Niraparib: First I want to thank all you ladies... - My Ovacome

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Niraparib

NewtonEmma1900 profile image
10 Replies

First I want to thank all you ladies for your responses to past posts but also just reading other people’s post helps to put my own troubles into perspective. Following 2nd line carbo/caelyx and a scan in January which shows that I am now NED my CA125 last recorded at 7. Whilst I am relieved that all has gone well this time - (my consultant apparently had not been hopeful).

I was really hoping to squeeze in a holiday to South Africa whilst I knew I was well, however I have been told I need to start the treatment asap - but no start date yet. So frustrating! I digress, I have read all the notes on the drug but just wanted to ask for any hints or tips for what is to come and am I likely to get travel insurance whilst on this drug? Thank you ladies. 💕

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NewtonEmma1900 profile image
NewtonEmma1900
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10 Replies
TMiPP profile image
TMiPP

Hi Emma

I went to Aus for 6 weeks whilst on Niraparib. No side effects and insurance cost me an extra levy but not at all bad (Insurance With). Don’t be tempted to tell airline as that causes no end of grief - as I found out…

Good luck and I hope the drug keeps the beast at bay for you.

Terri

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Dear NewtonEmma1900,

Thank you for sharing your post and your exciting plans to travel to South Africa.

You may be interested in our booklet on travel which you can find on our website. Please see the link below if this would be useful to you.

ovacome.org.uk/travelling-a...

You may have seen some previous threads on travel advice, but in case not here is a link to some other forum threads where advice around travel is discussed.

healthunlocked.com/ovacome/...

Please don't hesitate to get in touch if you have any other questions or queries. You can call us on our support line on 0800 008 7054 or send us an email to support@ovacome.org.uk. We are here Monday to Friday, 10am to 5pm.

Best wishes,

Sorcha

Ovacome Support

Skyeplus profile image
Skyeplus

I tried to get insurance with Stay Sure and another company that I have forgotten the name of but mentioned on here but was rejected. I was honest and said I was on Niraparib. Good luck with finding one that will insure you and I hope you have a fabulous holiday. I am thrilled for you that your CA125 was 7. I had my chat with my oncologist this week and like you was worried. All good so far, also NED and my CA125 was 6. I was diagnosed stage 4 grade a in August 2021. I completely empathise with you and wish all positive things for you xxx

babs1120 profile image
babs1120 in reply to Skyeplus

I too am on Niraparib and asked stay sure for an insurance quote, I got one with a reference number to ring back when I had booked my holiday, I have booked my flights and villa for September to Rhodes this is all paid for, when I rang the next day with my reference number I was told they wouldn't insure me. I said I was told yesterday I would be but the girl said the gentleman I was dealing with shouldn't have told me they would. Because I wasn't quoted in writing there is nothing I can do about it so make sure you pay for your insurance before you book, Good luck please post if you get your insurance I might try again nearer the time and am going to ask my oncologist when I see her of 1st March if I can travel.

NewtonEmma1900 profile image
NewtonEmma1900 in reply to babs1120

Thankyou. I am so sorry about your outcome with the insurance company. I will wait now until I know how I react to the drug. I have now heard that it will start next week and I have to have weekly blood tests until they know how my body copes with it. 🤞

Alice77 profile image
Alice77

Hi. I found insurance last year but very few companies were prepared to quote. Use the specialists like Saga, All clear, Insurance with, etc and telephone to explain your circumstances. Even if you try price matching sites or the insurer's website you will have to ring them. Not many will offer an annual policy and the price can be eye-wateringly high but for a single trip you should be able to get a reasonable deal. You will also need to explain to many what Niraparib is and that (if this is the case for you) it is targeted maintenance therapy to keep the cancer from recurring. This seems to make a difference to the cost as otherwise is ticks the chemo box with an assumption that you are being treated for an active cancer. Insurance is much more costly than when you have no medical issues but not too bad if you are prepared to shop around..I also discovered that costs vary from month to month and that you can sometimes get a discount or special offer. I got a huge reduction by waiting until a couple of months before travelling. Obviously this is no help if you book a package or flight well ahead but we travelled independently by rail and did not pay for accommodation in advance. I hope this is helpful. Travelling whilst taking Niraparib is not a problem unless you need to factor in blood tests. My oncologist actually allowed me a three week break anyway, which is apparently ok

NewtonEmma1900 profile image
NewtonEmma1900 in reply to Alice77

Thank you for your reply, I will have to delay SA because the first month on the drug requires weekly blood tests which would put me into the start of their Winter - had I know in advance I would have tried to go immediately after chemo finished. I will gets some quotes later in the Spring when I know how I cope with the drug.!🤞

Tulips66 profile image
Tulips66

Hi Emma, I cant help you with your query about holiday insurance as I am not in the UK but I only started Niraparib 300g 4 weeks ago. I took it at night time as recommended but I was nauseous , had dreadful reflux & heartburn everyday for over 3 weeks . I had to make myself eat something I felt so awful & I had doubts about continuing it, but all of a sudden during this week all those symptoms disappeared & I am much better now. I know we all react differently to treatments & you might not have any symptoms but maybe if you give yourself a few weeks on it & then if you are ok book your well deserved holiday. I have been getting my bloods checked every 2 weeks & if all is well next week it will be only once a month so it might be the same for you. Best of luck on it & let us know how you get on & I hope you get to go on that holiday X

patricia54053 profile image
patricia54053

I booked a week's holiday for May, when I tried to get insurance off the scale, cost 3 times the holiday price, I'm on niraparib over 15 months now, just didn't put any meds on insurance, I'm grand at the moment and need a holiday

NewtonEmma1900 profile image
NewtonEmma1900

I don't know why these companies just let us put cancer down as an exemption, we are more likely to break a leg than get suddenly poorly from cancer!

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