Well, despite my ca125 rising to 35 from 15 and my neutrophils dropping again, I luckily still just about fit in the criteria for Niraparib. I swallowed my first two capsules last night and am keeping everything crossed that they will do their work and that my body will be able to tolerate them. The thought of no foreign travel, no sitting in the sun and not even the odd gin and tonic doesn't fill me with joy but at least I did have my lovely Turkish holiday.
Sending love to all of you lovely ladies out there. I hope you are enjoying the sunshine today xcxxx
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Welshandproud
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I was on a PARP (Olaparib) and no restrictions like that--I traveled internationally. Maybe its just until they see how you are doing blood and otherwise? Some people are on them for years so it seems strange you are being told no foreign travel. BUT--if it works--that is #1 and wishing you lots of luck and minimal if any side effects. oxoxox Judy
Thank you Judy. So glad that Olaparib has been good for you. Yes my onc wants to see how my bloods go and I have suffered with low neutrophils in the past. She thinks this is likely to be the case again and there's also an increased risk of DVT. She certainly has told me to avoid foreign travel for the foreseeable which is quite a blow. I can't even have a little g and t to cheer myself up because of the risk to my liver. Never mind. If it works it will be worth it xx
Hi, I’ve had it since April and have had drinks,parties, trips abroad. He seems fine as long as I tell him and I get the ‘rules’, hopefully this is just for your first 4 weeks.
I have my appt tomorrow, have been off them for 3 weeks due to low red bloods but desperately want to get back on them! I was up to 300 but clearly was too much so hoping back to 200! Absolutely no side effects, that’s why it went up to 300!
I changed mine to the morning so if I was going out I didn’t need to take tablets whilst out!!
Thanks for that. You've made me feel much better. I am so nervous about my body's ability to tolerate it as I had to stop avastin and Caelyx due to the nasty side effects. I really do hope that I too can have a full life on them. Good luck for your next batch of tablets and recovery from your blood problems xxxx
Oh I'm sorry. That really is quite a jump and so unfair when you've been feeling so good on it. I hope they can offer you something else to bring the numbers down. In the meantime really enjoy your trip xx
Just a quickie to wish you the best of luck. Do hope you settle and can continue the treatment. Sad not being able to have even a G and T, let alone go on foreign holidays, but hopefully worth it in the long run. The strong pain medications I'm on stop me from being allowed alcohol and I'm so surprised how I hate not being able to have a glass of wine!! I don't drink much so didn't think I'd care - but I do!
Thank you so much Solange. You know just how I feel with the alcohol. It's not that you want a glass of wine all the time but it is a different story when you can't have one at all. Still let's hope it will be worth it for both of us xxxxx
Very best wishes for you on the Niraparib . I asked the Oncology Pharmacist , as I enjoy a glass of wine , & she said it was fine . So perhaps it’s just initially as your body adjusts . You certainly get a lot of monitoring . .
Once I was stable on it , I was able to go abroad so fingers crossed for you .
Wishing you every success! Surprised like Judy re the no travel! As you know Im on Olaparib and travel at least 3-4 times a year, one of those trips always being long haul. Must be the difference in the parps because I have no restrictions on alcohol either..... mind you Im not really sure my 2 a year counts lol. Hopefully you tolerate the drug well though and it does the trick! Kathy xx
Good luck and fingers crossed all goes well. I can no longer drink alcohol due to the disgusting taste in my mouth Olaparib has given me. As you say even when you only like the occasional glass, when its no longer available you miss it. Also affects my husband as he doesn't like to drink alone. But we both realise small price to pay.
Thank you so much and I'm sorry that the Olaparib has removed the pleasure from a glass of wine for you (and your husband).Yes you're right. I must keep that in mind. If it's doing the trick then it's worth it xx
Good luck on the Niraparib. I have been on it for 2 years - consultant says foreign travel ok, sun was a bit of a shock at first but find factor 50 and a hat works for me, G&T works for me too!
Thank you Elizabeth. I'm so glad that it's working for you and that foreign travel has-been fine. I'm more than happy to use factor 50 if it means that I don't have to give up my holidays xxx
Wishing you the very best! I have been on Zejula for one year now. Went from 200 to 100 and now back on alternating every other day 100/200. Other than the dropped platelets (which are now fine) the only thing I experience is for my lack of desire for alcohol. Very strange. I'm not a big drinker, but, do like a glass of wine here and there. The smell of wine makes me gag. I had asked my onc if drinking would interfere with the PARP and he said no. Then my GP said it's best not to drink just to protect the liver. I think key here is moderation. I have developed a taste for Margaritas and will have one or two on a Saturday.
Even if you have any small side effects , they will go away as your body adjusts. It's the constipation to stay ahead of with plenty of water and softeners. You will get frequent blood tests to monitor platelets and all others.
Thank you Marisa. It's interesting that different Doctors have different opinions on this. Yes I agree that moderation is probably the answer.
I am so pleased to hear that your side effects have reduced during your time on Niraparib and thank you for your advice about water and softeners. You enjoy your life too Marisa. Thank you xx
I hope it works for you! I've been on it since december with a ca125 of 977 and as of july, I'm at 36.4 with NED. Keep the faith! I never heard you can't travel or have a drink though, maybe because your neutrophils are low?
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