Ladies taking Olaparib (Lynparza) please advise

FormerMember
FormerMember
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Hello,

my mum has been fighting ovarian cancer for nearly 2 years now. After two courses of chemo therapy (last finished in January 2016) she has now been given Olaparib (Lynparza) 4 days ago. She has BRCA1 gene mutation and her cancer is very agressive, even now her CA125 has gone up to 134 and she can feel the cancer growing in her abdomen.

She is treated in Sweden and this medicine has just been approved to be used there so here oncologist could not advise her any more than the insert in the medicine pack and my mum doesn't know anyone else taking this medicine. Further she cannot speak English well enough to ask you all for advice, so I am doing it for her.

Her current questions are:
1) Does the nausea (which she has started to experience since yesterday) remain as a side effect while you take Olaparib or would it go away?

2) Can she have a glass of wine now and then?

3) Any other useful advice or things to consider for someone on Olaparib?

Many thanks to you all!!!

Sanita (& mum Silva)

  • FormerMember
    FormerMember

    Forgot to say that if any of you speak Swedish, Russian or Latvian and would be happy to chat to my mum about your experiences with Olaparib it would be great for her!

  • FormerMember
    FormerMember

    Hi Sanita. Sorry I can't help with the language but just wondered if you were on Facebook? I am taking Olaparib, just started my second month. I have set up a new closed group for ladies on Parp inhibitors. It is also a new drug here in the UK so not much info out there. As for your questions, I have a small glass of red wine every now and again and so far been ok although water only in my 3 hour fast times. I also have a bit of stomach trouble but it seems to be worse in the morning, sometimes I heave a little but once I have had breakfast it improves.  She needs to drink lots of water, that helps the stomach. 

    I have a funny sinus feeling and feel quite tired but generally I feel ok. I have just finished my third line chemo and have been having cancer treatment for 4 years now, thankfully I am still doing well. Hope this helps. Anita x

  • FormerMember
    FormerMember

    Dear Sanita

    I have the BRCA1 mutation and I have been taking Olaparib for seven months now. 

    I was diagnosed with high grade OC on Friday 13th Dec 2013. Went through the op and chemo January to June 14 and then joined an Olaparib trial. I was on the placebo and the cancer came back after six months. Back to chemo Dec 15. 

    After that was finished, I started taking Olaparib. In the beginning I did feel very tired and had some nausea but as time went on the symptoms decreased. I wonder now if part of the tiredness and nausea was recovering from the second chemo. I also had very stiff creaky hips and struggled to stand up if I'd been sitting for a long time. Still do sometimes. 

    I still have tired days but generally I'm ok. I'm back at work but not full time. 

    Give your Mother some time to recover and encourage her to keep going. It's quite hard to swallow all those pills when your feeling sick but it will get easier. 

    You didn't say what dose she's taking? Is it 400mg twice a day? Does she have to eat, wait an hour, take the pills and then not eat for two hours after that? 

    I was advised that it's better not to drink any alcohol but I do very occasionally have a sneaky glass of wine. 

    I hope this is of some help to you.  I wish you both all the best and look forward to getting an update on how she's doing

    Take care

    Mhairi x

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you both very much for your replies, it is so very helpful to know how others are doing and hopefully my mum's nausea side effect will go away too sometime soon.

    I will ask my mum the dose and come back to you, but she does have a strict regime of when to take the tables before and after food. Not sure of exact intervals thought.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Anita,

    I had replied to you, but my message was removed as I had included my Facebook link so I guess just a name would have to do. I would love to join the group you have set up.

    Sanita

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Sanita,

    No worries - if you need to speak privately to one of the group, just send a private message.

    This is a public forum so it's best not to put personal details (eg. Facebook profiles) on here.

    Best wishes,

    M.

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks Michael,

    i have done so. I makes sense :)

    Sanita

  • FormerMember
    FormerMember in reply to FormerMember
    [deleted]
  • FormerMember
    FormerMember in reply to FormerMember

    I'd say yes to the wine. I asked chemo nurse, she said I shouldn't have a whole bottle lol, spoil sport. I don't feel like drinking but will have one this weekend as this is likely to be my best one before chemo next week.

    Can't help with the language but am having genetic testing

    LA

  • FormerMember
    FormerMember

    I have been on Olaparib since September 2015, I don't experience Nausea but my blood is badly effected and I have to have regular transfusions. My dose has been lowered a few times and I'm now on 8 tablets a day instead of 16. I do experience achy hips and lower back pain. I also enjoy a glass of wine or two at weekends and my Oncologist says this is fine. On the whole I feel quite well most of the time.