I am on olaparib and doing well have been told ... - My Ovacome

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I am on olaparib and doing well have been told after 2yrs I will come off olaparib and it will be watch and wait has this happened to other

1946val profile image

Iam on olaparib and doing well have been told after 2years I will come off olaparib and it will be watch and wait

Has this happened to any other ladies

Many thanks for a wonderful and most helpful site

21 Replies

Thanks for your post. I'm very interested to see the replies. I've been on Olaparib for 18 months and have also been told it will be stopped after 2 years. Naturally I m feeling very apprehensive about stopping the tablets. I asked my Dr about it on Friday. He says the evidence shows that effects of Olaparib go on after stopping and that a good proportion of the women on the original trial are still free from recurrence. You've probably already Googled the solo 1 trial and seen the graph.

I also posted a similar question to yours on a parp Facebook page a while ago. Because the drug is so new most replies were from women like us who have yet to reach the 2yr mark but I also had a couple of replies from women who had stopped at 2 years and were doing well.

How much longer do you have to go and how are you feeling about stopping?

Liz x

1946val profile image
1946val in reply to Jacky5

Thanks jacky for replying I feel more confident after what you have said I suppose it will be watch and wait iam due to stop next February

Rankij11 profile image
Rankij11 in reply to 1946val

I guess this could make sense if you were disease free starting treatment , but what if you have never been disease free ?? And the Olaparib just holding the disease . There are people on here been on it longer (Katmal ? Can’t remember exact user name)Jennifer

1946val profile image
1946val in reply to Rankij11

Thanks Rankij for your reply Ito have read about some ladies being on olaparib longer than 2yrs but don’t know the reason for this iam braca 1not sure if this is why Take care hope you are doing ok

Jacky5 profile image
Jacky5 in reply to Rankij11

I looked at the NICE guidelines and from what I read I understand Olaparib can be continued beyond the 2 years under certain circumstances including if the patient still has evidence of disease. I guess it will have to be measurable.I think the ladies who have been on Olaparib long term are those who were given Olaprib for recurrence rather than after first line treatment.

My Dr told me currently funding is only available for 1 course of Olaparib but that may change as more research is done .

X

Rankij11 profile image
Rankij11 in reply to Jacky5

That’s useful , thankyou. Hopefully you young ones will stay clear after. Jennifer

Jacky5 profile image
Jacky5 in reply to 1946val

Hope it goes really well for you and continues working for years to come . All the best.

Liz x

I’m also really concerned about stopping, about 9 months to go to my 2yrs. How can they really know from a CT scan if we are ‘NED anyway? Actually they cant. I was wondering about titrating down my Olaparib, omitting now the odd pill to have a bit of extra time with them when the prescription stops at 2 years, should I make it that far. The Onc has said I will definately come off at 2 years. I’m in UK and this is also a cost consideration within the NHS. Its great that some women stay well after the 2 years but not all do. It seems to be a gamble that we ourselves have no say in. I for one would prefer to continue Olaparib for longer.

Rankij11 profile image
Rankij11 in reply to RoseMS

Think I’m going to do a bit of research into what happens withthose who are not NED ??? Hope you are Onwards

Jennifer

RoseMS profile image
RoseMS in reply to Rankij11

That would be good to know about Jennifer. I had stranding after frontline on scan. A Jnr doctor explained it was ‘a tiny bit left of cancer’ the oncologist I was with at the time overruled and said it was not. Who knows? I havent a great deal of trust with drs at times. They certainly dont know everything! Rose M

1946val profile image
1946val in reply to RoseMS

Thanks Rose for your comments they were very helpful as you quite rightly say we have no say about the length of time we are on olaparib I wondered if it was financial or age?

Hope you are doing ok

RoseMS profile image
RoseMS in reply to 1946val

I did wonder about the age thing when I was denied Avastin at frontline but didnt consider it with the PARP, but now you mention it? Honestly it does seem up to individual drs about resources, not always the patients best interest, my cynical opinion, maybe, sorry! RoseM

Are you brca?

1946val profile image
1946val in reply to Ruebacelle

Yes iam braca 1

I have been told I would be able to continue after 2 years but I am having Olaparib after recurrence. I am BRCA I, stage 4 hgs and not NED at starting Olaparib. x

1946val profile image
1946val in reply to Lyndy

Thanks Lyndy. For your reply iam braca1and was Ned when I started on olaparib did not realise if you went on olaparib after recurrence you stayed on it longer is that for life?The whole set up is mind blowing but glad you are being kept on olaparib may it keep you safe and well best wishes Val x

Hi. The Solo1 trial was for maintenance after frontline and if you are taking it after frontline you go off after two years. Others like myself are on it after recurrence and follow the solo2 results in which people stay on it until recurrence or it’s intolerable.

1946val profile image
1946val in reply to delia2

Thanks delia for the information Hope you are doing well on olaparib and long may it last

Best wishes Val x

I've just done a bit more Googling and found information on the Oreo trial which looks at re treating with Olaparib after a recurrence.It's great news that trial is being done. Fingers crossed Olaparib will be shown to be effective a second time.

targetovariancancer.org.uk/...

liz x

OvacomeSupport profile image
OvacomeSupportAdministrator

Hi everyone

Thank you all for your responses to 1946val’s question about Olaparib and for sharing your experiences.

I wanted to clarify that the two-year timeframe for Olaparib is not due to NHS cost factors, nor is this determined by age. This is a clinical decision which is made considering the personal benefits and risks posed by the continuation of treatment beyond the two-year period. The Cancer Drugs Fund Managed Access Agreement has some information about Olaparib, including details on eligibility, available here: nice.org.uk/guidance/ta598/... - There is focus on two-year treatment plans found on page 5 of 12. I hope this will be helpful to you.

It’s really important not to change doses of medication without having a thorough discussion with your doctor. Talking through your concerns with your clinical team should ensure you get tailored guidance to your own individual situation.

If you would like to talk about this further with a member of our support team, you can contact us directly through the forum, via our Support Line 0800 008 7054 or 07503 682311, by email at support@ovacome.org.uk, or via the Instant Chat function on our website. We are also available to talk by booking an individual video call on Zoom or Skype. All our services are available Monday – Friday, 10am – 5pm. We’re happy to chat, even if you don’t have a particular question.

Best wishes

Annie

Ovacome Support

Thank you so much Annie for clarifying about the length of time ovarian cancer patients are on olaparib and the reasoning for thisThis information will help a lot of people

Many thanks best wishes Val

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