Olaparib question - temperature and feeling rubbish.

[sticky3006]

Hello ladies.

Hope you're all having a good weekend. Looking for a bit of advice. I've been on Olaparib now for five months. For the last two weeks I've felt exhausted, tired and 'not quite right' which I put down to side effects of the tablets. About five days ago I woke in the night shivering and sweating with a temperature of 37.8. I went for a covid test after speaking to my CNS which was negative so I was assuming I'd just got a virus. My worry though is that the temperature isn't going and I also have a dry cough. I plan on phoning my Oncologist on Monday to ask her advice but I'm wondering has anybody had similar on Olaparib? In the side effects list it says that upper respiratory chest infections and pneumonitis are potential problems. If its a simple chest infection then I can deal with that but if its pneumonitis then I think the tablets have to be stopped for a while which of course I don't want to happen. Thanks in advance,

sticky3006 xx

[delia2]

Hi Sticky. I’ve been on Olaparib for four months and have felt similar to you but never had a fever. I often feel as if I have one with feeling hot but not chills. I have periodically had a slight cough which I probably only noticed because of vigilance over Covid. I have struggled with fatigue but have noticed weeks where I’m continually under the weather as if I had a virus. I hope you’re just experiencing side effects but maybe the Covid test needs to be repeated? People do have false negatives. I do hope it’s neither Covid nor pneumonitis! But don’t ignore the fever. Xx

[sticky3006 in reply to delia2]

Thanks delia2. I’m currently picturing every worse case scenario but yes you’re right there can be false negative covid result so I will repeat. It’s a shame as I’ve been feeling really good on Olaparib so this has really cheesed me off 😬. I’ll see what the doctor says on Monday. Take care x

[Frenchhouse3]

Hi Sticky, did you get my reply, it seems to have disappeared? Xxxxx

[sticky3006 in reply to Frenchhouse3]

No! Sorry 😂. X

[Frenchhouse3 in reply to sticky3006]

Darn, I don’t think I pressed the reply box properly!

The symptoms you are describing sound very much like the Covid symptoms I had for around a month. By the time I was tested ( at the Oncology centre), my results showed negative. However, because my bloods were also checked for sepsis etc and all appeared normal, the consultant thinks I had a false negative and I did have Covid. I would definitely advise having another follow up test and also check out your symptoms with your Oncologist too, to cover all bases.

I also had a mild chest infection from the Covid which was treated with antibiotics. ( I was taken off Olaparib by my consultant for a week with no adverse effects.

My friend had a negative Covid test around the same time as me but later showed antibodies. ( We hadn’t caught it from eachother as we hadn’t met up at all).

I’m now completely fine.

Hope this helps

Denise xxxxx

[sticky3006 in reply to Frenchhouse3]

Thank you, that’s reassuring to hear. I’ll definately call my consultant on Monday to see what she thinks and also have a repeat covid test. I was doing so well and now am annoyed with myself! Take care and thank you x

[sticky3006 in reply to Frenchhouse3]

I was just looking at your previous posts. Did your bloods etc. settle down as you were worried? 🤞🏼X

[Frenchhouse3 in reply to sticky3006]

Hi Sticky,

Yes, my CA125 went up to 37 whilst I had suspected Covid and has now come down to 17, so I feel really happy. My HB had gone down to 85 around a month ago. I had another week off Olaparib ( advice of my Oncologist as I was going away for two weeks) and I took iron water supplements. It went back up to 99 again. However, this week it was down three points to 96 but I’ve been told that’s still fine. Keeping on the iron supplements though, as I don’t want my Olaparib cut down if I can help it.

Xxxxx

[sticky3006 in reply to Frenchhouse3]

Yes I’m taking multivitamin with iron too. Desperate to keep my bloods within range! So pleased your ca125 came back down. Mine has gone up to 15 from10 but I’m trying to stay calm and hope my swinging temperature has caused the rise. So much to worry about, I’m surprised we’re not all swigging a bottle if vodka a day! X

[Frenchhouse3 in reply to sticky3006]

Haha; yes! Don’t worry about the CA125 because mine went up in three increments before it came down and I was worried sick. My Onc nurses said this is quite common and that as long as your below 35, they don’t get concerned. Other indicators would be necessary.

