Niraparib

[Angie1412]

Hi ladies i have just finished carbo/caelex after 1st recurrence and now have been offered niraparib. I have been given some information but there seems to be a lot of possible side effects. I would love some feedback from you lovely ladies so that i have some details to discuss with husband and daughters. Angie

[Rachael47]

No information as yet - just had 1st carbo/taxol but have been told Niraparib may be the next step. What did your post chemo scan show?

[Angie1412 in reply to Rachael47]

Thank you for your reply. My original scan showed peritoneal cancer in October 2016. I had hysterectomy and debulking followed by carbo/taxol/avastin. It reoccured towards end of Avastin in January this year and was put straight on carbo/caelex. I had my last one yesterday and have a scan booked for Tuesday. My mid scan showed no evidence of cancer. Fingers crossed it will be the same next week. Hope you are not finding chemo too bad. I found fatigue the worst side effect with taxol as well as losing my hair. Good luck

[Mariahmd in reply to Angie1412]

Angie what my doctor prescribe for me was Zejula which is a inhibitor also after going through what your going.

[CallmeMum]

How did you get on with Carbo/Caelyx? My reason for asking is with the experience my special person had it’s similar side effects to the Caelyx xxx

[Angie1412 in reply to CallmeMum]

Thank you for your reply. I didnt find side effects too bad. Usual fatigue, sore mouth, thinning of hair and had to have a blood transfusion after 5th and my 6th was cancelled last week for low white cells. Cant win. They gave it to me yesterday although they were still low but i have got to have three injections to bring the levels up. I have just spoken with my macmillan team about these new drugs but they could only read out of the booklet the rep left as they havent seen anybody on this treament yet.

[cathy14_devon]

Hi Angie, been on this since last nov, on 3 tablets at first which made me feel but sick so reduced to 2 a night. Occasional nausea and hypersensitivity to sunlight only probs. Get tingly skin anywhere forgotten to apply sunscreen. Small price to pay for keeping a third lot of chemo away. Have to make monthly visits to hospital to pickup next month's supply of tablets if bloods ok. Hope this helps. Cathy

[Angie1412]

Many thanks for your reply. I havent been able to go out in the sun due to caelex and i am suffering with swollen feet. I will have had my week in dorset before i have to decide what to do.

[Numi]

Hi. I've been on Niraparib since last October. I'm on 3 capsules a day. Had some nausea and headaches in the first couple of months, but not debilitating and they've gone now. My blood pressure and cholesterol have increased, but that's being treated. I'm extremely sensitive to the sun - my skin stings if I'm in the sunshine for long, despite Factor 50. On the plus side, my CA125 has decreased steadily all the time and is the lowest it's ever been. I feel well and I'm active - doing exercise classes with Cancer United, a local charity, singing in their choir, walking my dog, socialising with friends and family - overall, loving life and the opportunity this drug has given me.

The list of potential side effects is terrifying, but as everyone of us is different, we all react slightly differently and the only way of knowing what might or might not happen is to try it. All the very best.

[Angie1412]

Thank you for your reply. Sounds very positive. As you say you wont know whether it works or side effects if you dont try it. Have a good weekend. I wish the temperature would drop as i am suffering now!!

[Hidden]

I had virtually no side effects with it and in fact felt rather better than I do now now I'm off it.

It IS tough on the bloods and my advice would be to do everything possible to boost them. They do tend to settle down I think.

None of the drugs we get given come without a lengthy list of possible side effects. It's not wise to read them, in my experience, as we never know whether or not we'll be affected.

I do it the other way round, and only if something does seem out of the ordinary check whether it's on the list or not. Eccentric as this method is, it has worked for me and has avoided the risk of "seek and ye shall find"!

[Angie1412]

Hi thank you for your reply. I am glad to hear your side effects were minimal. They didnt say how long i would be on it for! How long have you been off it and has there been an improvement? Take care

[Hidden]

I was on it from September 17 to June 18 with a couple of time outs for blood counts.

You are on it for as long as you don't have disease progression - it's for maintaining your current state - and that length of time varies for each of us and is unpredictable.

If I'm honest it may be that the prospect of weekly taxol is not helping my mood, as I generally am very well. Even though I have overdone it cutting down trees!

Being on the Niraparib felt like normal life. Weekly hospital trips won't! The prospect's always worse than actually getting started, I find.

I hope it goes well for you.