What can you tell me about Zejula?

[lucybake]

Any of you taken Zejula after the 2nd round of chemo? If so, what has been your experience? My oncologist is suggesting I take it, but of course, it's up to me to decide whether I want to or not. The other two are Lynparza and Rubraca. These are all oral drugs.

[Tesla_7US]

Lucy, are you BRCA 1 or 2 positive? Some PARPS work better than others if you are.

[lucybake in reply to Tesla_7US]

No, I'm not BRCA 1 or 2 positive. What PARP would work best for me?

[Salavie]

I have been on Zejula four months now , I was on 200 in the beginning but it causes my heart to race in my white cell count drop , So my doctor lowered the dose to 100 everything is fine no adverse reactions at all,

TAKE THIS!

[lucybake in reply to Salavie]

Thank you for replying. So now you just take one 100 ? When were you diagnosed?

[Salavie in reply to lucybake]

I was Diagnosed June of 2017 Stage III c. Complete hysterectomy took part of my stomach 12 chemotherapys With Taxol and carboplatin first time , Cancer recurred after numerous Bowel obstruction’s and they had to reroute my stomach again, Six more Treatments with a Doxil and carboplatin, now I take one pill a day.

[Cjbloomq]

Lucy, I have been on Zejula for 2 years now. Take 300mg a day,no real problems with it. I am BRCA negative,so that is why I'm on Zejula. Hope this helps.

[lucybake in reply to Cjbloomq]

Yes, you have helped! Thank you. So you take 3 pills in one dose every day? I found on a reliable website that 100 mg. of Zejula is around $7,227 for a supply of 30 capsules!!!

[Cjbloomq in reply to lucybake]

Check with your doctor there are Grant's out there to help you pay for this. You may be able to pay nothing if your income is low. Also check with manufacturer to see if they can help. Good luck with this.

[lucybake in reply to Cjbloomq]

Thanks!

[Lobster2]

Hi Lucy. I am BRCA 2 positive and had a recurrence in 2018. I had 5 rounds of chemo in 2018 and then started on Zejula. I've been on it for 1 1/2 years now, non-stop. I never have issues with my blood work though others have reported low blood counts. When I first started taking it life was HELL. My nausea was worse than it ever was when doing infusion. I started at 100 MG for 2 weeks and had no issues. 3rd week they bumped me to 200 MG, no issues. 4th week is when HELL started at 300 MG. I was really sick. So then they dropped me back down to 200 MG and there was no improvement. I was throwing up 6 to 7 times a week, even taking nausea meds 24/7. I also had no appetite, especially for any protein related foods. I lived on fruit smoothies. It was so bad that I could look at something and it would make me retch or throw up. My other side effects were very thin, fragile nails (mine have always been very strong) and extreme weight loss. I lost about 25 pounds during the 2 months it took to get my nausea under control. I also had no appetite for anything sweet or anything fried.

I ended up finding my own solution from this website. Someone else posted about Zejula and she stated that she had to go to an alternating dose of 100 mg/200 mg every other day. I was so sick that I took it on myself to give it a try and within 2 days I saw improvement in my nausea. I told my oncologist what I did. He had never thought of that option. He said as long as I didn't have a recurrence I could stay on that dose. He actually liked that dosing and started using it for other patients who couldn't tolerate 200 mg daily. After 2 months, taking 100 mg one day and 200 mg the next, I no longer have ANY nausea. After about 9 months all of my side-effects are gone and I've put the weight back on. I feel perfectly normal and tolerate the drug very well. I have noticed my hair is thinner than it used to be and it makes me wonder if the Zejula is causing that but I haven't been able to confirm that since I'm on BP and cholesterol meds too.

Good luck if you decide to give it a try. It does work for many patients. My doctor told me he only has 1 other patient who has been on it longer than I have. My last CT scan showed improvement all around and my CA125 hovers between 9 and 12. Keep us posted and keep asking questions. We are all here for you!

[lucybake in reply to Lobster2]

Wow - I 'm sorry you had to go through HELL before getting the proper dose figured out!

Yes, we are all in this together. Thank you for replying.

[Canoer]

Aloha Lucy! I'm on my fourth different treatment for Stage 4 ovarian. Currently, I'm on Zejula and Avastin. Started 300mg of Zejula, but blood counts were low, so took two weeks off. Then went back on and dropped to 200mg. Recently, my counts were low again and doc wants to drop to 100mg. I wasn't so sure Zejula was going to do the job as was thinking this would be more for maintenance. My lymph nodes were super swollen as well as one of my legs and both ankles. Also, I was peeing blood as my tumor perforated into my bladder. Low and behold, within ten days of starting this treatment, all swelling was gone and I wasn't peeing blood. My HE4 dropped from almost 500 to 110 as of last week. So, I'm very impressed with Zejula and it seems to be doing a good job. I do have a RAD51C genetic mutation, so not sure if that's what kicked this drug into working so good for me or not. I believe Zejula is the only PARP that they are using as a frontline treatment if that helps at all. Take care!

[lucybake in reply to Canoer]

Thank you for sharing your incredible experience. You take care, too!

[Rosemarymemo]

I am on Zejula and have taken it for 15 months. So far so good. CT remains normal. Lots of possible side effects. I have none. Good luck.

[Imdunn]

Zejula was like a poison to me. It destroyed my platelets, potassium, and magnesium. I had to go off of it after 2 weeks. So now I don’t know what is in my future.