scared. Onc says I cant continue with Olaparib as have reached my 2 year quota. She actually said it was ‘eye wateringly expensive’ for the NHS. It is agreed it is keeping the CA125 measurement surpressed, so not being on it is frightening. I would like to remain on it at a lower dose. Has anyone else stayed on it as maintenance after frontline Chemo please? If so, what criteria did your Onc use to keep you on it? I have asked to remain on it at a lower dose even, but no was the answer. I am willing to take the risk of AML and stay on it, however this wasnt even raised as an issue at the consultation to come off Olaparib. Please, if anyone has any thoughts or ideas or anything I could present Onc with to remain on Olaparib I would be so very grateful. Thankyou.
2 years up on Olaparib: scared. Onc says I cant... - My Ovacome
2 years up on Olaparib
My onc at UCLH did mutter I could stay on it for longer than 2 years, when I started 6 months ago. As I am now at Marsden and still only at 6 months no further chat on time subject. I suggest you ask fir second NHS opninon at specialist cancer hospital, e.g. with Marsden’s Dr Susanna Bannerjee, who started the successful Olaparib trials off, I believe. In this world, if you don’t ask, you don’t get. You are entitled to a 2nd NHS opinion. Good luck.
Hi Trickysite,Many thanks for your response, massively helpful. I am at the Marsden, (previous was UCH) so not sure where I’d go for 2nd opinion? I’m interested to know why you changed hospitals, I know why i did! Are you on the PARP after frontline and are you also on avastin with the PARP? Perhaps we can message privately but I’m not sure how to do that!
I have Ehlers Danlos Syndrome (muscle issues) which I think resulted in both the Marsden (Dr George) and UCLH advising against Avastin so I am on Olaparib alone.I am BRCA 2 and HRD. And I am experiencing muscle problems on the Olaparib........My consultant at UCLH was Dr Michael Flynn and he mentioned extending the Olaparib as a "possibility" - it was an aside.. Maybe Ovacome or Macmillan can advise you where you can find research information about extending Olaparib and wave it under your consultant's nose and ask in the nicest possible way whether is there any medical reason rather than cost why you cannot be extended??? Or ask for a referral to Dr Flynn, although he may well concur. He used to be a registrar to an onc consultant at the Marsden. Other than that, it is a matter of researching another onc who can give you an Olaparib recommendation. I am happy to PM and am sure ovacome will explain to you how to do it. I am not sure and in a bit of rush at mo.
Hi Rose,
I have private messages with friends on here just go to who you want to pm press press there profile and message will come up then its just its just one to one. I will pm you to show you. Good luck with your treatments money shouldnt come into it with our lives.
Live & hugs SheilaFxxx xxx
Do you mind if I ask how you transferred to Marsden? Are you private now or still NHS? I always assumed you couldn't change NHS trusts? I'm Imperial at the moment. I don't have any reason to change right now but it's always good to have all the information I believe for the future. Thank you.
I had been treated at the Marsden 20 years ago for breast cancer on NHS and asked to be treated there again the minute I had an inkling of ovarian cancer. To my surprise, I was turned down by the Marsden and decided on UCLH. Just before my oc diagnosis when still in blissful ignorance of my stage 4, and quite unrelated in terms of timing, I had taken a BRCA test for the benefit of my descendants. Marsden had been happy to do the BRCA test. Wallop, diagnosed with OC. Wallop, a few weeks later BRCA came back positive. I was at UCLH by now but Marsden onc invited me to personal interview which I thought was to discuss my BRCA but at which she was equally keen to discuss my OC and my Ehlers Danlos and very kindly said I could always come back to her with further questions. Which was wonderful. Six months later, after chemo and op, I had to spend a week in UCLH because my sodium dropped, during which time UCLH misprescribed me 5 drugs. I wrote to my lovely onc at Marsden and said I had lost confidence in being a UCLH inpatient. She very kindly said I could switch to Marsden. I am afraid this long story is not going to help you. But, to repeat myself, from another of my posts today, if you don't ask, you don't get, so no harm in asking......
Wow! It just goes to show just how much you have to be your own patient advocate! That's good to know, thank you! Sending you many best wishes going forward! x
Truer word never spoken! X
Just wanted to add that it was not Dr Michael Flynn who misprescribed me while I was an inpatient atUcLH. He was great.
