Hello ladies. I have a question about Olaparib. Is it covered by the NHS? Is it for free or you have to pay for it , or some part of it?
I am new to the UK NHS and still don't know how it works.I am waiting to see an oncologist now, after finishing chemo.Is it the oncologist who prescribes it? How long does it take to get it after the examination and prescription by the oncologist?
Please, anyone if can explain to me,I will be grateful.
Thank you.
PARPS inhibitors are used for maintenance treatment. Yes, all are prescribed by the oncologists.
Once diagnosed, it is either 1/ surgery or 2/chemo then surgery followed by more chemo.
After completing this first line of treatment and having a good debunlking surgery whereby all visible signs of the disease have been removed, you'd be eligible for PARPS.
Olaparib is restricted to those with BRCA 1 and BRCA2 mutations (germline (blood test) or the tumors' (tested after the surgery).
The genetic testing for BRCA is also prescribed/referred to by oncologists.
Niraparib is prescribed for those who are BRCA negative.
Rucaparib after second line of treatment for both BRCA positive and negative.
All are provided free by the NHS and under the NICE guidelines.
You can discuss it all when you meet your oncologist who will explain the appropriate plan for your treatement
I hope this helps and also hope all goes very well for you.
Thank you so much for your reply. It is very helpful. My oncologist (in another country) says that Olaparib does not prolong the overall survival, it just prolongs the time for the disease to reoccur. Is that so, what is your information about that? Also, he said that Olaparib does not decrease the risk of developing breathing cancer. That's not good news, taking into account that it has very serious side effects. What do you think?
Agree and this was my understanding, too, that all treatments, with advanced stages of Ovarian Cancer, prolong/extend the gap between recurrences.
Advanced stages are non-curable but treatable.
Like with all OC treatments it is on a case by case basis. Many have responded very well with Olaparib and have been NED (no evidence of disease) for quite some time. Some weren't that lucky.
It also has side effects, like all medications.
As for the Lungs toxicity, "breathing cancer"?, this is one of the very long-term side effect. Very few stayed on it beyond two years.
It is worthy a try if this the only option that has been offered, once you finish chemo.
You don’t have to have attained NED to be on Olaparib BW
Jennifer
I am sorry, I don't quite understand what you mean. Could you please explain? Thank you!
Oh , sorry . Probably me , but on reading posts , I wasn’t sure it was clear that if you have never been clear of cancer you can still go on Olaparib. It is correct it is not a cure , but means you can live with the disease . Every person will be unique in how this works for them .It can be a miracle drug
Best Wishes
Jennifer
Thank you very much! I hope so! Right now I am struck by the news that this disease is not curable. I had hope that after chemo I will be cured. Now the fact that it might cone back any time just hit me. I can't stop crying. I wish you good luck and health!
Oh please don’t cry . I feel terrible. There are many factors here . It may be that you can achieve a permanent remission. People do . Your oncologist will give you the correct information, she will be the person who knows you and direct your treatment accordingly. Be sure though that the NHS will always do it’s best for you and for now it will not cost . I’m sending you lots of positive wishes
I am on Olaporib with Avastin after my 1st line treatment- all on the NHS. I'm not BRACA positive but I am HRD positive which is another test they do . All good with my maintenance treatment so far. Good luck and very best wishes xx
From reading this site,I think there are ladies who have been on Olaparib for 7+ years.
You are correct, ive been on olaparib for 8 years 7 months. X
It helps to clarify that you've been on Olaparib for 8+ years simply because originally you've been on a clinical trial involving Olaparib and they have, after lots of efforts on your part, extended the treatment that was threatened to be stopped after the trial had ended.
Most unfortunately, those who have been on Olaparib NHS/NICE route had their treatments stopped by the end of year 2.
Although it has been working, the argument was long-term associated and damaging "side effects".
My personal view it is all about budgets and money spending.
Hi, your perception in unfortunately totally incorrect. I took part in the SOLO2 trial which was a double blind trial. Once the trial ended and it was officially confirmed that I was indeed on Olaparib I was not threatened with withdrawal of treatment but given the choice to continue taking it or not, completely my decision. I have now been offered the chance to go onto the ROSY-0 study where basically I will continue to receive Olaparib whilst it is of benefit or I decide I no longer wish to take it. Even if I decided not to partake in the ROSY-O trial then I would still have received Olaparib.
When drugs are approved for use on the NHS, guidance is developed by the National Institute of Clinical Excellence and here your questions may be answered nice.org.uk/guidance/ta620/...
My understanding is that you have to be BRCA positive, or HRD positive. I am not BRCA positive but my tumour was found to be HRD positive so I am about to start it. Approval is given on consent form created by my Oncologist. I am being prescribed this alongside Avastin. As others have said, your treatment plan will be formulated by your oncologist. Wishing you all the best x
Thank you very much!! Wishing you all the best, too!
Hi. Ovarian cancer can be cured for a certain percentage of people depending on your stage. For stages 3 and 4 there’s a 75-90 percent chance of recurrence. Once you have a recurrence you are considered incurable but treatable. PARP inhibitors are used differently depending on whether they are used after your frontline treatment or recurrence. The SOLO1 trial did show that Olaparib prolonged lives and may have cured people, but it takes a long time to show a cure and it hasn’t been long enough. Good luck with everything. Xx
Good morning all
Thank you for your responses to Vilinew’s questions.
There are a few points I just wanted to clarify which I hope will be helpful:
- Olaparib can be prescribed for those with the BRCA gene changes or those who test positive for HRD. Ovacome held a webinar with Dr Rowan Miller all about HRD and how it impacts ovarian cancer treatment which may be of interest and is available here: youtube.com/watch?v=dcNRNU6...
- Niraparib can be prescribed for those with or without the BRCA gene changes, regardless of HRD status.
- PARP inhibitors can be prescribed for those with residual disease.
- Olaparib has shown increase in overall benefit vs placebo in clinical trials.
There are various eligibility criteria for different PARP inhibitors that your oncologist will be able to discuss with you, whilst considering your own individual circumstances and medical history.
The Cancer Drugs Fund Managed Access Agreement for olaparib for newly diagnosed advanced BRCA-mutated ovarian, fallopian tube or primary peritoneal cancer, after response to firstline platinum-based chemotherapy can be found here: nice.org.uk/guidance/ta598/...
The Cancer Drugs Fund Managed Access Agreement for Niraparib for maintenance treatment of advanced ovarian, fallopian tube and peritoneal cancer after response to first-line platinum-based chemotherapy can be found here: nice.org.uk/guidance/ta673/...
In addition, Ovacome have an information booklet about targeted therapies, including PARP inhibitors, available here on our website: ovacome.org.uk/targeted-the... - We can send this, or any of our other information resources, to you in the post free of charge if you prefer - Just let us know.
I hope this information is useful. Please don’t hesitate to get in touch with us if you have any further questions, or if there’s anything we may be able to help with. You can call us on 0800 008 7054, email support@ovacome.org.uk or message us directly through this forum. We’re here Monday – Friday, 10am – 5pm, to respond to enquiries about ovarian cancer, provide relevant information resources or just have a friendly chat.
Best wishes
Annie – Ovacome support
Dear Annie,Thank you very much for your reply and the information given. It's very helpful. I will read and most probably I will call you, as I have more questions and concerns.
Good morning Vilinew
No problem at all. It's good to hear that the information above has been helpful.
Please do contact us if you would like to talk anything through.
Best wishes
Annie - Ovacome support
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