Olaparib side effects?

[Frenchhouse3]

Hi there ladies, I’ve been on Olaparib for around five - six weeks. I find I seem to get diarrhoea around every four days and my appetite has dropped right off ( feel slightly nauseous most of the time ). I’m still eating as much as I can but feel a bit low with it all at the moment. I am very grateful to be on it but wonder how others find it? Denise xxx

[Katmal-UK]

Hi, ive been on it 6 years 2 months. U need to get some anti sickness for the nausea if you havent already got some. The diahorrea will improve but will be affected by what you eat so you will need to monitor to find what triggers it. with me its worse with onions, salad, stuffing, baked beans and a few other foods. Things will improve stick with it xx Kathy

[Frenchhouse3 in reply to Katmal-UK]

Thanks so much Kathy; I think those foods upset my tum also. I find I can’t drink alcohol at all either. I have got some anti sickness tablets but wasn’t sure if I could take them all the time? I do feel very lucky to be on it but I think the trauma of all the treatment last year has suddenly hit me and I started to feel so low. I know I should be really grateful though. Your advice has made me feel much better, especially as you say it does improve gradually.

I’m so glad to read that Olaparib is working so well for you. I’ll keep persevering!

Love Denise xxxxx

[Katmal-UK in reply to Frenchhouse3]

Hi Denise I think if you have the tablets you should take them when you need to but id definitely speak to your CNS for advice. when I was once hospitalised for extreme nausea I ended up on a driver with antisickness pumped in so I do believe if you have them then take them . Feeling sick is quite depressing Ive found. Good luck xx Kathy xx

[WoodyB in reply to Frenchhouse3]

Hi Denise, my wife Suzanne has been on olaparib since Oct 2017 and the side effects have definitely lessened with time. The first 2 or 3 months were the hardest (maybe because your body hasn't fully got rid of the chemo poisons before you start olaparib??)

Like you Suzanne finds that alcohol upsets her system and she avoids high fibre foods as Kathy suggests. Suzanne still occasionally gets (mild) nausea and finds that a very small snack such as a bread stick or savoury cracker helps. I think you will feel better over the next month or so. Good luck, Woody xx

[Frenchhouse3 in reply to WoodyB]

Hi Woody, thank you so much for your message, it gives me lots more hope and confidence to stick with it. I agree, alcohol does make you feel much worse, sadly! Also, high fibre foods are a disaster, I agree! I’ll try and just stick to a little from now on!

I hope your wife continues to have really good health and yourself too!

Denise xxx

[Neona in reply to Katmal-UK]

This gives me so much hope. I have been on ATR inhibitor for 26 months- I think this is much longer than anticipated on the trial. Obviously wonder how much longer it will go on. Have had issues with nausea etc but it is still incredible!

[Katmal-UK in reply to Neona]

Hi, I know what you mean about wondering when a drug will stop working. The longer Im on this current trial the more I wonder about when I will reoccur. This is my third trial drug and the longest remission. The drs are also shocked its working so well and looking at why with help of further research in the form of additional blood tests. I hope at least they can discover why which may help those who come along inthe future. xx

[Neona in reply to Katmal-UK]

Yes same here- extra blood tests to try to find out why it is working. We surely must be helping others in the future.

[LittleMissStubborn]

Hi I've been on Olaparib for nearly 3 months now. I am on the ICON9 trial so also take cediranib. Therefore it's not always possible to know which drug is causing side effects but when I discuss things with my consultant it's Cediranib that tends to get the blame, not the Olaparib.. The worst side effect is the diarrhea which is very unpredictable. As Kathy says monitor what you eat to see if any particular foods trigger an attack. I've started to keep a diary to see what might effect me. I find it's not just food but stress levels. So harder said than done with this disease but unload what doesn't matter. I also don't drink alcohol. My consultant just tells me to take immodium to stop it, but that then completely bungs me up for days. I know it sounds daft but I take Buscopan which is a muscle relaxant and relieves the stomach pain and cramps that go with the diarrhea but it doesn't bung me up. My CA125 has fallen to 11 in a matter of weeks .I'm currently on holiday in Lanzarote which is something I could only dream of in the past couple of years. Like you I am very grateful to be on this drug as it's giving me freedom to live my new normal life without endless trips to the hospital. The diarrhea is a nuisance and I'm still learning how to manage it. Spare leggings and knickers in my bag, just in case! Good luck!

Nicola x

[Frenchhouse3 in reply to LittleMissStubborn]

Hi Nicola, thank you so much for your message. It helps to know other people are finding similar effects ( not that I’d wish them on you) and what to do about them. I’ll definitely start taking spare undies and clothing with me if I go somewhere for the day as, like you say, it can be so unpredictable! I have a stoma and basically the bag explodes on severe occasions. I do have some Buscopan, so I’ll try that too.

