Good morning ladies, I am hoping someone will have some sage advice for me. I was diagnosed in October 2017 following what turned out to be a huge debulking operation for suspected bowel cancer. The primary site was probably the Fallopian tube- the following PET scan revealed that it was stage 4 as the beast had invades my lungs, peritoneum, ureter and aorta. Carbo taxol worked well and my oncologist was amazed by my response to the regime. Avastin followed and I have been treatment free since this January. My CA125 is currently 9, so all is well.
My dilemma is that following genetic counseling I am BRAC1, this is a changed diagnosis as originally it was negative (!?!?). My oncologist is talking about Olaparib. I will see her at the end of next month to discuss as we put everything on hold while my husband undergoes treatment for esophagal cancer and I needed not to have side effects and be the strong one. He should have his last chemo on the same day as my appointment with her.
Initially I was anti having any further treatment while I am symptom free, why go through all the hassle of feeling crappy again? However, yesterday’s news reports about Olaparib have made me pause for thought- would I be doing myself a favour by agreeing to taking it or should I leave the beast alone and see what happens?
Any advice from those of you who have, or are taking Olaparib would be greatly appreciated. What can I realistically expect as side effects and has it been worthwhile for you?
I live in France so was unaffected by yesterday’s announcement re the NHS, the treatment here is based on need, not cost.
Thanking you in advance and hoping you all feel a bit more comfortable now that the heatwave has calmed down.
Sending love to you all
Joy xx
Olaparib dose reduction
Olaparib question please? 
Hi Joy
We are all different in our outlook and will respond differently to the drugs so it’s always a balance of quality of life and a personal choice.
But If I was offered a tablet that could reduce my chances of recurrence by 70 % ( I think that’s the stats if I’ve understood correctly) I’d definitely give it a go to see if I could tolerate it, and would be over the moon. For our NHS to fund for firstline there must be some strong evidence as they are very reluctant to fund new drugs !
As a 56 year old, non BRACA, stage 4 patient I’m hoping they find a non BRACA maintenance version with the same results ASAP for all us Non BRACA ladies dealing with the fear of recurrence on a daily basis.
Good luck with your decision and I’m sure some BRACA ladies who have taken the drug will be able to offer you an insight into their side effects and views.
I’ve met Florence who was featured on the BBC news and I know she feels she wouldn’t still be here without it.
Love and best wishes Kim x
Thank you Kim I needed to hear from people who understand where I’m at. It’s hard for my family to understand and they’re desperate for me to stay well.
Take care, hugs
Joy x
Hi Kim has no one mentioned Niraparib to you I’m non braca and was put on this as a maintenance drug as it works the same as Olaparib.
Best wishes Sue
Thanks Sue, yes I’m aware of Niraparib but thought it was only available for non BRACA maintenance following chemo for a recurrence. I had Avastin for a year and am 2 and a half years since finishing first line and 1 and half years since finishing Avastin so I’ll definitely check it out again at my next oncology review in Sept incase the protocol has changed. I hope it’s successful for you without too many side effects.
Best wishes Kim x
Kim take a look at the ICON9 trial on the cancer research site. This has been offered to me as a stage 4 patient who is non BRCA and had a recurrence after 9 months. Like you l will gladly take a tablet that might help me stay here longer. X
Thanks yes I’ll have a look at ICON 9
and am also going to check out the Athena trial which is looking at another parp called rucaparib but as I’m lucky to be a year and a half since finishing Avastin I may not be eligible.
I hope the trial is successful for you and gives you a long long remission.
Best wishes Kim x