For the PARP inhibitor gals

[Lobster2]

What are your undocumented side effects? I'm on Zejula and have experienced weight loss and very thin, fragile finger nails. Anyone else relate? My first 2 months on this qas pure hell from the extreme nausea (worse than any infusion I had). Thankfully that's gone.

[Cjbloomq]

Hi,I am on Zejula,300mg a day since May. I have not had any major side effects,just dry mouth and some thinning of hair,even though it never grew back as thick as it was before.

I've always had fine nails,so can't tell if Zejula is effecting them. Some aches,but could be anything(getting older)LOL.

Have definetly lost weight with this,never nausea,just no appetite. Trying to eat better though. Hope this helps. Stay strong .

[KCWM in reply to Cjbloomq]

Just been ordered Zejula. Very afraid of the side effects. Starting on 100mg, then 200, then 300. Hope it keeps cancer away.

Does anyone know if it really helps?

[Bahamas22 in reply to KCWM]

Helped me for months. Unfortunately it stopped working for me after months. But it did lower my CA 125 on the high 200 down to 33 . Still low CA numbers back on Doxil for the active cells for 6 cycles then to find a new maintenance

[Lobster2 in reply to KCWM]

Here's something I learned when I started taking this stuff. It does seem to work. I've been on it since August and everything looks great for me and CA125 is 12-14. Doc says he will be taking me off of it shortly to give my body a break. I started like you, 100, 200, then to 300. I was ok at 100 but by the time got to 300, nausea set up something awful. I also had zero appetite and not one thing appealed to me to eat. That's when I lost so much weight. From a tip I got on this site, I moved taking my meds from p.m. to a.m. with food. My doc dropped me back to 200, but I was still really sick. A post on this site said her dosage was to take 100 mg 1 day and alternate to 200 mg next day. So I decided to try it for myself to see if that would help. It made a HUGE difference and I could tell I was improving daily with the nausea issue. I let my doctor know my self-prescribed dosage and he thought it was a good idea and wondered why he had not thought of that. At my last appointment he told me that he has now moved several of his patients to that dosage due to the same issues I was having. I now have my appetite back and have not had any nausea since October. Just know, though nausea is the #1 side effect, not everyone experiences it to the same level. For me it was rough.

[KCWM in reply to Lobster2]

Thank you your reply it was very helpful. Will get my first monthly supply of 100 mg on Monday. Will keep the site posted on how it goes

[Bahamas22]

What dose were you on? The nausea, fatigueness and constapation is what I had

[Lobster2 in reply to Bahamas22]

When I first started I struggled with constipation but that has leveled out. Taking stool softeners 2x a day and drinking Miralax in the evening routinely helped. Occasionally I would have to take 4 Senacot. My nausea kicked in at 300 mg. Doc put me down to 200 mg. and still bad. Now I'm alternating each day from 100 mg to 200 mg. No more nausea and I feel pretty normal! I've had some fatigue but that has gotten less the longer I've been on this.

[malka210]

Thanks for all this information as my doctor is thinking about it for me. Pray you get stronger sister warrior

Millie

[ingrid48]

Thank you ladies. I never had any reaction on oliparib ( lymparza) my doc is now switching me to Zejula, 300/ day, I hope to do ok. I'll keep watching and posting.

I did great on olaparib but Ca125 started rising, went on chemo, stopped, raised again.. It has been going on since 2011.. But I'm still here!! and I'm 70

Ingrid

[Quyana in reply to ingrid48]

Thank you, Ingrid, you give me hope.

[Rosellen12]

Hello, I was the one alternating 100 to 200 every other day. Started at 300 mg for only one week. Blood counts too low & nausea, so went to 200 but still nausea & Biggest Problem was unable to sleep & fast heart rate even after switching to am so I started alternating. My ca 125 stayed low at 7-10, took it from Feb 2018 till mid Dec 2018, almost a full year till my blood count, neutrophils started dropping even after lowing to only 100mg a day. So had to Stop & after a 2 week rest started Lymparza which only took for 10 days. That stuff is horrible, Fatigue was the worse & lowed Neutrophils & Red Blood Cell count causing anemia. Off all med for a month now, will see doctor next week to start something else. Sorry got lengthy.

Zejula does cause thinning of nails as well.

However I hope I can try it again after this break & it won’t lower my blood counts.

[SurvivorSusan]

I get very tired. Food preferences have changed. Lots of gas and very bad smelling sweat. It was much worse at the beginning though. After two months, I am adjusting. And the treatment is working, so that is great. I'm on Olaparib.

