Holiday and Niraparib 😎😎

[SuziTench1]

Hiya all , Well , ive been away after 3 remission carbo /gem , I found that one the hardest .. but im ok and always thankful of everyday . This is a pic of my hubby and myself with the owner of the restaurant who felt the need to be in pic rather than taking one of us 🤣🤣🤣😎😎😎.I start Niraparib today any hints or beware offs? .. always stay happy and enjoy all you have xx😍

[delia2]

I don’t have advice but glad you’re in remission and that you had a holiday!

[SuziTench1 in reply to delia2]

Thank you x

[mrstadpole]

Lovely photo .Pleased you had a great holiday x

[SuziTench1 in reply to mrstadpole]

Thank you .. we did xx

[Doglover1410]

Great photo and glad you’ve had a good holiday. Been on Niraparib since end of April. Started on 200 no side effects, CA125 ok. Put on 300 but bloods couldn’t take it so had transfusion and 3 weeks off. Back on 200 and today had my 4 week check after weekly bloods and all good 😊 the past 4 weeks have been stressful checking bloods but happy tonight!

I take mine in the morning, then if I go out for an evening haven’t got to take tablets!! Bit of tummy ache and a really strange dream/nightmare at 11.56 every night but can never remember what it’s all about when I wake up (this is normal apparently!)

I think it’s just healthy eating, exercise (I only walk/swim but every day) and LOTS of water.

Message me if you need, good luck xx

[SuziTench1 in reply to Doglover1410]

Thank you for your reply and advise . I will contact you if needed . All the best on new regime xx

[Cheryl4677 in reply to Doglover1410]

My dreams are sometimes scary but I do seem to be travelling the world!

I’m on the ICON9 trial since June. My bloods have dropped and I needed transfusion - three times now. Hoping I’ll settle down.

[organicinna in reply to Cheryl4677]

Yes ! strange weird dreams started to happen to me too )) But most of the time can not remember what was all about just a flavour of it...

[Maxjor]

I was on a different PARP and they say they are all the same but a bit different. I have read so many different side effects from different people (there is a PARP site on Facebook if you're on FB where many discuss the effects or have or answer questions) but for me, it was better than being on chemo and the side effects were manageable. Wishing you luck and that you stay in remission, period! oxoxox Judy

P.S. Pretty funny picture with you pointing to him too!

[SuziTench1 in reply to Maxjor]

Thank you will have a look on fb too. All the best .. xx

[Numi]

I've been on 300 mg Niraparib since October 2017, and I'm doing ok. It can give nausea in the first couple of months, but it does pass and you'll be given medication to deal with it. I can't remember when I last had to use it. The patient information leaflet gives a terrifyingly long list of potential side effects, but they're just covering every possibility, however unlikely, so don't worry. One thing that happens to many of us is becoming extra sensitive to the sun, even in the UK - factor 50 from spring to autumn and hats in the summer for me. It can make you a bit constipated, so a lot of fluids - 2 litres a day or more are a good idea. I ended up with a stoma after my surgery, so I have to be extra vigilant. I take mine at night as per the manufacturer's recommendation - I think it's recommended to avoid any nausea disrupting your day. I do have trouble getting to sleep at a reasonable hour - but that could be bad sleeping habits I've developed over time since being on chemo. It's tempting to think every little thing that isn't quite right is down to the medication. My CA125 came down from 50 after chemo to around 20 on Niraparib and has been stable for a year or more. I'm so glad I've had the opportunity to get this drug, and I hope it goes as well for you. x

[SuziTench1 in reply to Numi]

Thank you Numi for the great advise . I am one of those who are thankful for everyday and everything so side effects dont scare me.. as I deal with them if or when they happen . Thank you again and heres to the NHs and Niraparib.. hoora 😁😁😃xx

[Katiebairdie]

I was told to stop taking most of my supplements, fish oil and turmeric spring to mind. Also to keep out of the sun and keep my head covered when in sunshine. Not to difficult at the moment. 🙁

The only side effects had was that I lost half a stone in weight. 😀

Good luck with the treatment.

[SuziTench1 in reply to Katiebairdie]

Thank you Katie, weight loss not a bad thing 🤣. Take care too xx