worried about possible recurrence

[Narna1]

I f finished my Platinum and Taxol chemo, de bulking surgery NED June 2022 after being diagnosed in Nov 2021 3C high grade, aggressive ovarian/ peritoneal cancer.

I’ve been on Niraparib for 3 months. I’m BRCA negative.

Recently I’ve been vomiting in the mornings , had tummy ache and constipation, headaches.

My oncologist has taken me off the Niraparib and requested an urgent CT scan.

I am worried but to be honest I’ve had lots of yuk symptoms since taking the maintainance drugs, so I’m not sure what’s going on.

Has anyone had a recurrence so soon after 1st line treatment? How did you know your cancer had returned? What do you think will happen next?

I’m a teacher and have just gone back to work, I’m enjoying it and I don’t want to let my students down again.

[NewtonEmma1900]

I have been lucky not to have new symptoms during reoccurrence, I am still working a few hours but get quite tired.

I was diagnosed last October with stage 3 peritoneal. Following 4xcarbo/taxol/avastin I had debulking surgery which seemed to go well. I then had 2 more rounds of chemo. Although my ct scan showed clear my ca 125 post surgery went up to circa 400 and despite trying avastin as maintenance it continued to rise. I then had a PET scan which showed cancer had spread to the lymph nodes above and below the diaphragm by which time the ca125 circa 1000. Treatment was changed to carbo/caelyx and although early days it’s coming back down. I do hope that they sort out your medication very soon. 🙏🤞 Katy

[Trickysite]

the Mayo clinic website can be a good place to look up side effects of drugs as I found it listed more than other sites. Fingers crossed for you.

[Mai46]

I recurred 4-5 months after frontline. I knew because I suddenly started feeling very full after eating & had big digestive issues. I get ascites when the cancer is growing, which may have already began 4 months after frontline but I didn’t feel it til 5.

im sorry you‘re going through this. It may be the drugs but I guess your onc knows best. You may go on Caelyx/carbol next, which I found a lot easier to tolerate than first line. I didn’t lose my hair & was very active after the first 8 ‘sicky/tired days. Sending you all my best.

[Loorunner]

so sorry to hear you are having these symptoms. I finishes first line treatment in March and have been on maintenance but my ca125 has been rising since August. However there was nothing showing on my scan last months so right now I'm being closely monitored. I totally agree it's so difficult to know whether symptoms are due to the maintenance treatment or a recurrence but it sounds like your oncologist is right on it. I have also heard that the possible next chemo drug Caelyx is easier to tolerate. We will get through this! X

[Alice77]

My experience following diagnosis of stage 3C peritoneal cancer was similar to yours. After the two adjuvant chemo sessions I felt well but started to notice symptoms I had felt before in the early stages...frequent bowel movements, bloating, rapid weight gain. My oncologist dismissed these saying it was too soon for a recurrence. I started taking Niraparib in April and the symptoms disappeared. As you say, the Niraparib itself can cause all sorts of problems, particularly in the early stages. I was vomiting,unable to sleep more than a couple of hours at a time, exhausted and demoralised. It was getting much better recently and a good night's sleep has made a world of difference, but now I have severe neutropaenia as a result of the drug! Life is never simple is it?

The important thing to remember is that your problems could well be caused by Niraparib rather than a recurrence and that worrying is counterproductive. Enjoy getting back to work and focus on the rest of your life. Even if your cancer has come back, and it does seem very early for that to be the case, there are more treatments available and there is no point in stressing about it. Try to keep positive and let's hope you feel much better soon.

[delia2]

Hi. I agree with Alice77 that it could well be the Niraparib. Can you try a lower dose? I really hope it’s not a recurrence. If you do have to have carbo caelyx you might be able to keep working if you could get a substitute for a few days each month. I found it easier than frontline, though not a walk in the park. Good luck! Xx

[OvacomeSupport Partner My Ovacome Team]

Dear Narna1,

Thank you for your post and sharing your experiences. I am sorry to hear of the symptoms and worry that you have been experiencing.

I can see that our members of the forum have sent you some replies, I hope this has brought some support and useful advice.

If you would like to talk anything through or just have a friendly chat, please know that we are here to support you. You can contact us on our support email [e-mail] or our support line on 0800 008 7054, Monday to Friday between 10am and 5pm.

Best wishes,

Sorcha

Ovacome Support

[Narna1]

Thank you everyone who replied, your thoughts have helped a lot. We shall endure!

[Pippasandy]

Hi,I was on Niraparib but sadly it didn’t work for me.

I became Platinum resistant and now I am on Tamoxifen . The side effects to this are dreadful.

I feel weak all the time, my ankles never go down and I bleed constantly.

Sorry, this sounds very miserable but it is and like you if I were taken off it I might feel relief.

Regards

[Narna1 in reply to Pippasandy]

sorry to hear about your side effects. Thanks for reply

[candyapplegrey]

I was diagnosed July 2020, had big op, chemo, then got all clear in Feb 2021. By April, I think it had come back. Could not get hospital to see me. They said it could be scar tissue, hernia etc but it was the cancer. However, apart from this growing lump at navel I had no symptoms.

No experience with the drug you're on though. xx

[Narna1 in reply to candyapplegrey]

thanks for your story, I’ve had my CT scan results on Wednesday. Hope it goes well for you x