[Husbandteal]

Such a blessing to share on this site. 300 mgs dosage was tough on me and especially platelets. Off a week or so and dropped to 200 which had me still feeling awful so then went to 100 mgs. All was well for about seven months when my CA 125 began a frightening climb. CAT scan was clear as could be. My Zejula dosage was changed back to two mgs and I am tolerating it and feel good. Our bodies need time to adjust. I had one evening of extreme nausea three days after the change but no problem since. Foot neuropathy has improved, had some insomnia for a week or so but am now resting well. My blood is checked weekly and my platelets are fine as well as everything else. A new CA 125 report will come in tomorrow and I am praying it is going back down. I happened to meet someone else in this clinical trial early on and she encouraged me to hang in and it would get better......She was correct and I do hope this is of some help to you. I had same diagnosis August of 2017. Am understanding how it all never leaves your mind! I live by the three G's: Get up, get dressed, and get out!

[Quyana]

I have been on 200 mg of Zejula over 1 year. Bone pain was my only side effect worth mentioning until October of last year. My CA125 went from 12 to over 70 and is still climbing, but much slower; a consistent 6 was my number for 1 year after my surgery. The nausea, constipation, and vomiting are my greatest challenges at this time. Just before last Thanksgiving I started vomiting daily (6 - 10 times a day) and only got that down to 1 - 3 times a day when I stopped all medications though my doc is not happy with my decision.

My insurance switched pharmacies and the new pharmacy sent me much better literature on Zejula, as well as a patient support number for the manufacturer. I understand how the Zejula works much better and it makes sense, but this nausea and vomiting have kept me home bound for 3 month now. Since the docs could not come up with a reason for the vomiting or how to stop it and the CT scans and PET scans were all negative, I called the manufacturer. We talked for over an hour documenting my challenges. Though I got no solutions I had not already tried, I was told they would contact my doc and suggest stopping for 28 days and start again at 100 mg.

Knowing that constipation was a big part of this challenge, I only took what was ordered for me, but when I looked up each drug they all said they were constipating. So, I stopped them all. I also have severe fibromyalgia which complicates things and its pain killer was constipating so it went also. One month later I finally got a referral to a gastroenterologist who is baffled, but says it is definitely an intestinal challenge, not the cancer or fibromyalgia. Now we start on a new road of discovery.

However, most days I can now at least take a walk without vomiting and feel 1/2 alive most of the time. I have even started crafting again. But, I have decided not to start the Zejula again. I want to see what happens when I get this intestinal challenge solved and then I want my body to have a chance to recover and start fighting on its own. I have learned that the CA 125 tracks intestinal events, as well as the cancer. I am collecting numbers: for me bowel blockages are 280, my active cancer was 400, and my stable number is 6, but this under 100 is new. I swear that the reason the infusion knocks it down is because I have never been a pill taker unless it was vital. I know at this time and especially when this all started that I would never have been able to handle infusion again in the condition I was in and I was steadily getting weaker.

I am really trying to analyze what happened and what it all means. I know my cancer was pushed to a IIIC stage by a gynecologist not up on his cancer signs - I was a classic. When I went back to work in a very rural area, my apartment was filthy and I got an infection they thought was going to kill me and I think that had something to do with my recurrence. My second round of infusion included something to stop the growth of blood vessels to block tumor growth, but it unzipped my previous surgery so I had a massive mesh implanted to keep my insides in and stop the bowel blockages that were happening on a regular basis. I am wondering if my problems came from my inability to handle most drugs long term and if my body is trying to take the lead, again.

I have another appointment next week and I am sure the doc is coming loaded with reasons to start again, but I pray I hold my ground. If I had refused the initial treatment that i told the doc the research was not good on, I may not have been placed in this predicament. But, either way, God's got me and there must be someone I need to meet in this situation.

Thank you all for your input, it really helps me know what to look for and it is good to talk with people who understand this drug.

[ingrid48 in reply to Quyana]

Quyana, I'm constipated all the time but what helps me is eating lots of spinach, kale, cooked or raw, or in a smoothie, salads, fruits in addition to bowel softeners and drinking lots of water. I don't know that I would stop cancer therapy.. Please be careful, consult another oncologist for second opinion and keep us posted!

Keep fighting girl!!

Love and blessings

[Lobster2 in reply to Quyana]

I experienced some extreme nausea the first 2 months I was on the Zejula but what you have described seems debilitating! I look back at Aug. and Sept. and wonder how I managed to work with all I was dealing with! I sure do feel for you and all your struggles. You may want to try what I posted in an earlier reply. I'm taking 100mg 1 day and the next day I'm taking 200mg. My nausea has gone away. I stayed nauseated at 200mg. Do you take Zofran and Compazine for nausea? I alternated those 2 every 4 hours. Zofran does cause constipation. You have to find a regimen that will work for you to control the constipation. Does your clinic offer a nutritionist to help you? I have worked with 3 different ones when my constipation and nausea was so bad and they have very helpful information. They can help you. It sounds like your faith is strong so keep your trust in God and get everyone you know to be praying for you! I'll join you in prayer! Keep in touch!