It was the suspected Covid that did mine as when my symptoms started to go, my CA decreased. The relief was wonderful!

Xxxxx

[Frenchhouse3 in reply to Frenchhouse3]

Sorry, you’re

[sticky3006 in reply to Frenchhouse3]

I feel tons better today! It makes me realise how rubbish I've felt for the last two weeks. Have just wolfed down a huge roast dinner and feel I've got much more energy. I'm going to have my bloods repeated in a week or two but am trying to push that to the back of my mind. Good to know that your numbers came down, what a relief! Take care xx

[sticky3006 in reply to Frenchhouse3]

Hi Frenchhouse, I’m on antibiotics as my temperature still very high. Just wondered are you still on maximum dose? When you were poorly with suspected covid did you have a high temperature? Thanks x

[Frenchhouse3 in reply to sticky3006]

Hi there, yes, I had a high temperature for four weeks running. I tested negative for the test but my GP and Consultant I saw both think I had it. I had Doxycycline which really helped.

My friend tested negative too but was positive for antibodies.

I actually came off Olaparib for over a week to allow the antibiotics to work better.

Hope this helps. Your symptoms do sound very much like mine.

( I may have said earlier on that I had all my monthly bloods done at the same time as Covid test to rule out anything else and my CA shot up but has since gone back to normal) xxxxx

[sticky3006 in reply to Frenchhouse3]

Thank you. I’m really worried my consultant will reduce my olaparib dose permanently which I don’t want to happen. I can quote you when I speak to her! My symptoms do sound very much like yours. I’m so annoyed with myself for being ill but I know these things happen. So weird as I was feeling great until I came back from Cornwall and haven’t been right since! Thanks again x

[Frenchhouse3 in reply to sticky3006]

I was worried too that I would have to come off Olaparib but my consultant just said a short break would help. I came off it again for a week recently as my iron had dropped but fine again now and still taking a full dose.

I completely empathise with your frustration with feeling ill. I am just the same! I think I may have developed a little hernia around my stoma and it’s really upset me even though I know it’s very common. I keep having to give myself little pep talks!

Hope you feel much better soon.

Lots of love xxxxxx

[Frenchhouse3 in reply to Frenchhouse3]

Ps My consultant advised me to come off Olaparib for a week, I didn’t do so off my own back. He did say I didn’t have to but that it might make antibiotics work more efficiently. Xxxxx

[sticky3006 in reply to Frenchhouse3]

Thank you. Will ask my consultant tomorrow 🤞🏼X

[SUE7777]

Hi Sticky3006,

I'm on Avastin which has the same side effects i.e. upper respiratory chest infection so when I got a chest infection I tried to carry on and ignore it. It turned out to be pneumonia a pluerisy and I was hospitalised for 2 weeks, I needed antibiotics, don't forget out little bodies are compromised by all this. Please learn from my mistake and talk to your Doctor. Take care and all the best. Sue xx

[sticky3006 in reply to SUE7777]

I know, sometimes I think I'm really tough but then realise I'm actually vulnerable and need to slow down a bit. Thankfully my temperatures been down all day today so fingers crossed I'm on the mend. Realise though that I must delegate more and not run round like a lunatic all day! Good luck to you xx

[Erinna72]

Hi,

Sorry to hear about your concerns - it’s true that olaparib has many side effects, some that are not even mentioned. Hope you get sorted quickly.

I started olaparib the same time as you and initially had no issues apart from swollen feet and raised creatinine which has settled down to almost normal. The dr. put it down to a side effect! However, I too have started feeling fatigue. What is concerning me more though is my Ca125, which has gone up from 8.3 to 13.8 in just under 3 months. Am doing scans on Tuesday but without the dye due to creatinine levels being raised and my kidneys being compromised ! (Doctors words) Good job in a way as have no veins, which is not ideal. They refuse to put a port just for that.