During the first couple of weeks, I just had the nausea, it’s been the last three with diarrhoea. I think I’ll start today to keep a food diary, like you suggested. To be honest, the side effects are similar, though much weaker than after chemo. I think part of my sadness with it is that during the few weeks break coming off chemo and going on to Olaparib, I felt just like my old self. However, if it gets my CA 125 down a bit further (currently 18) and also my two slightly raised lymph nodes, I’ll be very grateful!

Have a wonderful holiday and thank you so much again for taking the time to message. You’re very kind.

Love Denise xxx

[LittleMissStubborn in reply to Frenchhouse3]

I know what you mean Denise about that time inbetween chemo and olaparib. But I couldn't wait to start the trial as the olaparib promises so much. Nicola x

[Frenchhouse3 in reply to LittleMissStubborn]

Hi Nicola, I agree, we are very lucky to be able to try it as the general results are pretty good I think Xxx

[Katmal-UK in reply to LittleMissStubborn]

Hi Nicola, I trialled Cedranib after my first recurrence and it does cause much worse diahorrea than Olaparib, put them together and Im not sure Id have coped. I hope you continue to dowell. Kathy xx

[LittleMissStubborn in reply to Katmal-UK]

Thanks Kathy. It was a bit of a shock at first but I'm managing it a bit better now. I have to say your story and posts fill me with inspiration and positivity. Nicola x

[Cheryl4677]

Just wrote a post which disappeared!

I too have diarrhoea on the ICON9 trial. Just been advised to take regular anti nausea meds too.

Also have horrible mucus congestion and nosebleeds which result in me coughing throughout the night and disturbing the household!

Appetite isn’t good and I struggle to drink enough. No alcohol or fizzy drinks.

I hope your symptoms settle down. Just keep your team aware. Good luck.

Cheryl.

[Frenchhouse3 in reply to Cheryl4677]

Hi Cheryl, thank you for your message; I’m so sorry you’re suffering with the side effects too. The nosebleeds and mucus build up sound really unpleasant and disturb your sleep which must be really frustrating. Can your Onc nurse suggest anything to help with this at all? I had nosebleeds often in chemo but so far, not in Olaparib. I do hope it settles ASAP for you.

How often to you take the anti nausea pills? Is it once a day or after eating each meal?

Interestingly, I found on the MacMillan website that you shouldn’t eat an hour before taking Olaparib or two hours afterwards. I’ve started to follow this and do feel a bit better. It doesn’t say this in the advice sheet with the pills though. It definitely does make a bit of difference.

Also, I’ve started drinking more water which relieves the sickness a little.

How long have you been on the trial so far?

Wishing you all the best and thanks again for your advice.

Love Denise

[Cheryl4677 in reply to Frenchhouse3]

Interesting about when to take meds. I usually take my morning dose with breakfast and my evening dose before I go to bed. I’m quite a late starter these mornings and I feel I need to be up for an hour or so before i can eat my breakfast. So usually 9.30. Which suits my evening dose 12 hours later too. Not really noticed any difference regarding food with or without.

I’ve never been much of a drinker (alcohol or soft). How people drink pints is beyond me so I keep sipping tea/ water/ squash etc.

I’ve just completed 9 months on the trial and although I I have experienced lots of niggly side effects consider myself lucky to be included. I have had a problem with anaemia requiring transfusions. Five times in all -usually two units( not pints) and it pulls me back some of my energy.

Take care and hope the bowels sort themselves out or at least show a pattern you can work round.

X

Cheryl

[Frenchhouse3 in reply to Cheryl4677]

Hi Cheryl, thank you for your message. Yes, I take mine around the same sort of times. I do find I feel more sicky ( and my mouth waters like crazy) if I take them with food.

Like you say, we are so lucky to be on these new tablets and here’s hoping we all stay well on them.

I don’t get up as early as I used to but my energy levels aren’t too bad, more nauseous feelings and diarrhoea!

Hopefully, in time these will even out as I get around to discovering which foods to avoid. Incidentally, anything sugary ( which I normally go for) is one of the worst food types with regards the nausea! Annoying but at least that stops me from eating as much rubbish as I used to!

Denise xxx

[mupash]

HI-

SORRY TO HEAR ABOUT YOUR SIDE EFFECTS. I FOUND IMODIUM WASN'T THE ANSWER FOR ME. IT BINDS YOU UP TOO MUCH. IF YOU CAN GET LOMOTIL IT'S WORTH A TRY. IT HELPS ME A LOT. I ALSO TAKE CULTURELLE PROBIOTICS. MY ONC

TOLD ME TO TAKE OMEPRAZOLE OR ANY ANTACID. I HAVEN'T DONE THAT YET.

