous ovarian cancer, had the debulking surgery at the end of January followed by 6 rounds of chemo; my oncologist team expressed some concerns about my liver functions but it was agreed we could move forward with this treatment; , takes a few weeks and maybe more to get approval, will keep everyone posted on my progress. reading  about the stories  of others on similar journeys makes me feel less alone with what i am facing. 352Ruth

Deletedbyrequest

Hello@352Ruth I too am 3C serous ovarian 
have been on Zejula since Oct 2020
my CA 125 has not gone over 14 since then 
initially tried 200 mg but went down to 100 due to platelet dropping too low  Currently trying alternating 100 one day 200 the next  . My liver enzymes have never really been affected. The only other side effect for me has been dealing with constipation. Other than that it’s not been bad. I can say though Zejula does require dosing by weight. My oncologist is pretty adamant on that. So here I am right in between the two doses. Hoping that alternating daily will be just right on target. Wishing you well. 

Deletedbyrequest

I am just wondering how long everyone has been on Zejula? For me it's  22 months

annie22

Cecile21 said:

I am just wondering how long everyone has been on Zejula? For me it's  22 months

Hi @Cecile21
Are you still on zejula ?
Annie  

Deletedbyrequest

@annie22 No, as soon as I had to go back on chemo, they took me off. My understanding is that I cannot use it again. 

annie22

Hi @Cecile21
I thank you for your answer but I'm so sorry for your recurrence. I hope  your traitement isn't too hard.

Strongwoman

@annie22
  Have you had to go on Zejula recently or have a question about it?  Where are you in your treatment?

Strongwoman

@352Ruth
  Good Morning.  Checking in to see how you are doing with the treatment you started in August.  How are things now?

Fearless

Just a reminder to all that the PARPs (mainly Olaparib and Zejula) don't work for everyone and when they do they don't necessarily work to stabilize you forever.  But once progression begins again the PARPs become useless to you and that's why they won't let you begin a course again. But at least if it did work, whatever time it was effective was borrowed time you gained before the need to go into chemical treatment or radiation or surgery was necessary. Hopefully with all the new research and trials underway they will be new options to consider for all of us.

annie22

Strongwoman said:

@annie22
  Have you had to go on Zejula recently or have a question about it?  Where are you in your treatment?

@Strongwoman
I've a.HGSOC since septembre 2020. I'm stage 4 wich is scaring for me. I began my treatments with 6 carbo taxol then the surgery with HIPEC
A lot of infections (sepsis...) after my surgery. It was very hard times for me to finish my chemos post surgery. Then I began Avastin every 3 weeks  til May 22 when the scan showed a recurrence. I'm now on carbo caelyx and my gyneco onco wants me to take zejula after this treatment but I'm quite afraid with it. It seems like very few women can live a normal life while taking Zejula. I want quality of life.
I know that Zejula is harder than Olaparib. I'm just scared... 

Strongwoman

@annie22
  I bet you are and rightfully so. Some of us face these decisions and while we sit in the "unknown" it is hard and scary. I am currently or will be soon making a decision similar to yours.  I have some questions to ask first but have postponed that until the New Year. I have come off of a trial drug at a full dose and they want to re-challenge it in the New Year at a lower dose.  I don't know what my decision will be and I, like you, want quality of life.
I teamed up with a Palliative Doctor this year after being hospitalized for a partial bowel obstruction.  It has helped.  I bounce a lot of my thinking on treatment, what I do next etc off of her.  She once said to me when I was fence sitting on a decision, "You sound like you are unsure.  You will know what to do as you won't have any hesitation when you have reached your decision so for now, I feel it is safe to not decide yet."  She is right.  Sometimes, I have to "sit in it" for a bit while I think about what is being suggested, what that might look like, how I will feel and what that does or doesn't look like for my family.  I have very strong convictions of what I want them to see or watch me go through or remember about me regarding treatment and the side effects of it.  It is my understanding that every chemo treatment you receive (even with breaks) that the body remembers and it is slightly more difficult to get through due to the side effects the consecutive times.  So, I feel that how you described yourself above fits that comment.
So, perhaps, sit with it and postpone it to the New Year.  Speak with your team and see if that is okay.  I just posted about feelings and holidays in a separate post today which will cover a lot. 
I don't do well with fast decisions that will affect my body.  I have been through enough and now I make the decisions on what type of "quality of life" I want and what that means and looks like for me.  My own vision may not be yours.  Perhaps writing down pros and cons would help.  Or.....write down why you are hesitant and what side effects you are most fearful of and ask your team.  Ask best case and worst case scenarios.  See if you might find an in between that you are comfortable with .  Whatever it is, you will find your answer.  It won't be easy and you will go through a lot of feelings about it but in the end you will decide.  Decisions are very hard on us but we are courageous in making them.

