PARP inhibitors versus surgery

Great to hear from you and that your in fighting mode, lol

Absolutely agree that we need our holidays and after that we’ll face whatever comes.

Roll on July and hoping you continue with mild effects

Take good care of yourself and plenty treats, whatever form they come in xx

Sorry just saw this earlier message, derrrrrr!!!!!

I think they are waiting because there’s nothing to be seen and my one three months ago was the same. I think the fact I’ve got ascites starting means it’s on its way back to my peritoneum but I’m happy to be able to get away on holiday first. They have even said  when it shows it’s ugly face they may just keep me on maintenance for a while. I’m really trying to give myself three months off and just plan what I want to buy for my holidays. Mind I’m up and down on a day to day basis, lol

x

I think your holiday is the most important thing now, I would stop the parps till you come back if I were you, give your body a rest, when I came off them i felt like a new person. At the end of the day it's your body and your consultant should listen to what you want.

Who are you going on holiday with

Do you have travel insurance, I got annual cover with stay sure, it was £700 I'm scared to update it in case it goes through the roof or they won't I sure me 

Hope it all works out good for you xxx

Hi Diney

i definitely say get away on that holiday even if it does mean stopping your meds for a while you need that holiday

i have been told to stop focusing on the ca 125 because it is only one marker out of many but they don’t realise it is something we can see when we don’t know what is going on inside   I want to go to Australia next year not sure if I will make it I have been on olaparib for not quite a month and I have a real chesty cough and fatigue but trying to stay positive 

have a fantastic time on your holiday try and put this to the back of your mind, very easy to say almost impossible to do xx

I wonder how the professionals decide which drug to put us on, alot on here seem to be on olaparib, the naraparib I was on is very harsh I think, I know the profs are doing their best, bust sometimes I think the body needs time out from being battered. Mine definitely recovered better on its own, albeit cancer has returned

Keep going gals xx

Yes definitely looking to reduce drastically and he’s already said I can have a complete break for my holiday coz like you I started feeling so much better when I had my break off them for a month,

There are 21 of us going on holiday, family and close friends so I’m desperate to go!!

I looked at an annual insurance cover at first coz had such plans for as many holidays as possible but because I have felt so unwell I’ve ended up with just a one holiday insurance including my daughter and it was £329. A friend who has a heart condition recommended Paying too Much tho I did have an annual quote from stay sure but sure it was over a £1000!!!

x

I was on Olaparib because they said I had a repair pathway that wasn’t working properly, it’s in my dna?! Anyway it makes my body act like it’s got the braca gene even tho I haven’t. 
My time again and knowing what I know now, obviously hind sight is a wonderful thing!! I would have not done maintenance and went away on holiday as much as I could and lived the best life I could. For me the maintenance has just made me feel totally rubbish and with no energy to do much at all. That said I also had this fibro/poly myalgia going on too so that’s def not helped me. 
The oncologist said your body needed a good 6 months to recover from the chemo and surgery but you don’t get that because of the maintenance starting. I guess before maintenance women didn’t survive as long and for the people who aren’t having bad side effects it is worth it. I also think that maybe if your not having side effects and living your life you’d be less likely to go on sites like this so we probably aren’t seeing a good balance!

x

Yes I get what your saying its very hard and scary choices for some to make

Originally more surgery was discussed for me, stoma reversal ( stoma has changed my life n not for the better I hate it ) 3 hernias repaired and 4 tumors removed, but my surgical team thought recovery would not give me a very good quality of life although they asked what I wanted I don't think they would have taken the risk In the end.

Now reduced strength chemo, getting picc line after holiday and prob up the strength of chemo again and just see how long I get before another recurrence, as I've been told palliative chemo and it will keep coming back

So as long as I'm well enough to travel I'm going to 

I'm used to 3 foreign holidays and multiple weekends away and I will try my best to do what I can 

Xxx

You’ve been on one hell of a journey with this so you just get yourself away as much as you can as often as you can. Take care of yourself and keep in touch x

Hi

I decided this week I’m going to stop looking at my ca125 because it is really messing with my head and making me way more anxious. I know they are going to re scan me in 3 months and so I don’t need to keep watching it rise. If it does some huge leap they will pull me in so I’m just going to concentrate getting on the holiday and what I need to buy to wear, lol.

I think I had a cough early days but that subsided, 4 weeks isn’t long and I remember I was really nauseous but that calmed down. I think it takes a while for your body to adjust but if 3 months down the line  you’re not feeling well with it all then I’d discuss reducing the dose. I was told 40% of woman have to reduce the dose because of side effects so I wouldn’t suffer on them because that’s no life to live. It’s a balancing act for sure!!!!

x