On Olaparib for2 years now . It’s been amazing at holding the cancer as I’ve never been disease free and I have managed the side effects well . But I’m finding my energy levels much more depleted lately and I can sleep at any point in the day given the opportunity. Bloods ok last week . Anyone else experiencing this ???
Hope everyone ok following the storms
Jennifer
Hi. I have experienced this. Last July my oncologist told me to go off the Olaparib for two weeks and see if I felt better. I did. She put me back on a reduced dose. It helped but I have just been going through a similar time only feeling it as depression and she told me to take a break again so I am. It’s worrisome to take these breaks but also refreshing. When I come back from my holiday in St. Martin I will try counseling.
Thank you for answering. It helps if you know someone else experiencing same things . I’m normally a very ‘up’ person, but at the moment I’m struggling to find enthusiasm/energy for anything. But I can’t share this with family/friends . I do think the feeling of fatigue is more physical than mental ? Hope you are having a lovely holiday
Jennifer
Hi JenniferWhen i was on niraparib it dropped my vitamin B12, a few injections later and i felt much better. Never had low b12 once i came off it so pretty sure it was the parp. Also i now have low vitamin D and since GP started me on replacement i feel amazing, joint pains settled and my energy levels are much better. Both these bloods are not usually done as routine.
All the best
Diane
Brilliant ! Thank you . I was wondering about nonroutine blood tests as my diet is rubbish . Since chemo I can’t eat fruit and veg , and PARPs put you off meat . I shall start some supplements and see . Thank you very much Jennifer
Hi Betty/ How do you know your bloods for vit B12? Because I don't think our RM checking for vitamins deficiency/ I once ask them > they said GP should check vits ? we not doing that/ But GP is not going to do it foe me every month < would they?
Hi there, B12 drops slowly over a period of time and if its ok then probably unlikely to change is my understanding. Bowel surgery ie removal of parts of the bowel can reduce absorption of B12 but mine was almost certainly parp as its not been low since i stopped it. If its found to be low they give a loading dose of injections and for me they repeated the blood after 3 months and 6 months and both were normal. As i had stopped the parp then its not dropped since. Hope that helps x
Forgot to say GP did all this not oncologist
ok thank you dear xx i ask GP again ))
Hi Jennifer I have been taking Olaparib for 19 months.I have felt really well so far,no side effects and Ca125 around 4 or 5,BRCA 2+.When did you start to notice the change in your fatigue? Did it happen slowly or fairly suddenly? Thanks.
Well I think it’s always made me feel tired , I take my evening dose just before I sleep for this reason . After I take I can sleep for 8 hours flat out , . In the day I have to work through it, once I’m active it is manageable and I do loads of activities. But recently that is harder to do , I struggle with motivation?? Hope this explains ? I’ve always been on a reduced dose because of kidney function. I’m not planning on giving up as this is all that is keeping me going , just wondering if there’s anything that others have noticed/solved . Bettyxxx had some ideas .Glad you are doing well, it is a miracle drug . There’s always swings and roundabouts with these treatments
Jennifer
Thank you for your reply.It is certainly keeping me going too!
Hi Jennifer. I’m 21 months into Olaparib and been fine until lately: I nod off for no reason, yesterday evening in a packed lecture theatre! Bloods OK. I’m am now worried about coming off at 2 years which is looming. I’m considering lowering my dose now, without Onc knowledge to stretch out my Olaparib a bit longer as I am aware not all of us are on the full dose. But thats probably not a good move. Are you coming off at 2 years too?
Hello RoseMS,
I am sorry to read how worried you are feeling about ending your treatment with Olaparib. I was wondering if you have been able to discuss the length of your treatment and your concerns with your clinical team? A conversation with your clinical team may be able to provide you with advice about this based on your own individual circumstances.
As you suggested, it is really important to take medication as prescribed and not to adjust the dose or length or treatment with olaparib, or any other prescription medication, without the approval of your doctor.
Please know that we are here Monday – Friday 10am – 5pm if you ever want to talk things through. You can contact our support services by calling 0800 008 7054, emailing support@ovacome.org.uk or by sending us an instant message through our website.
Best wishes,
Cathryn
Ovacome Support
Hi CathrynSorry been out today so delay replying . I can stay on Olaparib for as long as it works because I have never been disease free , which I think is the general rule . It seems daft to take you off something working well for you , but I guess your onc will do scans etc to check all is well with you first ??? I think that there is a protocol from nice on this ????
The falling asleep bit made me chuckle , sounds exactly like me .
