Has anybody took Zejula Chemo pills for maintenance.

Ojlindsey
Ojlindsey Member Posts: 1
edited April 16 in Ovarian Cancer #1

Has any one taken this for maintenance from recurrence of Ovarian Cancer?  If so can you tell me about your side effects? I am having back pain, joint pain in my hip and knee, and nausea. Just wondering is this anything to be concerned about...my doctor says that unfortunately that is the side effects and that’s way he gave pin pills...but I hate taking so many pills I was wanting to know what you have done to help...Thanks

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Comments

  • Beverly1951
    Beverly1951 Member Posts: 1
    edited January 2020 #2
    Zejula

    i have been on Zejula since Aug 2018. 200 mg. Aside from some sleep disturbance, I haven't had any bad side effects. Although for several months I have a stuffy head, sneezing, and constantly blowing my nose. I'm wondering it it's the Zejula. The package insert says some people experience this. Also have elevated blood pressure. 

  • Lana67
    Lana67 Member Posts: 2
    edited February 2020 #3
    I've tried Zejula and

    I've tried Zejula and Linparza. On both my blood pressure skyrocketed in a matter of minutes and was feeling so bad that we stopped both drugs after one try. I am on Rubraca now. Blood pressure is fine but fatigue is killing me.

  • sailingwasserman
    sailingwasserman Member Posts: 1
    edited July 2020 #4
    Zejua

    My doctor in Florida where I had my Chemo and surgery wants me to take Zejua. Right now I am cancer free. She says it is now used on Patients who have responded to treatment to push back a reoccurance of the cancer.

    I am back in Illinois now and my doctor says I should not take Zejua, I should just enjoy my life. THat I don't need a chemo drug a I have gone through so much.

    I don't know what to do?

  • funmaru
    funmaru Member Posts: 13 Member
    edited July 2020 #5
    Zejula

    sailingwasserman I would get a second opinion before deciding whether or not to take it.  Cancer can come back and this medicine prevents that.

  • funmaru
    funmaru Member Posts: 13 Member
    #6
    Zejula

    I started it last month. At first I felt fine except for a little trouble going to the bathroom but now I have mild joint pain and stiffnes and fatigue.  I have also developed bruises on my legs.  Honestly, I'd rather have all of that then get cancer again so I'll keep taking it as long as my doctor recommends.

  • Hayburner
    Hayburner Member Posts: 4 Member
    edited August 2020 #7
    Zejula

    I finished chemo with no issues and "virtually no evidence of disease" but was put on Zejula/Avastin for maintenance. The Zejula was not for me. It knocked me out completely. I mean, unconscious in my chair. And my BP went off the rails. I've had BP issues for decades. The doc added more BP meds but that had no effect. so afer a week we stopped Zejula and switched to Lynparza. Funmaru, I had the same effects from Lynparza that you had from Zejula except that my BP is unbelievably normal and I never pass out. So I did my 100 days of Lynparza, had a scan, found it wasn't working and am now starting monthly chemo with Doxil alone. This is a battle that isn't easily won, isn't it?

  • Sarads
    Sarads Member Posts: 5
    edited October 2020 #8
    Zejula

    I have been on Zejula for a week now. Side effects I noticed is Dry Mouth, ans not sleeping well, waking up and not going back to sleep.

    My knee bother me, I have high Blood pressure so record that.

     

  • Bonniekins
    Bonniekins Member Posts: 6
    #9
    Zejula

    I was on Zejula as a maintenance med for about a month. Felt super for about 3 weeks. Then, overnight, I had an autoimmune reaction to it that caused a fever of 103, extreme dripping sweats, and finally loss of balance. It had caused Hepatitis. Was hospitalized almost a week before the doctors figured out the cancer med was causing my liver inflammation. It took 5 weeks afterwards to feel somewhat normal again. I think that I'm an extreme case as my body has always been very sensitive.

  • GratefulSurvivor1959
    GratefulSurvivor1959 Member Posts: 2
    edited January 2021 #10
    Zejula

    I have been on Zejula for three months.  I had an initial increase in blood pressure but that was temporary.  It is normal now.  I do have some joint pain but at 61 it is difficult to tell whether it is age related or medication related.  I have had hot flashes since I have been taking it.  I never had hot flashes like this when I went through menopause.  Initially I had a slight bit of nausea but that passed aftert a while.  This is much better than Lynparzza.  I had terribly elevated liver enzymes with that one.  Give the Zejula a chance.  The nurse at Biologics told me many of the side effects are temporary.

  • GratefulSurvivor1959
    GratefulSurvivor1959 Member Posts: 2
    edited January 2021 #11
    sailingwasserman said:

    Zejua

    My doctor in Florida where I had my Chemo and surgery wants me to take Zejua. Right now I am cancer free. She says it is now used on Patients who have responded to treatment to push back a reoccurance of the cancer.

    I am back in Illinois now and my doctor says I should not take Zejua, I should just enjoy my life. THat I don't need a chemo drug a I have gone through so much.

    I don't know what to do?

    Zejula

    I would seriously take the Zejula.  Ovarian cancer has a high reoccurence rate.  I had no cancer after my chemo and surgery but my Oncologist said it is a war you have to keep fighting.  If this medication prevents a reoccurence, then it is a small price to pay.  God Bless

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    edited February 2021 #12
    Zejula for maintenance

    Hi, Ladies!

    I normally "hang out" on the uterine board, but I read here. I'm was diagnosed with Fallopian tube originally and then "secondary peritoneal" after my second surgery for staging. I was Stage 2 with endometriod adenacarcinoma. 

