PARP inhibitors versus surgery

Hi Motiva,

I hope you have got the result you wanted and have now started on the treatment. Let me know how you get on with the Olaparib if that is your next step.

Sporty OAP

Hi

So my scan shows traces of ascites but as yet no sign of anything else. Since my ca125 is still rising they are going to scan me in 3 months again. They have also reduced my Olaparib and I’m seeing them again in a month to possibly reduce again. I had a 4 week break a couple of months ago and felt a lot better so trying to get a better quality of life amongst all of this. I have a Bevacizumab infusion every 3 weeks which they may reduce as well. Apparently on the trial the US used a higher dose than the UK but the results were the same. He said the drugs companies have the higher dose as the recommended dose but  wouldn’t fund a trial to  see if a lower dose was just as effective. Obviously it’s not in there best interests!!!

I’m thinking whether I can stop checking my ca125 when I have my bloods because it just makes me fret more. They have said they will do all they can to help me have my holiday in July so I’m feeling a bit more positive.

It’s all hard. The fretting on about what’s going to happen is exhausting me!!!!

Hoe your continuing to feel like your coping with meds, take care x

Hello Diney, 

I have only recently joined the forum but was interested in your last post. I have been on Olaporib for nearly three months with manageable side effects although over the last few days haven't been feeling that brilliant. What side effects were you getting that made you have a break from the drug?

I seem to be getting more bone pain in my hips and lower back also feeling very tired, sick and generally very low energy levels. 

I hope you manage to get your holiday. 

Sporty OAP

Hi Sporty OAP

It’s been quite hard to decipher it all. I started Olaparib in September but also Bevacizumab in an infusion that month too. By October/November my body felt battered, a lot of bone and muscle pain. They thought I might have poly myalgia so put me on steroids which made me feel more ill.

 I was very nauseous though that went off after a month or so, head aches, pain, fatigue, feeling like I had a perpetual cold and generally wrecked, I think they mess with my sleep too because I can be absolutely exhausted but can’t sleep. One month off Olaparib but remembering I missed an infusion too, the cold went, head aches stopped but more than anything I just felt like my head cleared, I felt more like myself and certainly less fatigue. I started doing an anti inflammatory diet to see if I could help my pain and also started acupuncture.

Back on them both and as the weeks go on I feel like it’s all having more effect again. My body pain I think is def a separate problem but I feel like the pain has racked up again on the meds.My oncologist said that his patients with rheumatoid arthritis are all back seeing their rheumatologists within 2/3 months of stopping chemo, I’m not sure if it’s something to do with your immune system. He also said it took your body months to recover from chemo and surgery but you’re not getting that because you start the drugs pretty soon after it all. 

To be honest I have felt so awful Sept to January that when I had my scan in January I told my sister I wouldn’t be having more chemo because it wasn’t worth it for how I’d felt in between. I had my month off and started feeling better and more positive so when I was scanned again and could be looking at a reoccurance  I actually thought I could do it again. 

For me I need to be feeling better and that what life I have left I can do something with. My ca125 is still rising but I’m going to ask to reduce everything again next month and hopefully get on holiday feeling a bit better and then il take what comes

Goodness, this has turned into a bit of a novel!!!! It’s different for everyone and there can be so many other contributing factors but the bottom line is these are pretty heavy duty drugs and for alot of women it’s keeping their cancer at bay for alot longer. It’s weighing up how it’s affecting you and whether it’s worth it.

Wishing you well and hoping you stay clear for as long as possible :)

Hi Diney

I certainly agree with you on questioning quality over quantity of life. It's very hard hearing your story and I do hope you have support at home, or at least someone to talk to.

I am lucky and do have plenty of support but nevertheless only we know what it's like having our life in the balance.

I wish you well and keep writing the "novel" if it helps.

I'm not convinced about parps, I think I would come off them and give your body time to do it's own thing for a while.

Naraparib caused me lots of problems January till June 22, I was off them more than I was on them in and out of hospital.

15 months n.e.d I was told they thought I would of had recurrence alot sooner as I was diagnosed aggressive stage 4

Now I'm going through chemo again,

Do any of you have a picc line for your chemo, cannulating is a big problem for me, took 6 attempts last week, I have nxt one on 24th May going to Cyprus then prob picc line fitted when I come back,

I feel for all of you suffering just now, but think about what's best for you and your families  xx

Hi

I have been wondering how you are, but like I mentioned a few weeks ago I’m finding it hard to navigate in here.

So you’ ve started chemo already? Have they said how many you will likely have? I’m glad to hear  you’re still trying to get to Cyprus.

i had my scan results last week. It just showed traces of ascites but nothing else yet. Ca125 still rising so I fear it’s just a matter of time so I’m just desperate to get away to Rhodes in July. They are scanning me again in three months so I’ve decided I’m not looking at my ca125, it just messes with my head and has me fretting

Hope that holidays end up a possibility for us both

x 

My holiday is definitely happening lol

I told them I'm not available for chemo 7th till 18th June lol

My consultant reduced my chemo to 60% I'm hoping she is being nice so I can enjoy my holiday and I will take what comes when we get back

I have appt to see her on 22nd and nxt chemo on the 24th hoping bloods are OK.

Luckily very mild side effects post chemo

Not looking forward to picc line but seems the best way forward for now

Please god you get your holiday, I wouldn't survive if I couldn't go on holiday, that's all I look forward to

Keep going

Head up, shoulders back, boots out

Smile on xx

Boobs

Disney

I actually wouldn't be happy being scanned in 3 months that's a long time to wait, 

Could you not get a second opinion.

My ca125 was rising slowly and last week it had gone down to 37 so the ca125 isn't always a good marker, have you had a pet scan, my ct showed 2 tumors 1 week later pet scan showed 4

Maybe ask these questions

You need to have peace of mind one way or the other 

Take care xx