Hi Rose,
Sorry I don't have much to offer in terms of your question regarding how to stay on Olaparib longer, but I am curious as to whether you are BRCA+? My partner will be coming off chemo soon for her 1st recurrence and a PARP was mentioned though she is not BRCA+.
I hope you find a way to stay on it for a longer term though.
Thanks in advance!
Stephanie
Hi Stephanie: I am somatic BRCA2, which is just the tumour tested positive for BRCA, I’m not therefore a carrier. There are several other PARPS which are recommended l if you dont have BRCA. Lots of people feel they are a game changer/life saver, I’m one of them! Good luck to your partner and yourself , Rose
Good luck to you as well! It's a tough journey but good to know there are ladies here to talk to. Hi, I am not BRACA positive and came off chemo for first diagnosis earlier this year. I am on Avastin which limits blood supply for new growth which is working well (CA125 dropping further). I could also be on Niraparib which is a PARP inhibitor because I am HRD positive but that result came back rather late and I've decided with Onc to hold that in hand in case of a recurrence. Has your wife had an op and been analysed for HRD? I found I had to keep mentioning this, but it can be really important to know. Best wishes to you & your wife.
Hello Morini,
Thanks for your feedback! My partner was only tested for BRCA through her blood and not her tumor. So unfortunately we don't know if her tumor is BRCA positive or HRD positive. I think now though some do prescribe parps to ladies who are BRCA - and have recurred. My partner will be finishing her 2nd line chemo at the end of August so parps are maybe an option. Just not sure how effective they will be.
Thanks for the wishes! Wishing you well too.
I have been taking Niraparib for 25 months. Was doing great until about 22 months when cancer came back. Onc says Niraparib is doing a good job of slowing it down. I am BRCA negative but dont think i have been tested for HRD. What is this?Good luck x
It's sort of a dna repair fault that isn't BRACA I think. I'm not sure how long they've been testing for this, I'm thinking maybe it's quite recent?
Hello all,
Thank you very much for all your supportive messages on this post. I just wanted to add some further information which I hope will be helpful around your queries about HRD.
HRD stands for Homologous Recombination Deficiency. One of the ways in which cells repair damaged DNA is called homologous recombination. There are a number of different genes which, if mutated, can reduce a cell’s ability to carry out homologous recombination. This is called homologous recombination deficiency, or HRD. BRCA1 and BRCA2 gene changes are both types of HRD (homologous recombination deficiency) but some people who are BRCA negative, are positive for other types of HRD. HRD testing is often done as it may be taken into consideration for treatment choices.
If you would like to find out more about HRD, Dr Rowan Miller recorded a webinar for Ovacome as part of our ongoing Staying Connected series about this. I will put a link to this here: ovacome.org.uk/ovarian-canc... . The webinar is called ‘What is Homologous Recombination Deficiency (HRD) and how does it impact ovarian cancer?’
If you would like to read more about targeted therapies such as PARP inhibitors or Avastin, and the significance of HRD, we have some information about this in our targeted therapies booklet: ovacome.org.uk/targeted-the...
Please don’t hesitate to get in touch if we can help with any further information about this or if you would like to talk anything through. Our support services are available Monday – Friday 10am – 5pm and you can contact us by calling 0800 008 7054 or by emailing support@ovacome.org.uk.
Best wishes,
Cathryn
Ovacome Support
Thank you, that's really clear and helpful x
Hi Rose, I'm sorry to hear how upset you are with being taken of your medication. You do get to rely on it as a comfort. I would just like to say that I was never offered any maintenance as it wasn't available when I had oc. I am still around to tell the tale so I hope your medical team have confidence that you will be okay without it. Would you're GP prescribe it for you?
I hope you get some good replies to help your confidence in the future. Also, ask for a second opinion. Good luck. xx
Hi RoseMSI suspect your only route would be a trial. Funding is always an issue in cancer care…I was offered Avastin after first line but only for 18 sessions as at that time it was the new expensive treatment.
I don’t know what stage you are but even at stage 4 I managed 4 and a bit years without recurrence.
So it was never proved one way or the other that Avastin had made a big difference.
There’s no way of knowing if you might have been fine for the last two years without the Parp inhibitor.