MY PROBLEM IS THE FATIGUE WHICH DRIVES ME CRAZY. IF THAT WENT AWAY I WOULD BE VERY HAPPY! TRY TO GET SOME LOMOTIL AND SEE IF THAT HELPS YOU.

LEE

[Frenchhouse3 in reply to mupash]

Hi Lee, many thanks for your message, I’ll definitely try the Lomotil. My consultant actually took me off Omeprazol as said it might interfere with my Olaparib.

I’m not too bad fatigue wise. I don’t get up particularly early as I’ve not returned to work yet but generally okay. It’s the sicky feeling I hate and my mouth watering!

Hopefully, this will lessen with time!

All the best with the fatigue, my consultant did say that that will definitely improve after a couple of months.

Denise xxx

[mupash in reply to Frenchhouse3]

HI-

THANKS DENISE. MY MOUTH WATERS A LOT TOO. IF IT KEEPS THE BEAST AWAY, I GUESS IT'S WORTH IT! WISHING YOU THE BEST OF LUCK. LEE

[Frenchhouse3 in reply to mupash]

Thanks Lee, I’m so relieved it’s not just me; my consultant said no one else had experienced this that he had talked to. Yes, if it keeps the beast away , it’s wonderful!

Just awaiting my BRCA gene test results now. Very nervous! ( I did have the BRCA 2 mutation in my tumour that was removed).

Denise xxxxx

[mupash in reply to Frenchhouse3]

HI-

IN A WAY THE BRCA GENE IS GOOD NEWS BECAUSE THE PARP DRUGS WORK BEST FOR THOSE WITH THAT GENE MUTATION. I HAVE IT TOO.

HERE'S HOPING!

LEE

[Rankij11]

Hi

I have just completed week 6 . The side effects worse in the last 2 weeks. The worst is fatigue , I’m normally energetic and this depresses me . Nausea most of time but is relieved a bit by eating ( I think the advice on the times of non-eating is for capsules not tablets?????) , also tum feels like there’s a rock in there so not so hungry. I stopped alcohol when I was diagnosed about a year ago as my liver was involved, fancied one after chemo stopped , but now I seem to be off it . Sad ! Only one random attack of diarrhoea so far. Some neuropathy but I’m used to my feet being dead and cold now. All this is supposed to get better so I’m keeping going and it’s great to hear from people who are doing so well . You are all so positive , I try not to moan but just sharing some information in case useful

Jennifer

[Frenchhouse3 in reply to Rankij11]

Hi Jennifer, our symptoms do sound quite similar as I too have neuropathy in my toes and am sort of used to it. I’m trying to eat less fibre again to help stop the regularity if the diarrhoea.

Yes the McMillan advice was re: capsules.

I’m trying to eat small amounts often now to help with sickness too and drinking lots of cold water helps!

I do think it’s good to share info too as it really helps.

Wishing you all the best and thank you for your advice, very much appreciated!

Denise xxxxx

[Wonnie]

So lovely to see great advice (and amazing success) around Olaparib. I've just completed my first year on it with a 'NED' scan last week. I didn't get bad diarrhoea but in the early days but found that when I had to go, I had to go. Nausea and fatigue were the worst for me. Took 3-4 months to really settle. Interestingly, I had a relative with bad nausea at the same time for something unrelated and she reckoned that nausea all the time causes the extreme fatigue. I'm doing much better now. Always careful about what I eat. But definitely lacking pre-cancer energy levels. I have learnt the art of the 20min power nap.

It would be super to understand how some of you are lasting so long on it - from a medical point of view but also if you're doing anything complementary.

xxx

[Rankij11 in reply to Wonnie]

Thank you for that , it’s helpful to know things should improve! Helps with keeping going . Interesting about the nausea/fatigue thing . When I had bad sickness on chemo it was always associated with extreme tired/cold feeling , so maybe there’s something in that . ??? Any advice from people who have been on olaparib for a long time gratefully accepted . I want to get round a golf course again .!!!Also what foods do you avoid . I crave sweet things but this is SO bad !

Best wishes

Jennifer

[cathy46]

I find your comments about Diarreahoea interesting as I have been on Olaparib Capsules for about 18 months now and am the opposite I have to take something for my bowels daily or I get constipated Get the nausea still occasionally and try milk first which sometimes help otherwise take your anti nausea medication I am on 4weekly bloodtests and have had a few kidney problems but am put on reduced dose until Kidney function improves then back on full dose again the fatigue is still around some days worse than others I do have the braca gene 2 which has allowed me to be on this drug