Im hoping my years journey is coming to a more positive end/beginning. 7 weeks ago I had the big op removing all ovaries/womb all the cancer cells that could be seen and now am interested in finding out as much about the maintenance drug Olaparib.
If any of you reading this are also using this drug could you please let me know how you are finding it?
I know we will all experience different effects but after a year of filling my body with unwnated but yes helpful drugs I would like to get my body back into a more normal heathy state.
Thank you Jules
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blackcat29
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Hi jules I have been taking olaparib for just over a year with avastin only 2 more treatment of that but another year on tablets I have been OK taking the olaparib the only side effects with them for me is tiredness I have hgsoc 3c I had a scan Oct and there was no NED which was amazing I had debunking surgery with a stoma Nov 2022 with 8 rounds of chemo I hope that it works for you sending love to everyone on this crazy journey
Wow there are so many of us! Again thank you so much for your reply and advice. Happy New Year and yes I already feel more positive about taking the drug.
I am also BRCA 1+ and took Olaparib between 2021-23.
I would suggest you look at the rules for getting Olaparib paid for by the NHS and make sure you will be able to get it at a later date if you turn it down now.
Olaparib is gold standard maintenance treatment and is very expensive but it was designed for us BRCA + people. We are very lucky to have it!
Personally I had very little in the way of side effects and was on the maximum dose. Sadly it didn’t work for very long for me but I was already second line by the time I had it.
You might also want to look up Katmal on this site as she’s been on it for years and has not relapsed. I think we all wanted the same!
In the end the decision must be right for you but do talk to everyone you can before deciding xx
Thankyou and yes I understand it is a revolutionary drug, I have started taking it this morning and am v encouraged by all your responses. Good luck and Happy New Year
I’ve been taking the full dose of Olaparib since November 2022. When I first started taking it I did experience some nausea. I’d say it took about 4-5 months for the nausea to completely settle. I found that taking the anti sickness medication Metochlopramide 3 times a day initially, then gradually reducing the frequency, then only taking it when nausea began and finally stopping it completely worked for me.
Other than that I’ve had no other side effects.
If being offered Olaparib is an option for you I’d grasp it with both hands. Dosage can be adjusted if side effects are not tolerable
Hi. I have been taking Olaparib for 10 years now on a trial. I take full dose of 600mg per day. It is the third drug I gave trialled since my diagnosis of 3b HGS OC BRAC2 and by far the easiest. I get very little side effects and for a woman of now 65 I feel really good! Good luck. If you have any questions, feel free to ask. Kathy x
One of my doctors called Olaparib a "game changer", so who would turn away the chance of a game changer for cancer patients? I was diagnosed 4b two and a half years ago, am BRCA2.
I had carbotaxol and a very big op, and this week I am finishing two years of Olaparib. My recent scan showed NED. "Crack open the champagne", said my doctor at my December 23 consultation.
I think side effects of Olaparib are very individual. At first, I was put on 600mg per day but I am small in stature and that gave me anaemia and I had to have blood transfusions. Eventually, the dose was reduced to 400mg per day and that is where I have stayed for the last 18 months or so. No anaemia. I do take Spatone iron supplement every day.
I have had only one side effect that has been long lasting and that is a form of neuropathy (doctor said there are five different types). My legs are wobbly, so, although I walk for an hour every day, I have to use a stick. It is not painful but I do look drunk. I have congenital Ehlers Danlos, a muscle condition, and I think this predisposes me to this side effect. Once off the Olaparib, the nerves may slowly repair and this walking difficulty may improve.
So, I would give a big vote in favour of Olaparib. I was told not to have Avastin with it, maybe because of my Ehlers Danlos.
The Mayo clinic website has a comprehensive list of side effects of Olaparib. I would still vote in favour of it. With all good wishes, Emma
Hi. I took it at a reduced dose (400 then 300 mg) for three years after first recurrence. I found the initial side effects difficult and the fatigue persisted but it was well worth it. It saved my life and I’m still ned after stopping it a year ago.
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