Olaparib / Lynparza help for PPC: Hi 🙋🏽‍♀️ Does... - My Ovacome

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Olaparib / Lynparza help for PPC

Amiieb profile image
7 Replies

Hi 🙋🏽‍♀️ Does anybody on here take olaparib as a maintenance for PPC? My mums about 2-3 months in, after finishing 6 rounds of chemo and debulking surgery. After her initial treatment ended her CA125 is down to a fantastic 7 and no sign of cancer 👏🏼

However this Olaparib is not giving her a great quality of life at the moment. She’s extremely fatigued, feels sick (doc has slightly adjusted the dosage to combat this), and she aches in pain daily. She has no strength or energy really to do much apart from lounge around the house.

Its really difficult because I know I don’t know how she really feels because I’ve not gone through this myself. I try so hard to encourage her to get out of bed a little bit earlier than lunch time, and to take walks as frequently as possible to keep her moving. She’s only 58, i don’t want this awful disease to take away any more of herself than it already has 😞

If anyone else has felt like this, what helped you get through it and some relative normality back into your routine?

Thanks x

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Amiieb profile image
Amiieb
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7 Replies
Newbie_2020 profile image
Newbie_2020

Excellent news that your mum's treatment with Olaparib has given some good results. Long may it continues.

I am sorry to hear that she is suffering from the Olaparib side effects and this could be manageable.

If you/she contact her oncology team, they may put her on a lower dose.

Furthermore, one of the Olaparib side effects is causing folate deficiency, easily checked with a blood test, which induces anaemia.

This in turns causes fatigue, breathlessness, and low mood. There are lots of publications about it - pubmed.ncbi.nlm.nih.gov/311...

Please check again with the team, they may add some folate supplements to her routine. 1mg of folate (active form)/day will help. Having said that folate, also known as B9, belongs to the B vitamins family. So, by adding folate, you'll also need to also balance the remaining members of the same family by taking B-complex. Again, best to check with her team.

Jacky5 profile image
Jacky5

Hi

I take olaparib for Ppc. Im 55 and I 've been taking it since January this year following chemo and debulking like your mum.

I've had side effects but to a lesser degree than your mum. The side effects have definitely got better as times goes by. I m now pretty much back to something like my old self and routine.

Both pain and nausea can be utterly exhausting , mentally as well as physically. Can mums drs or nurses help with medication ? They have probably suggested preventing nausea if possible by taking the tablets before the nausea starts?

I dont know about Mum but I experienced a kind of depression after the chemo and surgery ended and the maintenance therapy started. It surprised me as you imagine finishing treatment and getting good results would leave you on a high and feeling positive for the future...but for me it was the time when the reality of what I'd been through... and the uncertainty of my future began to sink in. Other ladies here recommended a very good article called After the treatment finishes...then what? By dr Peter Harvey which I found really helpful.

Your mums results are really good news and your love and support will be a great comfort to your mum. I really hope she starts to feel better very soon.

Liz x

Rhonddalady profile image
Rhonddalady in reply to Jacky5

Hi Jacky, I've just read the article by Dr Peter Harvey. It really does put things in perspective and highlights exactly the emotional and physical journey we are or have been going through. Thanks for highlighting it. This makes me realise my reactions throughout treatment and after are normal and I can take my time to heal from this awful disease. Thanks Jan x

Jacky5 profile image
Jacky5 in reply to Rhonddalady

You're welcome Rhonddalady. Im glad you found it helpful. Someone posted about it last week and I found it really helpful too.I think it would probably give close family and friends some insight too into our "journey" too.

All the best

Lx

Shrek1609 profile image
Shrek1609

Firstly the side effects of Olaparib are worse when you first start. They last a couple of months. You need to drink, drink, drink and drink whilst taking it. You must stay hydrated and help flush it through. Always always eat BEFORE taking it... this helps with nausea. Fatigue, nausea etc come and go in waves the longer you’re on it. I’ve been on it 20 months since first line chemo and my ca125 is always around 5-6. It’s hard at first, especially straight after IV chemo and surgery BUT for me I always think even on a bad day it’s better than whilst on IV chemo. You have to learn to pace yourself. If you know you need to do something one day have a quiet day the day before abs after. Oh and did I say.... DRINK LOTS. Make sure mums got an anti sickness tablet to take until her body gets used to Olaparib. For me the benefits far outweigh the issues now. Good luck

Rhonddalady profile image
Rhonddalady in reply to Shrek1609

Hi, like your Mum, I've also had excellent results after 1st line treatment and debulking surgery . I started Olaparib beginning of October, I did feel weak and tired but put this down to the battering my body had from chemo and surgery. It suddenly got a lot worse as I reached my 5th week, I struggled to get out of bed, I was weak and very weepy, after 3 days of this I phoned my team. I had bloods done the same day and results back that evening, which were normal. I had to stop taking the meds for 10 days to see if things improved which they did. I've just started on lower dose and keeping fingers crossed. One thing I've learnt through chemo is I need a routine, I also need to pace myself. As the previous lady commented drink plenty, eat before taking meds , take nausea meds as a preventative and regularly. Activities should be balanced with rest. Totally agree with Shrek1609 that every other day alternate between having a day relaxing with a day when you want to do something. I'm expecting a similar reaction with this lower dose , I'll be kind to myself but determined to push through until my body gets used to it. Contact your Mums team I'm sure they'll help find a solution. Hope she feels better soon.x

delia2 profile image
delia2

Hi. I’ve been on Olaparib since April and I did feel like your mum for quite a long time but finally feel normal except for some joint pain. I’m only on 400 mg a day. My oncologist prescribed Ritalin for the fatigue. I only took half a pill, 5 mg, but it helped. If it’s not called that in the UK it’s one of the two main drugs used for ADD or ADHD.

But reducing the Olaparib dose helps for many people. Xx

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