As you know we write submissions for NICE and SMC about the patient experience of treatment, and we ask for your experiences so we can include your direct quotes.
This is a general query to help inform the submissions, and also to help with any queries from members around the experience of taking PARPs. We often mention the convenience of being able to take tablets at home compared with IV treatment at hospital but we wondered how you find taking them - are they easy to swallow, how do you manage timings, supply, safe storage (eg away from children) and any other practicalities?
If you could let us know your experience of managing PARPs at home (and ideally which PARP) that would be really helpful.
Many thanks as always for your help.
Best wishes
Anna
Ovacome Support
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OvacomeSupport
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I am on Niraparib and find it wonderful. Taking something which will hopefully hold back the cancer is great. It gives me hope, as opposed to the watch and wait plan which had been suggested by my previous oncologist. I take them after breakfast and have had very few side effects. There are no special storage instructions, so no problem there. They are delivered by special courier the 80-odd miles from the Freeman at Newcastle to my home. Sometimes they arrive only just in time and I ring to check they are on their way, but that is no great hardship. I find the whole system wonderful and am so grateful to be on a PARP.
I am on Niraparib and find them really easy. They don’t have special storage (only not taking them out of the pack before I take them). I get them delivered from my hospital after my bi-monthly telephone consultation. I do struggle getting the 2nd one down but I’d rather that than having to go in to have drugs!
Hi I have been taking Olaparib for 7.5 years under a trial. I get 3 months supply at a time. There are no special storage issues, I take pills twice a day, 12 hours apart with a 2 hour window either way if needed. The tablets are easy to swallow due to being a 'caplet' shape. I find taking them is no different to taking any other regular medication.
Suzanne's experience is much the same as Kathy's, just that she has been taking olaparib for "only" 3.75 years and she is not on the trial. She gets 8 weeks' supply each time. The only issue is sometimes the need to chase up the hospital pharmacy, which can be stressful if she is running low.
I am on Rubraca and have no issues with taking it. I take it twice a day, twelve hours apart. I have set an alarm on my phone, to remind me at nine am and pm.The only issue is that the hospital pharmacy ring me to collect the Rubraca at no particular time each month. (by drive thru) As I get to the end of my month's supply I am afraid to go anywhere in case they ring, as they are waiting for the oncologist to ok the prescription. I run out of tablets tomorrow, so will have to phone and chase them today.
On OlaparibBecause they can give a spell of fatigue take one lot just before bed so sleep through.Make you sleep really well !! Means the morning dose is latish which is a bit of a nuisance sometimes but mostly as I’m hopeless at remembering to take . Tbh the monthly efforts to get this can be taxing , first get blood done , wait on tenterhooks for phone call to find out if platelets holding up, get go ahead hopefully. Negotiate with pharmacy for release of tablets. If you get missed off a list , which happens if someone doesn’t press go , 2 days of chasing . Anyway I don’t like to moan as everyone doing best in difficult times and these ‘magic pills ‘ are giving me a period of almost normal life . Oh one more big drawback for me , no alcohol! They say have an occasional glass of wine , but makes me feel rubbish!
I have been taking Olaparib for just over a year. It is a very good drug, easy to take , no side effect for me and hardly any visits to hospital. I have my blood checked at the GP's each month ,followed by a phone call and then I am able to collect my tablets from the Chemo van at one of the hospitals fairly near to my home. During the lockdown volunteers delivered them to my home.
As my oncology centre is about 30 miles from my home (rural) being able to collect them from the chemo van has made a huge difference to me. When I was having chemo at the hospital it involved two full days each month
Hi, I’ve been on Rucaparib for approx 1 year but I don’t feel it’s working as my CA125 has risen from 4 to 1324. Taking the meds isn’t usually a problem just 12 hours apart. While taking these meds I seemed to have piled on the pounds and my hands are swollen and red and my face is sensitive to the sun despite using spf 50. My stomach is distended again therefore the tablets aren’t so easy to digest and I am experiencing acid reflux which I’m sure will go when the fluid is removed. I don’t feel this med works for me but I’m heartened to read all of the long remissions with the other ladies taking Olaparib, hopefully I will be given a more effective drug. Getting a 4 weekly GP bloods appts throughout Covid has been a challenge having to ring 5 times a month for an appt.Parp inhibitors if they are affective would be far preferable that having aggressive Chemo.
Thank you for sharing your experience. I'm sorry to hear about the side effects and that rucaparib may not be effective for you. I hope your team are able to confirm what is happening for you soon. If there is any information you need or anything you would find helpful to talk through, please do get in touch with us. The supportline is open Monday-Friday 10am-5pm on 0800 008 7054 or email us on support@ovacome.org.uk
HiIam very new to taking Niraparib at home. Iam on week 3 and have had a 2 telephone consultations with my oncologist. My blood results were normal on the first consultation, but yesterday the oncologist had said my platelets had dropped from 240 to 120 and he would be monitoring it in case they had to lower the dose. Apparently over 100 is normal.
