side effects of olaparib: I am having awful... - My Ovacome

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side effects of olaparib

19 Replies

I am having awful stomach pains and cramps since I started taking olaparib a few weeks ago and would like to know about other people's experience of this . It is really affecting my quality of life and i don't know if I can manage to keep taking it. My oncologist says the symptoms will settle down but I have an underlying problem of long -term IBS which has been made much worse by this drug.

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19 Replies
mrstadpole profile image
mrstadpole

Is it worth asking if the dose can be reduced? I have heard of this happening.Fortunately I have been on Olaparib for over two years now( after a first reoccurrence) but no side effects.Hope you can get it sorted soon. xx

in reply tomrstadpole

Hi mrstadpole thank you for your most helpful comments - my oncologist is a nice woman but she is pretty insistent that I start with the full dose but I know my body and I really think a smaller dose would be better for me...

Lyndy2 profile image
Lyndy2

Hi Sadiecat17, that sounds horrible and I am not surprised that you are wondering if you can carry on. I don’t think your oncologist’s attitude is helpful. Yes side effects do calm down after a while but you need help now. You can use over the counter meds with Olaparib, your pharmacist can advise.I guess you are using something to protect your stomach such as lansoprasol? You could ask for a high er dose if you think it would help?

The other method that could help is to reduce the dose of Olaparib to give your system time to get used to it.

I suggest you speak to your oncologist again and say that the current regime is affecting your well being and you can’t carry on like this. Be insistent, oncologists are good at dismissing patients side effects but they don’t have to live with them! It would be good if you can stay on it but you need a bit of help to keep going xx

in reply toLyndy2

Many thanks for your response Lindy. I intend to have a discussion with my oncologist about this and ask her to reduce the dose x

Katmal-UK profile image
Katmal-UK

Hi, I have been on this for well over 8.5 years. One of the side effects I have (albeit not all the time) is loose and urgent bowel movements, sometime with cramps. The issue has got a lot better over time (it’s now nowhere near as bad as in the beginning. I’ve found noting what I am eating to look for triggers and I can now guarantee what foods will trigger an episode. Doesn’t always stop me eating them! II would also seriously look to asking yr onc for a dose reduction to see if that helps? Good luck. Kathy x

in reply toKatmal-UK

Hi Katmal - gosh that's a long time to be on this drug! I was told that my limit is 2 years. Anyhow it's good to hear that things improved over time. The food triggers is something I am aware of and I will certainly request a dose reduction x

Georgiatec profile image
Georgiatec

I had a similar start to Olaparib. The dosage was reduced and that solved any symptoms I was having. I’ve taken Olaparib for nearly 2 years now x

in reply toGeorgiatec

Thanks Georgiatec I plan to ask for the dose to be reduced x

DinkyAnnecy profile image
DinkyAnnecy

My doctor said that it could take about 3-4 months to get used to. Maybe it would be worth trying for a bit longer to see if you adjust.

in reply toDinkyAnnecy

Thanks DinkyAnnecy I am trying for a bit longer but intend to request a reduction of the dose x

delia2 profile image
delia2

Hi. I had a rough time in the first six months but with different side effects. I’ve never been on the full dose . I started on 400 mg and after a year reduced to 300mg. It’s working wonders for me. As others advised please be assertive with your oncologist about your quality of life. Xx

in reply todelia2

Thanks delia2 -It is great that this drug is working wonders for you! Your comments along with the others confirms that I need to request a lowering of the dose x

thejoannabell profile image
thejoannabell

I had awful side effects from Niraparib when I first started it at 300mg. My oncologist was also reluctant to reduce the dose; I believe he wanted to give the side effects a chance to subside. I think that prescribers are told that it's ok to reduce the dose of a PARP, but not to increase it, so I think they tend to start at the max dose and work their way down. Hopefully your side effects will subside, or your doc will reduce the dose. I don't know if they understand how bad the experience can be for some of us.

in reply tothejoannabell

Thanks thejoannabell that is a very helpful response x

girakoch profile image
girakoch

Hello sadiecat17You have all my sympathy. It's desperate having horrible side effects from a life-saving drug. I started olaparib 6 weeks ago on a dose of 300mg twice a day. It has brought down my haemoglobin level so the dose has been reduced to 200mg twice a day. This has made no difference to my other symptoms. I get gastric reflux which I am treating with omeprazole and Gaviscon, and also periods of anxiety when I feel I can't breathe, and insomnia. Does anyone else suffer from these side effects? Do they get better with time?

in reply togirakoch

hello girakoch. Thanks for your sympathy. After a couple of set backs when I came off the drug then started again I agreed to try for a month (now two weeks in) then my oncologist will review and I hope she will lower the dose as the symptoms are really affecting my quality of life. Peppermint cordial sometimes helps stomach issues and really concentrated deep breathing might help your anxiety. I'm told that side effects settle down over time so we shall see....

Trickysite profile image
Trickysite in reply to

Hi Girakoch, I also had to have olaparib reduced to 400 mg a day because of anaemia. Am on 2 omeprazole daily .Sometimes an acid tummy wakes me at night. Sometimes have vivid dreams but that may be anxiety? I would look into all sorts of relaxation techniques to find the right one for you.

Heart12345 profile image
Heart12345

Sorry for late reply but I too had Ibs long before cancer and I find after chemo and on Lynparza I seam to have become sensitive to gluten and possibly lactose. Not sure if coincidental but it may be worth trying gluten free diet for a bit and or reduce lactose. X

in reply toHeart12345

Thanks for this heart12345. I've had IBS for years and had the vain hope that after all the chemo and surgery for the cancer it would disappear but sadly it hasn't in spite of keeping to being gluten and lactose free so I think my side effects must be due to the Lynparza so hoping the oncologist will reduce dose when I see her next week...

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