zejula or not?

[Heidels]

I have OVC, 3C. had a total hysterectomy, salpingo-oophectomy and omentectomy. I have read that recurrence now is highly unlikely for me. I did well with chemo. Had two before surgery and 4 afterward.I am now in remission and my Ca_125 is a 5. Is taking Zejula worth it? I was told it may give 8 extra months before a recurrence would happen. I was told 80% of women have a recurrence. I asked if I had a lower risk because everything was removed but she insisted it is 80% of women.I am confused Not sure if I should do Zejula.

[Cacocatz]

Hi Heidels

Other woman have had success with it unfortunately I was allergic to it ( was given it after 2 Nd recurrence)

It was not available after frontline. I am also 3 c high grade have now had 4 cycles of chemo almost yearly.

Frontline taxol and carboplatin

Then doxil and carboplatin

Then Carboplatin Zejula

Carboplatin Feb 2019 no response after two treatments changed to Doxil same few months later got worse thought this is it ! Then after 3 treatments changed to taxol weekly completed 17 weeks with good response 75% reduction in bulk of lymphadenopathy.

Finished Dec 2019 ca125 going up again other symptoms so my thoughts are read the research and it’s worth a try.

Best wishes

[caf132 in reply to Cacocatz]

Did your tumor load reduce also ? I have three large tumors. Was on carboplatin, Gemzar and avastin- did not work. Then Cisplatin and Ifosfamide - growth still. Now on Doxil - I think they are growing. I really think this is it. I wonder if taxol alone will reduce tumor size ?

Thx for sharing

[Rosellen12]

I believe it’s worth trying, the latest research published in the Cure magazine claims it’s a miracle drug. Because there is a very high chance of reoccurrence the doctors say and after reading post on this site you will see there are a lot of reoccurring cases. I had a reoccurrence myself. All we can do is research are choices & hope we make the best decision. It’s an individual’s decision and keep in mind everyone responds differently to medication. Good Luck & hope you don’t every have a reoccurrence.

[Mamaw1]

I have been on Zejula for over a year. Till recent my numbers were around 7. They are now 87. I asked if there is a possibility that I have built a tolerance to this drug and the dr said that it is a possibility. I am currently not taking Zejula do to a mix up in insurance. Ct scan atvend of ml month. Right now taking large doses of cbd oil. Vitamins and today adding turmeric. Good luck to both of us. Oh yes, I had a reoccurance 6 months prior to Zejula

[Rosemarymemo]

I had exactly what you had and had the same treatment. I had s reoccurrence 2 years ago and more chemo. I was then put on Zejula to prevent another reoccurrence. I am on my 15 month and doing great. My CA125 is elevated but may be a result of the medicine. CT is clear. It is worth it but there are many side effects and is very expensive. I luckily have no side effects but I am unusual. This disease is chronic and will come back. The earlier you find it the better the cure. I’m checked monthly and get a CT every 3 months. Hard decision. I will keep you in my prayers.

[Heidels in reply to Rosemarymemo]

So many have taken zejula because of a recurrence. I am being placed on it and just finished Chemo in November.I am in remission.Is this correct to take this now or do most doctors wait until a recurrence happens?I have read much about Zejula and it always talks about this drug being taken when a recurrence happens first.Don't know what to think anymore.

[GwenHP in reply to Heidels]

Zejula can be used either as a maintenance drug - aka when someone is in remission and are trying to delay any onset of a recurrence, or as a treatment drug when someone has active disease.

[Archeveritas]

I know this is a hard decision. I’m also terrified of recurrence. I had similar surgery and chemo and have been NED for 2 years with no meds. If it came back, then I would consider all treatments , but for now my gyne-onc has not recommended Any drugs to ward off recurrence. Good luck to you😍

[Heidels in reply to Archeveritas]

Archeveritas, you had everything removed like I did mand you have been fine for two years with no meds? Right now, I have no disease but they want me on Zeluja now. Everything I read about it seems that it is given AFTER a recurrence. Maybe I am wrong about that.Why didnt a doctor suggest zeluja or some other maintenance drug?