Hope you manage to get this sorted, horrible to worry
Jennifer
Hi there, Very interesting to hear other people's experience of fatigue - I definitely suffer from it. I've been on Olaparib for about 18mths (dose was lowered from the original 600 to 300mg a day, which I'm now on, and I am BrCa1). My energy levels are often rock bottom and the main way I cope is to have at least an hour's sleep after lunch; this gives me a "2nd wind" for the afternoon and evening. By the way, this does not stop me sleeping at night, in fact I often sleep better after a good afternoon nap than I do when I have to go without one!I also think that sometimes mild depression can make you feel "tired" (or tiredness can make you depressed - it's a chicken and egg thing) but you just have to allow yourself to wallow in it, as it will usually lift if you allow your body to rest. Take care everyone,
Thank you for your experience. Fatigue does definitely seem to be something that a lot of people have on Olaparib . Just managing it the best we can I guess , for each individual. Maybe some spring weather will help , hope you continue to do well Jennifer
Hello Jennifer,
Thank you very much for your post and I am sorry to read how your energy levels are depleted at the moment. I was wondering if you’d had an opportunity to speak with your clinical team about how you have been feeling recently. There may be things that they can do to help you with this. It is also always advisable to speak with your team if you are considering starting supplements to ensure that they won’t interact with any treatment that you are receiving.
I can see that you have already had many helpful responses from members of the forum community sharing their own experiences. We also have a booklet called ‘Managing Fatigue’ which may be helpful. I will share a link here if you haven’t already come across it: ovacome.org.uk/fatigue-booklet
Please don’t hesitate to get in touch with the support services team if you would like to talk anything through or if we can help with any further information.
Best wishes,
Cathryn
Ovacome Support Services
Thank you , don’t worry I would always check , but have discussed those mentioned with team before Thank you for your helpful message
Jennifer
Storm is no good for us ! )) We all here i think thriving better with lots of sunshine and mild weather. No sunshine - am deepest. Sunshine - am alive again ! )) Sorry can support you with your question cos am on Niraparib only for 2-3 month but seem to be OK so far xx
Thanks for your message . Hope keeps going well for youMore sun definitely helps
Jennifer
Are you brca. Hugs from paris
Hi Jennifer, Thanks for your post , I am on Olaparib, and can fall asleep at the drop of a hat
. I thought it was age related as I am almost 78. I do get some nausea and lack of appetite especially in the evening. Meat doesn't appeal to me at all , neither do vegetables or salads . It is a relief to hear I am not the only one . I had a nasty bout with covid and havnt been the same since , now on extra vitamins.
Your post definitely helped me , thanks .
Gillian Mookie fox 1234
It has been so useful finding others who share the fatigue thing.. I also have similar dietary effects as you . Maybe being older doesn’t help either ?? Really sorry to hear about the covid , hope you continue to improve from that , you don’t need added problems!!!Take care
Jennifer
Thank you ! We can't figure out where I picked up covid since I haven't been out except in the car . No visitors etc . I got a really bad dose just after Christmas.still dealing with the after effects . Thank goodness I was fully vaccinated and boosted , so no hospital . I just go from day to day , if I want to sleep , I sleep . Thank you Jennifer Gillian, Mookie Fox 1234
I have been on Olaparib since July last year and I am tired. All day, every day. I had a 5 hr 'nap' from 1-6pm yesterday, woke up - cooked and ate dinner, watched some TV and did Wordle with my Welshman, then went to bed at 11pm and didn't wake up again until 11am. It's been a 'busy' week, by which I mean I had to travel to the hospital on Monday for pre-chemo bloods and tests, I had acupuncture on Tuesday evening, and was back at the hospital yesterday for chemo, but still the amount I could sleep is ridiculous. I do try a little exercise now and again because I know it's good for me and is meant to relieve fatigue, but it hurts my joints (already painful and swollen from Olaparib/Avastin combo) and makes me even tireder. It feels like a no-win situation.
Really sorry to hear you are having such a rubbish time at present . Are you doing chemo at same time as Olaparib?? I would think just go with the sleep as your poor body sounds as though it’s protesting . One of my responders said vitaminD had helped with joints .Hope you get some relief soon
Jennifer
Hi Jennifer, It's kind of you to reply when you're struggling with your own challenges, thank you. I do take a VitD tablet every morning but can't really say that it's having a noticeable effect. I'm on Avastin 3-weekly too, and I honestly think the two treatments together are ganging up on me! I am determined to bear it though, I want so much to maximise the time I have left with my partner. I'm so glad that Olaparib is working for you and hope that it continues to do so for a long time yet. Take care xx
Wow, sorry to hear about the fatigue but really promising to hear it’s keeping the cancer at bay. Wishing you the best and hopefully a solution for energy levels!
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