    Only recently has my GYN/ONC mentioned maintenance, specifically Zejula, and it kind of freaked me out. All along he has said, "You're fixable," and optimum debulking with surgery got it all, except maybe microscopic cells, and "Chemotherapy would get the rest. And you can go on and live your life!" I thought I was going to be "done" after my last round of chemo, and being on a serious maintenance drug isn't "done!"

    I really appreciate y'all describing your experiences with this drug. Any input is very helpful. I'm going to have to make a decision in the next two months. 

    Good Luck to All,

    Alicia

  • Michellemoniq88
    Michellemoniq88 Member Posts: 1
    edited March 2021 #13
    zejula

    Hi everyone

    I just finished surgery and chemo for stage 4A OVARIAN cancer.  Im 3 weeks out of treatment and my Dr suggested Zejula.  He said my cancer has a 95% reoccurance rate and also said its a personal choice regarding mainteance meds.  So I tried it.  Lasted 7 days I was so sick.  Vomiting, severe nausea and constipation that resulted in a blockage that required treatment.  I decided to stop it and now Im living in fear of reoccurance.  I feel as if the side effects of Zejula were worse than chemo in my opimion since i was sick every day.  Anyone else in fear of reoccurance?

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    edited March 2021 #14
    So sorry it made you sick!

    Hi, Michellemoniq88,

    You might notice I posted on this thread a month ago, and you are the first person to write anything. I have scoured several of the boards and can find very little info about Zejula. From what I can tell, it's very different for everyone. I'm sorry to hear you thought it was worse than chemo...and ironic that what my chemo nurse told me was that, "It's not chemo. You won't be sick like you have been." 

    I don't know what kind of cancer you had, but mine was/is endometriod adenocarcinoma, Stage 2, Type 2, so I think my chance of recurrence is only about 30%. It's a terrible decision to make....whether to take this drug or not. What I've thought so far is that I would try it. Some people on these boards report that they are fine with it. I know that I can't continue to live as I have on chemo (I just finished round 6 two weeks ago). ...cuz that's NOT living. I just had my post-treatment CT last week and am waiting for results. The Zejula or not decision will come in about 8 weeks.

    I wish the best for you. And I hope some other women will respond here.

    Best, A

  • jfoxpascal
    jfoxpascal Member Posts: 1
    edited May 2021 #15
    Zujela

    I have finish chemo and surgery. My doctor now wants me to take Zejula but I'm terrified of the side effects because I have been so sick during the six chemo session.  I have barely had two days in a row when I wasn't sick since I started treatment 

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #16
    Dear jfoxpascal,

    I'm supposed to start taking Zejula the first week of June. I'm not happy about it and very scared of side-effects. I asked my nurse..."So every thing I've read people who have actually taken the drug are 1) either really, really sick and descibe it as "worse than chemo" or 2) they're fine with it. It's black or white, no gray. Is that kinda true?" She said it was.

    I asked.... so since my bloodwork held up so well with chemo was that also likely to be true with Zejula? She said it was.

    I feel like I have to try it. Fingers crossed.

    Ket us know if you take it and how you do. Good wishes & luck

    Alicia

  • okeor
    okeor Member Posts: 2 Member
    #17
    https://csn.cancer.org/discussion/comment/1672149#Comment_1672149

    I started on Zejula 2 weeks ago. After one week I got Covid! Lucky me! I will be back on it this week.

    During my first week on Zejula I felt fine! Blood pressure Normal. I take 200mg at bedtime with compazine 30 min earlier!

    hope to learn from group!

  • okeor
    okeor Member Posts: 2 Member
    #18
    https://csn.cancer.org/discussion/comment/1711221#Comment_1711221

    I started Zejula in Dec, had to come off several times for low platelets and then covid. I was on it 2 weeks straight out of 10 weeks. Now recurrence and off it. Doctor says I’m platinum resistant and we will talk next week! Ovarian 3 c! Anyone with this????

  • a1sssls
    a1sssls Member Posts: 3 Member
    #19
    https://csn.cancer.org/discussion/320605/has-anybody-took-zejula-chemo-pills-for-maintenance

    I started zejula 10/31/23. Went through high blood pressure, low WBC, low platelets, elevated kidney and liver blood values. Other than high blood pressure, the blood issues have resolved. Except 1: my RBC dropped dramatically and I was very anemic. Went off zejula for 3 weeks. Resumed at 100mg and have stayed at that dose.
    My BP is now under control, but I take 3 meds for it, plus 2 more for the BP med side effects.
    I was initially told your body adjusts somewhat after 3-4 weeks. I do take it at night to avoid nausea. But, the low RBC started 3 months after starting it and dropped dramatically. I did have blood tests every week for 2 months, then monthly, but if any problems I went back to a 2-week schedule.

  • dolphinkjt
    dolphinkjt Member Posts: 1 Member
    #20

    I was diagnosed with Stage 4 Fallopian Tube Cancer is 2022. I started Zejula in Jan., 2023, after infusion chemo. The standard dose is 200mg daily but I started to get severe body tremors so my oncologist decreased it to 1/2 the dose. I relocated from NJ to MN in early 2024 and started my oncology care at Mayo Clinic. My new oncologist wanted to to try and go back to the standard dose but my body just cannot tolerate it so I will remain on 1/2 of the dose. My most recent CT scan showed signs that there may be active cancer again so I am getting prepared for my 2nd round of chemical chemo.

    I am just looking for support.

  • a1sssls
    a1sssls Member Posts: 3 Member
    #21

    Hi. I have stage IIIc fallopian tube cancer. After debulking surgery, went through 6 rounds of chemo. Started zejula 11/23. I also cannot tolerate 200mg - very bad anemia. Started 100mg in Feb - have been doing much better with it.
    I’m so sorry you may have a recurrence. This disease is so scary! Wishing you the best.

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