Strongwoman

@annie22
  I will also add that for this next appt with the Med Oncologist, I asked my neighbour/friend to take me.  I know I can say anything to her and this next decision is a big one for me.  I want to be able to be free to ask the hard questions I will be asking without worrying about what my spouse or family member's faces look like or how they react when I ask what I need to.  I will sort that out later as they are having difficulty with processing all of it as they go through their own "grief" period.  So, if you have someone like that or you are more comfortable with family, it is a thought for your discussions with your team. 

Fearless

@annie22 fear is a natural reaction to facing the unknown so your feelings about a Zejula regimen are quite legitimate.  Personally, over the past six years, I've made it a ipoint to try anything recommended with the understanding that I can bow out at any time should I feel overwhelmed with side effects.  We have lots of stories here about the use of the drug and unfortunately we often hear more from those experiencing challenges with medications than from those for who it's been smooth sailing.  And, of course, we all respond in our own unique way to any treatments.  Were I you I would likely try the drug for a month, maybe 2. If side effects are not tolerable then you're at choice to stop.  But how wonderful if you take the chance and it's effective and tolerable. 

annie22

@Strongwoman @Fearless_Moderator
Thank you for your answers. The best for me would be to test it and stop it if l don't have quality

annie22

Quality of life sorry

Strongwoman

@annie22
  Wonderful. Sounds like you have thought about it and have a plan. I will keep my fingers crossed for you that you may have minimal to no side effects. I wish you the quality of life you foresee for yourself as well.

Jam

It is reassuring to read that other women are experiencing nausea, insomnia, high BP and rapid heart rate.  I just called my oncologist's nurse to learn how I can introduce exercise into my routine without my heart rate racing.  I don't take nausea pills because they cause constipation, another challenge which I manage with Senokot and diet.  I naively thought I would return to some semblance of a normal life after surgery, chemo and my current remission.  

Strongwoman

@Jam
  It is wonderful to have a community to be able to read past posts and current ones to determine whether what you are experiencing is common or not.  To be able to read alternatives others have chosen and had work is helpful as well.
I would not say you were 'naive' in hoping your recovery would return to 'normal' but I would like to think you were hopeful.  I equivalate most of this to pregnancies.  If it took 'X' long to get you there then expect it will take at least 'X' or longer to recover.  Our bodies are amazing machines but I know I don't mine enough credit at times for healing as fast as I would like it to. 
  As an aside, I have used a CBD for nausea in a vape pen form before and it helped immensely and immediately.  I have to be careful like you about meds and constipation.  This does not cause that at all.  Talk to your team about it and see what happens.  No harm in asking. 
  I, as well am currently having BP issues but I believe mine is coming from the reduced kidney function and putting more stress on the heart.  I think we may have to increase my dosage but will see in the coming days if that rings true or not. 
  Join us today at 1pm if you can for our chat.  I find them engaging.
Take care 

powderpuff

I’m currently in the position of deciding if I should take zejula. My oncologist has recommended 300mg daily. I also suffer from bipolar II and sleep is vital to my mental health. In the comments where a lot of women have said insomnia is bad I’m worried. Has anyone been in this position?  

Strongwoman

@powderpuff

  I, personally, can't answer about the Zejula as I have not been on it. To clarify when you ask "Has anyone else been in this position?"

Is that in reference to insomnia only or the situation as a whole?

  I was having difficulty with sleep and was prescribed a sleeping aide and am currently still on it. If you are concerned about this, it would be best to discuss it with your Oncologist due to your diagnosis and other medications you are on. They may suggest trying alternatives first before prescribing anything or may do it preemptively. They (Oncologist) would weigh the pros and cons and your concerns. They may also wait to see how you do on the Zejula first to make sure there are no side effects from it before adding in another drug at the same time and thus muddying the waters when it comes to possible side effects you may develop from either drug.

 Does that help if the question was directed at the insomnia solely?

powderpuff

@Strongwoman

I was writing about the whole situation. I can clarify. If I don’t get the right amount of sleep my mood can dip into a depression which is dangerous. My oncologist said there is no negative drug interactions with what I’m currently taking and zejula. I’m concerned about reading that insomnia seems quite a common side effect with zejula so I don’t want to risk destabilizing my mood due to side effects from zejula. Thanks for your comments. 

Strongwoman

@powderpuff

  Thank you for feeling safe enough to share more. It is very understandable that it would be a big concern. By your post, it sounds like you have a good relationship with your Oncologist and I feel your concerns will be addressed. If you would like to share your outcome in the future, I would be interested in reading an update.
 Perhaps some of the other ladies may post some of their experiences with the insomnia and Zejula soon.

 Wishing you the best in the coming weeks.