Lots of us feel bereft when treatment ends and worried about the future that doesn’t necessarily mean that staying on a cytotoxic drug is a good idea. I am just playing devils advocate here but is it worth considering what benefits a drug free period might have for you?
Hi RoseMSI reached my two year time limit on Olaparib in December 2021, I had some left over having had a break or two and reducing the amount I took sometimes, I told my CNS I had enough tablets left for another 2 months, boy did I get told off. She sent a letter to everyone possible and spoke to me as if I was 5 years old, explaining the dangers, of which I was fully aware and accepted the responsibility for what I was doing. My CNS asked me what I was going to do when they had gone, and told me I needed to get on with my life.
Well it’s 6 months since I stopped taking Olaparib and CA125 is still the same, so all good.
Sorry I can’t help anymore than that but I know the mighty struggle you are going through so sending you lots of love.
I think sometimes the people having these conversations with patients need to understand the stress and anxiety that stopping ‘ amazing life saving medication’ can have on us, I was just like you terrified.
NOW we must go forward, and look at all the amazing ladies on this site who have ploughed ahead and by far exceeded their sell by dates, as have I .
Look after yourself
Hey RoseMS, I too have just finished 2 years on parps - well it's been about a month now. I also have been having anxiety around recurrence.
But remember, the reason for that parps are prescribed for 2 years and not longer isn't about the huge cost to the NHS.
It is because the 5 year Solo 1 clinical trial showed that after two years on parps the recurrence rate doesn't change when you come off them.
So there is no benefit at all for continuing in most cases. Of course, there are exceptions and studies continue.
So now I've finally finished treatment, it's like I'm walking a tightrope and someone has snatched away the safety net. BUT the data shows that the protection they afforded stretches long after they stop.
I was told that everyone faces this type of anxiety when treatment ends.
I'm trying to regain the sense of control the parps gave me through a healthy diet (losing that 3-stone weight gain ideally) and exercising more. So far 3lbs down. But that have been sweated out on Tuesday, to be honest.
Of course, you can get a second opinion, but for me, the Marsden who ran the trial, understand the data best.
I was told by my oncologist that I qualified to continue with Olaparib after the 2 year deadline.I am BRCA 2+ve and my cancer reoccurred after I had finished Avastin. They then suggested Carbo/Caelyx and when I had finished that I was started on Olaparib just over two years ago.My oncologist said that it was a very expensive drug (approx 5K per month) but was really pleased for me that according to criteria I was able to continue.Hope you will be able to as well xx
Hi there! Thoughts with you as i understand how concerned you must be .Do agree a second opinion might be useful. Just to say Im brac negative and started niraparib and my patient contract mentions up to 3 years treatment unless disease progression or toxicity issues.I realise different parp inhibitors,and different brac status may have different protocols , or nice guidance ,but certainly worth exploring further. Hope you can find an answer. x
Hi RoseI totally understand your anxiety and I totally second the reply from DianaPrince above which I hope has given you some confidence going forward.
The 2 year treatment plan is based on clinical evidence not on the price of the tablets.
I finished my 2 years on New Year's day this year and I spent probably 6 months before that worrying about it.
I also asked about continuing after 2 years but as I didn't have any residual disease I was told it wasn't necessary.
I have 3 monthly bloods and so far so good.
Of course I was very anxious early on but the 1st normal result helped a lot. Gradually I'm feeling more confident and actually not having to take the tablets now is a relief.
It's only natural for you to be worried but I think as time goes on you will find these feelings become more manageable.
I tell myself if I have a recurrence I can tackle it now and I know Olaparib is still out there.
All the very best to you.
Liz x
Usually only continue after 2 years if you’ve never been free of disease Jenifer
I was on Olaparib for a while but only for a few months but have now been taken of after being put on lower dose as it would have been dangerous for me to stay on it because my neutrophils were so low I am now on watch and wait which is frightening as the drug was keeping the decease at bay hope you get help in the long runxx
Hi there, I was on Olaparib for two years and finished early February this year. I was speaking to my Onc nurse about the fear of being without it but she assured me that there is a lot of evidence stating that the effects of the drug keep on working to keep us NED for years to come! My last blood test ten weeks ago was still good.
Hope she’s right!
Best wishes
Denise
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