Hi I was diagnosed last May with Primary Peritoneal Cancer, I am 67 just retired, very fit and healthy, the diagnosis completely floored me as I had had no symptoms at all , I thought it was a tummy upset so went to the doctors who did blood tests and an ultrasound this showed my CA225 was raised at 45 they were not concerned but did the tests and I had stage3 peritoneal cancer.
Up to now I have had 12 rounds of chemotherapy and the debulking surgery last December, everything went well and I have now started on the Niraparib 200mg which I take at night , so far I just have fatigue which I am finding hard I just want to feel energised,
would be good to hear of any patients good or bad experiences of this medication.
Hello there, yes I have had the same sort of cancer ( I'm 66) and had the debulking surgery in June followed by 2 more rounds of chemo (having had 4 rounds before the op). My CA125 on first consulting doc with bloating was 615. Before chemo it was 1771 (now 8) & after all that I was then put on the Niraparib as a 'maintenance' drug. This made me very very sick , so the dose was halved but I still could not manage the sickness so I am now off it altogether and just hoping the cancer doesn't come back. I do have incredible fatigue still in spite of stopping the Niraparib at the beginning of Jan. If only there was a way to bring back energy and endurance. I have a brief rest after lunch every day and am knackered by about 6pm. Very dull. No-one seems to know how long it will last and whether it is just a reaction to the really tough year of surgery and chemo, or the chemicals still lingering in my body. I can walk for ages but if there's the slightest incline my legs are immediately absolutely heavy and exhausted. I am still sick but it passes quickly now and it's only about twice a week. And only ever in the morning.
So basically the Niraparib was not bearable for me and now I am off all cancer meds and hoping the fatigue will just slowly get better. I am confident it will!
I have a friend who had exactly the same treatment as me for the same cancer and she is doing fine on a half dose of Niraparib (halved because she was very sick). She does sometimes get tired and need to rest but she does not have fatigue. And although she had exactly the same cocktail of drugs she had different side-effects from the chemo too. It seems everybody is different.
Good luck with the Niraparib. I wish I had been able to tolerate it.