[Pianoplayer731021 in reply to Heidels]

My Dr. put me on Zejula after 4 rounds of chemo, major surgery and another 3 rounds of chemo. My last round was May 8 and I started Zejula on July third of this year. My dr. wanted me to start it in June, but I had issues with miscommunication with the company. That’s why it was slightly delayed. My dr. suggested that I take Zejula before any recurrence.

[Pianoplayer731021 in reply to Archeveritas]

You are very fortunate to be free of cancer for 2 years with no meds. What stage was your cancer at after surgery? My dr. Staged me at 4 after major and debulking surgery. My dr wants me on Zejula now, don’t always like my neuropathy in my feet; but I am trying to hold cancer cells back. My Ca125 is a 14.8. It has only jumped up from 12 in the last two months. My CA 125 could even be from some arthritis pain I have, basically inflammation. Can’t worry about that ca125 too much. The dr. Will let me know if he is concerned.

[Archeveritas in reply to Pianoplayer731021]

They did not stage my cancer because they considered it a recurrence 4 months after my initial endometrial cancer diagnosis And a hysterectomy. They did exploratory surgery because of my symptoms and a noticeable spot on the CT scan. 7.5 hours later and 3 surgeons working on me, they had removed my inner/outer omentum, part of my colon, and part of my bladder. It was beyond a nightmare, but 6 weeks later I began chemo. I have neuropathy in both feet and tremendous hip pain but I’m so happy to be here. I was diagnosed with primary peritoneal cancer which acts the same as OC. I asked my gynecologic/oncologist if he wanted me on any maintenance drugs and he said not at this time. I just move forward as best as I can. I hope the Zejula does the trick for you. I’m also Braca negative.

[Pianoplayer731021 in reply to Archeveritas]

Sorry about your hip pain. I had cancer in my tube. They took out all the female parts, my omentum, 2 spots on my intestine and some cancer on my abdominal wall. My surgery was exploratory too. Maybe not quite as long as your surgery. I’m surprised that your dr. didn’t put you on Zejula or another maintenance drug. I guess you just have to follow your doctor’s advice. My skin is so dry,neuropathy, joint and muscle pain and bruising. My joint and muscle pain isn’t quite as bad as when I had those chemo infusions. Nothing pleasant about this cancer. Hang in there ☺️

[BlueQ]

Hello I was diagnosed May 2015 Ovarian Carcinosarcoma stage 1B I was lucky I caught it when I did, 6 months prior my Ob Gyn was more concerned with fibroid tumors than a complex cyst on my ovary at the time it was almost 6 cm I went to the emergency room 6 moths later when I wasn’t feeling better to find a 15x12x11 cm tumor on my left ovary that lead me to md Andersen cancer center (love them) I’ve been great full but this past year coming up on my 5th year I started having problems with hip for last 10 mnths doctors told me it’s arthritis (my insurance wouldn’t allow me to have scans because it wasn’t medically necessary) long story short I changed my Medicare insurance I can now go back to Md Andersen but my questions are embarrassing does itching hip pain and bleeding,nauseous, constipation plus diarrhea it can’t make up its mind also indigestion/heartburn constantly and down to one meal a day and if then I bloat up so much it’s uncomfortable equate to a recurrence?? I go Monday to see my doctor but I’m scared and can’t sleep! Anyone have anything similar (yes I was in Cipro for UTI monistat for yeast infection it didn’t cure my symptoms the bleeding scared me the worst I had a full radical hysterectomy with 137 biopsy done please help!!

[christine2]

I had the same diagnosis and surgery and completed 6 cycles of Carbo /taxol. What chem drugs were you given? I was clear for 21 months then the cancer reoccurred . I have now completed 3 of 6 treatments of Carbo/doxil which has been much harder to tolerate . I agree with your doctor that there is an 80% chance of reoccurrence. I would do whatever you can to keep from having a reoccurrence. Can you take Zejula without completing a second round of chemo? If, so, I think it’s better than having a reoccurrence and having to undergo chemo again.

