I’ve just had a complete response to Carbo/Caelyx for 1st recurrence and am back in remission. I found that regime tough to say the least. Having been off chemo for a few weeks I’ve finally started to feel ‘normal’ again.
Tomorrow I start Olaparib and I’ve suddenly become very anxious tonight. On social media it’s hard to find anyone who doesn’t have awful side effects. I know I’m lucky to be in my position as it could be a lot worse, but I’m so fed up with feeling ill and just want my ‘normal’ to last a bit longer.
Has anyone got any positive feedback about Olaparib?
Hope everyone is as well as possible
Love Marian xxx 😘
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MH500
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I’ve been taking 600mg Olaparib for eight weeks and no problems. Slight nauseous feeling one day on the first week but a piece of ginger sorted it. My haemoglobin is low sometimes and my creatinine levels high sometimes but don’t cause me problems.
It feels marvellous to feel normal now, as I was experiencing a number of symptoms (mainly bowel and night sweats) from lack of treatment / care when Covid-19 first reared it’s head. I have some cramp but can cope with that.
Hi there, I’ve been on Olaparib for 9 months now and generally feel well. I do get diarrhoea quite a lot but it depends on what I eat usually! ( I love salads and high fibre foods but they don’t always agree with me). Nowhere near as bad as having chemo; rest assured!
Hi Marian. Firstly congrats on your recent results. Ive been on a trial for Olaparib for 6 years 8 months........ in remission for 7 years 1 month (approx). Yes Ive had minor side effects, I wont lie. Occasional nausea for which I take a couple of domperidone (make sure you have a supply of antisickness that works for you). I have some loose bowel issues but that tends to be related to what I eat..... onions are a trigger, eating lots of veg is a trigger, baked beans will trigger an episode of urgency. I also suffer infrequent low blood pressure which causes lightheadedness/dizzyness on standing. All in all I lead a good life, work full time. Message me if you have any questions, Good Luck. Kathy xx
Great to hear you are in remission. I too have been enjoying 3 months of freedom since finishing 6xcarbo platin/Carly, & my O.C.inactive!!! Have been refused Olaparib/Niraparib cos still have cancer. Have been today for my bloods & meantime have been taking the Protocol regime( with Onco.knowledge)from COC London!!!! Do you sti ll have the cancer as you are offered Olaparib ? Do hope you cope with it ok, keep us posted, please.Iside X
Thank you for your post Marion. I had my last Caelyx/carbo chemo on Monday (reoccurrence after 4 years). I’ve been offered olaparib and think I’ll start in a month or so. I’m very nervous too after all the online articles/posts I’ve read. Side affects sounded awful. But everyone’s response to your message make it seem more manageable. I’ll stock up on anti nausea I think.
Has anyone on olaparib struggled with headaches/migraines? I’m prone to these and the bone marrow injections have caused lots of these.
Hi Rosie. Not one headache or migraine on Olaparib on over 6.5 years . I understand feeling anxious but the oncologists have to advise you of the side effects, doesn't mean you will get them all or indeed any. Good luck. Please let us know how you get on. Kathy xx
I have absolutely no experience of Olaparib so can’t help in any way, shape or form but I just wanted to say well done on completing the chemo and congratulations on a good response.
I hope the Olaparib does it’s job for you and that your side effects, if any, are minimal and you are able to have some normality in your life.
Hi. I’ve been on Olaparib for five months now after first recurrence. I feel like it’s been a game changer for me after being told I would be on treatment for the rest of my life. I still had an 8mm tumor at the end of chemo and it shrunk to 2mm after two months on Olaparib. If you read my comments on social media about fatigue and nausea it might sound bad out of context but it’s not bad compared to chemo effects. I lead a normal life but I do get very tired and take a nap most days. Then I feel good afterwards. The nausea came and went one zofran a day took care of it. I think it’s gone for good now. Also your doctor can always lower the dose. I started on 200mg twice a day and am staying at that. It’s two thirds the full dose. I think you’ll be fine.
Great to hear you are doing soo well on Olaparib. I have beeen refused it cos I still have cancer but mine has stabilised!!! Am intrigued to understand why you can have it & NICE has refused me? Am at the QE Birmingham which is a great hospital, but maybe different rules apply? Thankyou Iside
Hi. I’m in the US. I have brca1 in my tumor but would probably have been given a PARP regardless. It seems like Niraparib is used more in the UK. The rule applied to me was that you had to demonstrate partial response to a platinum agent to qualify. I think that meant at least 30% shrinkage.
Thank you all. I’m sorry if I hijacked your query Marion. It just seemed so relevant to me.
I only had the last chemo on Monday and I’m at the feeling rotten state. But mentally it is so positive to feel ive done the course of chemos. And both the kids went back to school today. So a double feeling of peace.
Good luck to you all. I’ll come back on the site when I can help others and to ask questions.
Olaparib has been a life changer for my wife Suzanne. She has been taking her magic pills for nearly 3 years now and feels really well. There is absolutely no comparison with chemo. Suzanne suffered a little bit with nausea in the first 3 months or so and her MPV got a little high after around 12 months (not that she could tell), but everything then settled down. Some people do suffer more from the side effects than others, especially in the early stages, but many seem to have minimal and very manageable problems. Hopefully you will be one of the latter and will continue to enjoy feeling normal.
Hi Mh,I've been on Olaparib 4.5 years.My dosage at the start was,8 pills twice daily but it caused anemia.I was reduced to 4 pills twice daily 3 years ago.As with all medications (even antibiotics) there are various side effects and many women do not suffer from the same side effects.
My predominent side effect is back ache and sometimes loss of appetite.It takes a few months for the body to become accustomed to the chemicals.For me it's a price worth paying and I have pain killers for my back.
I went from ,advanced stage four,inoperative and incurable to,having two surgeries and still having a good quality of life.All due to the Oncologist,the Palliative care team at my hospice(I've been under their care for four years) and my gyneoncologist.The support from my husband has been unmeasurable.Hope this helps .xx
After carbo/caelyx I started Olaparib at the beginning of June.So far I have felt really well on them and no side effects at all.My Ca125 results were 7 last week.
I am so pleased as at the beginning of the year I was admitted several times to hospital with bowel problems. I'm BRCA 2 positive.
Wishing you all the best and hope you feel well once you start the medication.
I’ve been on Olaparib for 3 months now, no awful side effects . Feel slightly nauseous occasionally but nothing that an anti sickness can’t sort. Just had blood test results and have enlarged red cells but oncologist not overly worried. I hope you have a positive experience with them, I was very similar anticipating the worst but as my oncologist said they are meant to support quality of life and doses can always be changed to reduce any adverse side effects to keep you well. Good luck xx
I’ve been on Olaparip for over a year and have very few side effects. You could consider sticking to this forum and ignoring other social media.
I have a dry mouth at night and can get a bit tired at times. But I’m back working and cycling and feeling good.
I was supposed to have 6 rounds of caelyx but only had 4 as my oncologist said they didn't really want people going to the hospital for chemo during the pandemic.This was around April/May2020.
However it was during this time I was admitted to hospital with bowel problems and feeling really poorly.I started on the olaparib two days after leaving hospital and thankfully have felt well since.
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