Good news post 📫 and advice for lynpraza please x

[Newbery3]

Hi all, I haven't posted for a while but have been on reading posts 😊. Anyway good news bit is my CA 125 is down to 7 🥳🥳🥳lowest its ever been and I wasn't expecting it as I was having them niggling pains here and there that make you worry🫣 so very relieved 😊 I haven't Bern on since I started my parps 28th December I was on 600mg lynpraza then lower to 500mg end of January after over phone appointment with oncologist 2weeks ago because I felt so tired out of breath easy and just aching feet arms and not myself she gave me a week break!!😁 by day 3 I felt NORMAL again like before this all started! It was great 👍. Anyway now I'm back on my parps but 400mg and I'm feeling it straight away, just the same side effects as before, I'm going to try and stick out 400 as it's obviously working but I just want to know how long it'll take to feel normal again or how low anyone else has gone with stage 4 advance hgsc but ned? I can do things but not like that blissful week off ☺️ any advice x love to you all x Rhian x

[wendydee]

That’s good news, not about going back on the parps, but that you had an in killing of what you may feel like when you’re back on a week off, maybe more permanently. Just take care of yourself, Rhian, and we look forward to hearing some more from you.

Love Wendy xx

[Kjpip]

Hi Rhian, I know how you feel! I'm stage 4 hgsoc but ned at the moment 🤞 I've been taking 600mg olaparib/lynparza since June last year and also still having 3-weekly avastin infusions. I'm quite achey in my joints (in particular I've had a really stiff neck since last summer!) and I get really tired, eg falling asleep on the sofa every afternoon, not what you expect at the age of 49! I just treat it as my new normal though, as every time I think should I ask to lower my dose, I ask myself if I'm dealing with it and is it worth it for the potential benefit of keeping the monster at bay, and the answer is always yes - at the end of the day, anything is worth it if I get to see my kids grow up.

I had covid a couple of months ago so couldn't get my treatment when it was due and ended up having about a week off and, like you, I was amazed at how back-to-normal I felt during that week! I had so much energy compared to normal and could even turn my head again! but once I was back on the meds I soon got back into the 'new normal' mindset.

I'm sorry I can't give you good news that you'll feel normal again on the parps - although we're all different so you might! - but I wish you all the best with them and that you can find the best way of coping with the side effects xx

[Newbery3 in reply to Kjpip]

👋Hi, yes I've got a really still neck too! Well I'm on 400mg and I'm going to give it a few months to see, I think I was so shocked at the difference on my week off. It made me realise how much the meds affect me physically. I will try harder in the spring to get more energy and see xx

[delia2]

Hi. I just finished three years on Olaparib, having started it after first recurrence. I was on 400 mg for over a year and then 300. I haven’t had another recurrence but my oncologist decided to stop it. I did suffer from pretty bad fatigue and also finding food distasteful. As time went on the fatigue wasn’t constant but it was hard to take.

[Newbery3 in reply to delia2]

Thank you Delia, it's good to get as much info as possible. I'm taking it alongside avastin and been told I'm allowed it foe 2yrs, I wonder why we all have different time limits with parps🤔 do you feel more normal now you've finished them? X

[delia2]

Yes I do feel much better! The difference in the time span of taking parps has to do with the circumstances. Olaparib is prescribed for two years after frontline and has been prescribed indefinitely after recurrence. I think Niraparib may be three years after frontline. They are not rethinking the post-frontline term but in the US there seems to be some reevaluation of keeping people on parps indefinitely. xx

[Newbery3]

Oh, ok, well, you learn every day! 😊Well, I'm going to stick it out. Thank you xxx

[LesleyGB]

Great news about your CA125! I am on niraparib. I started on 1 December and by Christmas gave myself a break for a week as I felt extremely tired (walking upstairs exhausted me) and not interested in eating. I felt so much better after a week and so put myself back on them. The tiredness and lack of appetite returned, but started to ease off after a few weeks, and two months later I feel okay, as though my body has got used to the drug. If so, could it be the same with olaparib? My oncologist said I would be on it as long as it keeps working which is fine by me if I keep feeling okay . Hope you feel better soon and the side effects get sorted for you. x

[Newbery3 in reply to LesleyGB]

Hiya 👋, yes it's the same drug just different make, I do feel a lot better today energy wise but the stiff neck and joints are the same but eased 😊 Are you taking the parps after 1st treatment or reoccurrence? It's my 1st treatment for me so I've been told 2years by oncologist x

[LesleyGB in reply to Newbery3]

It's after a recurrence - had Caelyx and Carbo and before that Caelyx and Taxol.

[Newbery3 in reply to LesleyGB]

Well I'm so glad its all working for us all 💙 thanks lesley X