OLAPARIB 2 year limit

[RoseMS]

I would like to ask if anyones ONc has allowed them to stay on OLaparib past their 2 year maintenance after frontline please? If so, what criteria, I.e. patient choice or still suspicion of disease etc? I realise the protocol recommended is 2 years but that was apparently due to length of trial data. I would like to remain on lt another 6-12 months but am told it’s too expensive. I realise about the risk of blood cancer but it is apparently less than was originally thought, so actually very rare. Any information or your thoughts would be gratefully received.

[Lyndy]

Hi RoseMSI am on Olaparib but unlike you I am having it post recurrence and I have been told there’s no limit…as long as it’s working.

I asked about this as I had heard about the 2 years. The funding protocols ensure access to new but expensive drugs while trying to ensure the NHS doesn’t run out of money…it’s always a compromise.

I had a friend early in my journey who was a master at finding opportunities and advocating for herself and others. She persuaded a drug company to pay for her for a while (on Avastin when it was new)and they flew her out to the US to a convention! This could be a route for you if you feel really strongly about it…but be warned, it’s a full time job hunting down every single opportunity to get the new drug or on to the trial. Best of luck xx

[mrstadpole]

I am also having olaparib post reoccurrence and have been taking it for just over two years.I know the criteria is very strict as they are so expensive.I am also BRCA 2+ve.I will be able to take it as long as it continues to work.

[Frenchhouse3]

Hi there, I was on Olaparib for two years until the end of January and have so far been clear. I am also anxious about being off it. However, my Onc nurse told me there is strong evidence that it continues to work for several years after stopping the tablets according to the latest data. My Onc also said if I had recurrence I could go back in it. Hope this helps ease your mind.

( I’m a somatic BRCA2).

Best wishes

Denise

[RoseMS in reply to Frenchhouse3]

Thank you Denise, thats reassuring. May I ask what and when was your diagnosis and which hospital area you are based please?

[Frenchhouse3 in reply to RoseMS]

My diagnosis was stage 3C of Fallopian tube ( the common type! ). My tumour was BRCA 2 positive but I don’t carry the gene. I’m in Bristol .

I was diagnosed in June 2019

Xxxxx

[RoseMS in reply to Frenchhouse3]

I am also BRCA 2 somatic, diagnosed 3c HGSOC December 2019

[Starbarn]

Hi RoseMS. I’m on a trial which includes olaparib and will stay on it until it stops working . I believe the cost it’s in the thousands per month. Do you have medical insurance or is it possible you would be able to contribute towards it? Regarding the blood cancer, I was told when I started the trial that they believe that the more chemo rounds you have prior to starting olaparib the higher the risk.

They also believe that the parp continues to be active once you stop taking it.

But again we are all different and it’s early days with parps.

[RoseMS]

Have asked about private prescribing but they said still wouldn’t be given regardless.

[delia2]

Hi. I’m on it for recurrence and live in the US. The two year limit isn’t just cost; it’s because the SOLO1 trial was based on that. Personally I envy you going off it after two years in part because it will still work for you later if you do have a recurrence. Once it stops working it’s no longer an option. The data from SOLO1 shows long term results from the two year treatment. Xx

[RoseMS in reply to delia2]

Hi Delia. I’m intrigued about what you say. I’m aware of the SOLO/2yr maintenance protocol as that was the length of the trial follow up. But your statement : ‘it will still work for you later if you do have a recurrence’ puzzles me! Please would you expand or direct me to what study this may be. And do you mean,if it stops working whilst still on it, a patient cannot go back on Olaparib after chemo treatment ? If not, why would this be? Thanks, Rose

[delia2 in reply to RoseMS]

Hi If you have a recurrence while on a PARP it means your cancer has found a way around it and it will no longer work for you. There are trials combining PARPs with other drugs trying to overcome this problem and hopefully to make PARPs work for non HRD people as well. If you google overcoming PARP resistance you can probably find them.

[DianaPrince_]

Just to be clear the trial was 5 years. The treatment length was two years. The data showed when women stopped after 2 years they didn't recur in the following three years. (The 5 years was the length of the trial. And this data only came out 2 years ago.)

And they think it might mean that's it curing people if used as a first-line treatment. Bringing down the recurrence rate from 80% at stage 3/4 to 50% or even less.

That's why there is no clinical benefit to continuing if you're NED. That's why your Onc won't prescribe.

However, if using it when you have recurred it can help reduce or keep your cancer stable in the long term maybe forever.

Incredible news on both fronts.