Seeking advice from Lynparza, Rubraca or Zejula patients.

[TinaTina2020]

Hello all, I'm here in search of some guidance as this is my 1-year mark since I began maintenance treatment with Lynparza.

About 2 years ago I was diagnosed with ovarian high grade mullerian carcinoma - stage 3b. After a left oophorectomy, I began a regimen of 6 rounds of the combo Taxol/Carboplatin as it is commonly prescribed for this condition and stage.

Following surgery and chemo treatments, I was scheduled to begin the combo Avastin/Lynparza as the chosen maintenance treatment plan for me, but a bad Crohn's flare up resulted in an emergency bowel resection preceding a lengthy recovery. It wasn't until the start of the 2022 year that I finally began to experience the positive effects of the oral treatment Lynparza.

While it is relieving to finally be free from extreme pain and hospitalizations (insert the improvements in quality of life), I am in still in constant fear that this cancer is going to strike back unexpectedly. Everyone around me who has not had the experience is always advising against negative thoughts and as much as I acknowledge and appreciate the advice, I cannot help the anxiety.

I've spent hours/days researching survival stories as I enter the second year of parp-inhibitor treatments. One thing that catches my attention is seeing people be in remission while on Lynparza but having to now undergo another regimen of platinum chemo treatments as a result of stopping the oral medication.

Can someone please share their story and long-term experience with parp-inhibitors? why was the medication paused/stopped and/or if you have had a recurrence since being on Lynparza?

[Lily2023]

Hi, TinaTina2020, I’m glad you’re feeling better in terms of quality of life.

I’ve been on a parp inhibitor for a year (not Lynparza, though), same disease as you but 3c. I’m in remission so far. One of the things I’ve worked to accept about ovarian cancer is that recurrence can happen, even while taking the drug, not just after going off it. But my doctors tell me, “If/when it comes back, we treat it.” I’m learning to see myself as having a chronic disease. That can mean additional chemo and other treatments, and all the discomfort they bring. But on the other hand, it is treatable; a recurrence is not the end. That has helped me fear recurrence less.

As for anxiety, I’ve read a lot of comments and talked with many cancer support people. The message I hear is that anxiety is a normal part of having this disease, and it’s okay to feel it. That all makes me feel validated for my own anxiety, which makes me feel better. 🌸

[TinaTina2020 in reply to Lily2023]

Thank you for the encouraging words. Everything you said is point on. and I hope I can be positive. Mentally I know I must, but the issue is that I cannot help the feeling and that is where I struggle.

[delia2]

Hi. Your fears are normal. I don’t know about Mullerian OC but for stage 3 HGSOC the recurrence rate is 85%. If you google updated results of SOLO 1 you will see how well people have done after two years on Olaparib after frontline chemo. It’s been five years since stopping the drug and something like half haven’t had a recurrence.

[Lily2023 in reply to delia2]

Thank you for that info, delia2. That’s very encouraging.

[TinaTina2020 in reply to delia2]

Thank you. I agree with that, and I've spent a lot of time researching the SOLO1 trial too. I went as far as to follow a few of the patients that participated in the first two trials. Some unfortunately have already passed... but you are right, many have remained in remission.

[lovemy3dogs]

I was diagnosed with stage 3b ovarian cancer in 04/2019. After a complete hysterectomy I received chemo for 18 weeks. I started on Lynparza after completions. I was not given Avastin because of a partial bowel obstruction, a result of scar tissue. (A possible side affect is bowel issues.) I completed two years on Lynparza in 10/2021. I am monitored every 3 months for possible recurrence but so far, so good. As stated by someone else, I'm told if it shows up, we'll treat it. I'm glad I am able to get this monitoring as it gives me peace of mind, unlike many who are dreading it. No one knows what the future holds so best to just live your life and hope for the best. The stress of worrying is more detrimental.

[Lily2023 in reply to lovemy3dogs]

Could I ask what kind of monitoring you get every three months? Blood tests or scans? I’ve been offered scans every six months, but not every 3. They give me peace of mind too.

It has taken me a year past chemo to learn to just live and hope for the best. I didn’t think that would be possible, but I’m getting there.

[Heidels in reply to Lily2023]

in the beginning blood tests were weekly, then became every month and then every 3 months .My scans were every month at first, then 3 months but now, after almost 4 years of being cancer free, my scans are every 6 months. I was told that the longer you go and remain NED ( no evidence of disease) the farther out your tests will go. I asked why is that and I was told because the longer you go being NED, the less likely it becomes to return, so there is hope !!!!

[TinaTina2020 in reply to lovemy3dogs]

Thank you for sharing your experience. Your story is remarkable.

[lovemy3dogs]

I get a CT scan and blood work. Since my CA-125 went up to over 6000 before my surgery my doctor feels it will be a good indication of any issues. So far it has stayed around 11. I'm fortunate that my insurance pays for the tests. I am also in a clinical trial for a vaccine produced from my tumor. For it to be utilized the tumor has to be below a certain size so they need to find it early. I should add I am BRCA +.

[Nanfoster in reply to lovemy3dogs]

Hi, I was diagnosed with stage 2 HGS Ovarian cancer, it was discovered, abdominal surgery, at an earlier stage because my Fallopian tube twisted, very painful!

I was curious if your CA125 came down following your surgery, or after your first round of chemo? Txs for responding, all the best.

April 2023 - I did some research and my ca 125 went down to 6 after my abdominal surgery, hysterectomy, and before chemo was started.

It was at 39 and having the cancer removed dropped it down to 6-7 for over 2 years it’s remained low! I’m NED and I have been on Zejulla following frontline,

no recurrence. So far!

[TinaTina2020 in reply to Nanfoster]

I see this remains unanswered. Not sure if the question was meant for me or Nanfoster... In my case, CA125 came down for the first month checkup post surgery and then back up to 37 because I was not under any treatments. It wasn't until nine months later when I started Lynparza that we noticed some improvements.

[Lily2023]

Thank you. I was given CTs every 3 months for 9 months post surgery. Then they moved me to 6. They suggested making it only ANNUAL! But they agreed to every 6 when I asked for it. I know there’s scanxiety, but I get peace of mind for months.

My blood tests are still monthly. I have a port, so that needs to get flushed. They do the lab work at the same time.

[TinaTina2020 in reply to Lily2023]

Are the scans still offered while being on maintenance? I get blood work (cbc, comprehensive panel and ca125) every six weeks, plus the port flush but no CT scans.

[Lily2023 in reply to TinaTina2020]

hi again. Yes, Im getting scans every six months while on maintenance medication. Blood tests are still monthly. I was offered the option of scans once yearly to fight “scanxiety,” but I prefer six months. I feel less anxiety knowing where I stand.

[Catcher910]

Diagnosed with 3C Fallopian tube cancer 6/18. Following complete hyst and standard chemo regimen I was in the Athena trial but had to quit it after 9 months because I got very ill from it with unrelenting nausea and severe weight loss. I’ve been on Lynparza for a couple of years. Had to be on fluconazole for 6 months after a lung biopsy showed I had Valley Fever (NOT lung cancer as was assumed!) so that altered my Lynparza dose. After moving cross country it’s been difficult to get the Lynparza on a timely basis, so there have been gaps in treatment. Next week I will have a biopsy of a tumor near my rectum that doctors have been watching that has recently enlarged. CA-125 and CEA are both normal. I am BRCA negative. No family history of any type of cancer.

No side effects from Lynparza except occasional nausea that is easily treated with oral ondansetron.

[TinaTina2020 in reply to Catcher910]

Thank you Catcher910 for sharing your story.

[Catcher910 in reply to TinaTina2020]

I am BRCA negative.