[Heidels in reply to christine2]

I finished chemo in November and they want to put me on Zejula now.I did take dox and carboplatin.I have had mixed info about things. I was told it was mandatory to have genetic testing done in order to have Zejula but they are in the process of getting this drug for me and nothing more said about testing for the gene.I had one doctors assistant tell me I was "cancer free". I told her one cant be cancer free unless you make five years. She then said they dont like to say the word remission anymore.She said I would easily make 5 years but she says things to appease me, I think. I now see another doctor and she is a straight shooter. She said I have an 80% chance of it returning although I have read( Mayo Clinic site) that what I had done makes cancer unlikely to return.I know the side effects of Zejula and dont know if I should risk that but then, I am afraid that if I refuse it, and cancer returns, I will wonder if it would have not come back if I had taken the zejula.I just had a pet scan and that showed NO sign of any cancer cells. My cancer was contained. Had both ovaries taken out and the omentum, because some cells had advanced to that area. ( had all-female parts out)The new doc asked me why I had chemo before surgery? I really didnt know but figured it was smart to do to kill of cells before cutting open. She said its because I had a lot of cancer in abdomen/omentum but that was not what I was told at first.I am still confused. Not sure what to believe and who to trust.

[SurvivorSusan in reply to Heidels]

Taking chemo before surgery is to kill the cancel cells that are floating around in the abdominal cavity. That is my understanding. Easier to clean everything out when they do the surgery. I had the same thing.

[Tesla_7US]

Heidels. Along the way you have been given incorrect information. Your current doctor sounds accurate for your diagnosis. You absolutely must have your tumor material tested for genetic mutations. Genetic blood testing alone is not the complete picture. Find out if you have germline or somatic BRCA and or HRD+. This is imperative. Those answers will help you make educated treatment choices. Olaparib/Lynparza works best if you are BRCA+. You can research your diagnosis and treatments at BioMed Publications online.

[Heidels in reply to Tesla_7US]

I had testing done. Tumor ok, BrCa.. negative.I still have not taken Zejula because if I get a recurrence, how can anyone know it was this drug that kept it away for a longer period of time since there is no past history on this. I think I should wait and when or IF it returns, then perhaps do Zejula.Right now I am in complete remission.The last chemo was the end of November 2019.Had pet scan middle of January and was NED.Next scan is due in April. I am not sure if I want to take Zejula and suffer possible side effects and now that I know I do not carry the BrCa gene, Zejula is less effective for those that do not have it so is it really worth it?

[Tesla_7US in reply to Heidels]

Heidels, I AGREE WITH YOU COMPLETELY! I THINK YOU'VE MADE A WISE DECISION. I had breast cancer in 2006. Docs prescribed me an aromatase inhibitor, supposed to "delay reoccurrence". I took it for 3 weeks and was in so much PAIN I decided I would rather DIE than have to live that way. I stopped taking it and so did my mother. Yes, my mom, my aunt and I all had BC at same time. A documented side effect of that drug is rapid onset osteopenia and an over 200% increased likelihood of getting uterine sarcoma, a cancer MORE deadly than the one that triggered my mastectomy. This is an example of why due diligence and second opinions can help us each to make the best decisions for our own treatment. My mom and I did not recur. My Aunt, who took the drug for years, died of B/C.

[Lizchips]

I had 3c clear cell carcinoma , I did intraperitenil chemotherapy, it's chemotherapy they put in abdomen coats organs adds 1 1/2 yrs but doc said closer to 3. I haven't ever taken zejula, if you trust your Dr ask what she would do if in your shoes. That's what I did. 6 yrs later no reoccurance. But I had 18 rounds of chemo in 14 weeks. With IP chemo. Prayers Liz

[GwenHP]

You need to remember that the 8 extra months is an average of a large population of women. And in that population, some it didn't help and some are still in remission years later. And there is a compendium of women in-between - the average of which stayed in remission for 8 months. When you look at treatment/maintenance options, it's useful to look at the statistics, but recognize that statistics don't apply to individuals. It gives you a likelihood of whether an individual will respond, but there are no guarantees. I'm a perfect example of how statistics don't apply to individuals. I'm stage 3C high grade serous and statistically I had less than a 20% chance of living 5 years - on Feb 7th, I'll be 15 years out from my diagnosis. I had one recurrence, and again the odds would have said I would have continued to have recurrences with shorter and shorter remissions. My last chemo was in November 2008 - more than 10 years ago.