The side effects are copable with at the moment .
They are nausea, headaches, sleep disturbance and my skin is very sensitive to sunlight.
I take the tablets in the morning between 8.30 and 9.30. This is to try and minimise the sleep disturbance.The capsules are quite big and I only swallow one at a time because I find 2 tablets too much . I also take Metoclopramide as an anti sickness. I take 3 a day spaced out from 8.30 in the morning. Occasionally I’ve only needed to take 2, but I’m careful to keep taking them as I don’t want the nausea to take over.
I don’t know if this is at all relevant butI make sure I drink 2 litres of fluid every day. I have a Stoma and it’s definitely a little slower at the moment .
My CA125 was 11 at the start and it’s now 10 but again there may be no link to the Niraparib..
Iam a bit slower in the morning but I this may be due to the fact that from about 4 am I wake up and then sleep is intermittent.
Doing my best to keep active ie. I walk the dog for an hour every day, and play tennis twice a week. ( although sometimes I feel I don’t have the energy but I make myself go !)
I don’t know if this is all relevant but I hope it’s of some use !
What dose are you on? I started at 200 then put up to 300. My bloods crashed on 300 and I needed a transfusion, back to 200 and has been all ok since August 2019 x
I am taking Olaparib. It is working well. Chemo got my CA125 results down to normal levels, but Olaparib has kept them there for the last 6 months. I do have slight issues with my digestion after swallowing them, but this might be because I also have Parkinson's Disease. But really, this has worked well. I send a friend to the hospital to collect them for me. I am very grateful! I would be happy to answer more questions if you have some.
I've been taking olaparib for several years.I take 600mg per day, 300mg in the morning and 300mg at night.
I take the pills rather than the capsules.
I find still water by far the best thing to drink when taking the pills.
I take the doses roughly 12 hours apart but I don't fixate on this - I've always understood that that there is a 2 hour window either side.
I have have occasionally missed a dose and I would not take them if the 2 hour window had passed.
I also took a double dose by mistake once and totally panicked. They saw me straight away in clinic and had my obs done and there were no obvious side effects. Once I had calmed down, I did not feel any different.
I keep a log of EVERY dose I take so that I can check if I have missed a dose.
I generally try to have eaten something before I take the pills but not too much ( a huge meal would slow down the drug's action I think).
I never have a problem taking them in the morning but in the evenings, the pills can be a little harder to swallow and I sometimes get a bit of acid reflux. This usually passes (chewing gum helps).
I always keep the lid fully screwed down if I'm travelling or around children.
In my experience, taking this drug at home has been extremely convenient and doable and there are no major negatives other than remembering to take them.
I've been on, and off, Niraparib since about October last year. Started on 200mg dose daily and it worked brilliantly, driving down my CA125. But, within weeks, I had ridiculously high blood pressure and high heart rate - cue weeks of on and off the drug, trying different meds to control blood pressure/heart rate, but unfortunately, we finally had to settle for the lowest dose daily. Even then, my blood pressure is much higher than it used to be, but not at dangerous levels.
I find it easy to swallow, and I'm not great swallowing pills - I do find it quite difficult to get the capsules out of their blister pack without completely squashing them though, that has to be done carefully. Other side effects - inability to sleep longer than about 4/5 hours at night, meaning I nod off on the sofa every evening, constipation requiring Movicol daily, more arthritic pain, and my hair has been falling out - not sure if that's to do with the drug though.
Hello, I have been on olaparib around 4 months now after chemo ultra radical surgery and more chemo. They are simple to take like paracetamol really.12 hours apart as instructed and after food Get a call from oncology pharmacist each month to check how I am. And pick up from the hospital as I am going in for magnesium infusion at the moment however when that's at correct level can have them delivered. Bloods have been good am drinking 2litres of water a day as advised. I have had very few side effects the odd time felt nauseous if food doesnt sort then I take anti sickness tablets. Taking tablets much easier to manage than hospital visits! And you feel more normal!
I started on Olaparib in October 2020 dose 300mgs twice daily . After a month I became extremely exhausted although my bloods all showed normal levels. I had 2 weeks off the meds to see if I improved - which I did. My dosage was then lowered to 200mgs twice daily and I've been on them ever since. I've had no side effects except for occasional mild nausea which has been manageable without additional medication. My CA125 has been stable at 9 for 6 months. My bloods have all shown normal levels. They are easy to swallow and I set my phone alarm to remind me to take them. My energy levels are good, I did go through a period of low mood and mild depression but wonder if that was due to lockdown and the poor weather we've had. My only problem is I have my bloods taken every 4 weeks at local GP, a phone consultation but the have to travel 20 miles to pick up meds, I have to rely on a family member to take me. They obviously don't mind but I hate having to ask - I can be too independent on times lol. Anyway after 9 months I am feeling good and Olaparib appears to be working . Lucky me 😊
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