[sticky3006 in reply to Erinna72]

Good luck for Tuesday. How we cope with all these tests, investigations and procedures is amazing. Your ca125 hasn't been a big jump so hopefully it'll settle back down. Let us know how you get on.

Thankfully I'm feeling better today but am planning a nice, early night with my good book! Take care xx

[Wonnie]

Hi Sticky

I’ve been on Olaparib for 18months. I’ve also been feeling more off colour the past few weeks too - almost like I did when I first started taking it. Latest scan and ca125 are good.

No fever, but quite fuzzy headed and background nausea. Going to speak to nurse. Intrigued to see you and otherS suffering similarly.

Symptoms seem to wax and wane - I wish I knew why though.

Love

Siobhan

[sticky3006 in reply to Wonnie]

Thank you for your reply. In some ways its reassuring knowing others feel the same as we can compare symptoms! Thankfully your scan and numbers are good which is the main thing. I know a lot of women seem to have a reduced dose which is effective but if possible I'd like to stay on full dose. Good luck xx

[Erinna72]

Thank you for your wishes. Glad you’re feeling better now.

I would like to ask if you or any of you ladies are BRCA negative. I am and as I am aware that olaparib is usually prescribed for positive BRCA patients I’d be interested to hear of it actually working for those of us who are negative.

The Oncs must have some hope, otherwise they would not get approval for prescribing it through the equivalent of your NHS, being such an expensive drug. ( I live in Greece).

Take care everyone

[sticky3006 in reply to Erinna72]

Hi Erinna72,

I’m BRCA 2 positive but I know there are lots of negative ladies on parps. How long have you been on Olaparib? X

[Erinna72]

Hello again!

Just 5 months - same as you I believe.

Still feeling better?

xx

[sticky3006 in reply to Erinna72]

Not great. Have been to see my GP this morning who has repeated my bloods and will call me when results back. Still have this temperature and feel drained 😕x

[Erinna72]

🤞it’s a temporary blip.

[sticky3006 in reply to Erinna72]

Thank you, I hope so. Got my knickers in a twist this afternoon though, overthinking and worrying. Have given myself a stern talking too! Take care x

[sticky3006 in reply to Erinna72]

Hope your scan went ok today x

[Erinna72]

Thank you, doc told me to phone tomorrow as he would then hopefully have seen them.

xx

[WoodyB]

Hello Sticky

Just to say I hope you're feeling better and your bloods are good.

Woody x

[sticky3006 in reply to WoodyB]

Thank you. I’ve not been great. My temperature will only come down with paracetamol and as soon as that wears off my temperature goes up again. I’m having a week off Olaparib as my CNS thought that may be contributing to my symptoms. I’m having repeat bloods tomorrow and waiting for my GP to call me back today as my Oncologist is off until next week. This has been a good two weeks now so really hoping it all starts to resolve soon. Thanks for asking and I hope all good with you and your wife.

[WoodyB in reply to sticky3006]

Sorry to hear that Sticky. Hopefully your blood results will point them in the right direction. Good luck and hope you feel better soon x

[WoodyB in reply to WoodyB]

Really hope your bloods have been sorted by now and you're starting to feel better

[sticky3006 in reply to WoodyB]

Hi Woody. Thanks for your message. I spent a week in hospital with an ‘immune mediated chest infection’. It was a horrible time but when I started on a course of high dose steroids there was a dramatic improvement thankfully. I had two weeks off Olaparib and restarted on Monday. Repeat bloods next week. Feeling tired but much better and enjoying being quite lazy! Bye for now, sticky 3006.

[WoodyB in reply to sticky3006]

Sorry to hear that you had a week in hospital. Suzanne says she is never going back as an in-patient!!

Glad to hear you're feeling better now and hope everything will settle down and you can keep taking the magic pills.