And I do believe there are papers that have been published that show women who have an optimal debulking in which everything visible has been removed have a better long term prognosis. I just can't lay my hands on it at the moment. I'm pretty sure some of that data was presented at one of the national conferences for ovarian cancer patients here in the US. Regardless, again be mindful that it is statistics. And again statistics don't apply to individuals. My mom was Stage 1 and never got to a remission.

Basically my advice is to learn as much as you can about your options. Make a decision and don't look back, knowing that you made it with the best information you had at the time.

Best wishes,

Gwen

[Heidels in reply to GwenHP]

Thanks Gwen for your input. I am also high serous grade 3. I am soon to start Zejula. If you find those articles on debulking all , please contact me again because I would like to read them.I hope I get as lucky as you. Thanks !

[Tesla_7US in reply to Heidels]

Heidels, I'm not positive but the study you're looking for might be GOG 182.

[JanCan15 in reply to GwenHP]

Your mom had OC stage 1? I was diagnosed in 2016 with OC stage 1A. Had radical hysterectomy and 24 lymph nodes removed. Then 5 rounds of chemo. How long ago was your moms cancer? Did she have surgery then chemo? Or other treatments? I’m so glad she hasn’t had a recurrence! I hope I never do!

[JanCan15 in reply to JanCan15]

Wait, I might have read that wrong. Did she not get rid of cancer?!!

[GwenHP in reply to JanCan15]

No. My mom never went into remission. She was dx in 2002. She had surgery and chemo but at that time the doublet of carbo taxol wasn’t a standard of care yet. She only had carbo because they thought they got all the cancer and so it was just a “cleanup” of any stray cells. However after 6 rounds her Ca125 was on the rise. Over the next 7 years she endured a number of different kinds of treatments and was part of several clinical trials. Her best combo was her 15th/16th drugs - avastin + cytoxin. That dropped her CA125 from over a 1000 down to 52 in the first cycle. She remained in stable disease on that combo for a year to a year and a half. But then her CA125 started to rise again and never got back down to the normal range.

[Zand in reply to GwenHP]

Gwen, thank you so much. I also had serous high grade OC. Diagnosed in 2017, followed by surgery and chemo, and then niraparib (zejula) as part of a clinical trial. Also reminded frequently of the 20 percent success rate for recurrence. I remain positive but as I approach the 4 year mark, I’ve become anxious. Your input has given be added confidence that I will have more time with my grandchildren. Thank you!

[Salavie]

Yes take it I had exact same thing you did with the exception they took out part of my rectum and part of my stomach First round of chemo was taxol and carboplatin, did very well, got back on the treadmill functioning like there was never anything wrong with me , then my CA 125 a year in and a half later started to rise found a small tumor in my stomach , the second time then I was put on a second round of chemo carboplatin and doxil,That’s when they put me on Zejula,I’ve been taking the Zejula about a year, no side effects I am on one pill a day... I think they only want to put you Zejula, after it comes back the second time , at that point your cancer treatment is palliative and not curative.

[Pianoplayer731021]

I asked the doctor if Zejula was worth taking. Dr. said that it’s the best maintenance drug for ovarian cancer. This is the only drug to take, because I don’t carry that BRCA gene. Some of the other drugs work with the BRCA . They told me this would be my best option. I would definitely take the Zejula. You might be one of the 20% women that shows improvement and maybe no recurrences. I just try and stay positive, because if I focus on that 80%; it plays on my mind. Hope you do ok, I know it’s a tough battle. Take care