Olaparib experiences - your comments needed - My Ovacome

My Ovacome

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Olaparib experiences - your comments needed

OvacomeSupport
OvacomeSupportAdministrator

Hello All

I've two submissions to make to NICE this month regarding Olaparib availability. If any of you have experiences with it that you'd be willing to share, please could you either comment below or send me a private message?

I won't need to include any identifiable details such as your name or where you're being treated.

I can then include your comments in our submission to request Olaparib availability and it will make for a much stronger submission.

If you have any queries please do get in touch.

Thank you in advance for your help,

Anna

Ovacome Support Service Manager

10 Replies

I was offered Olaparib until I told my Oncologist that my insurance would run out before treatment was complete, as my husband was retiring, it was then no longer an option being offered, she said the NHS would not fund it.

OvacomeSupport
OvacomeSupportAdministrator in reply to lyn1987

Dear lyn1987

Thank you for sharing this. I'm sorry to hear Olaparib won't be available for you going forward. Macmillan have some information on funding treatment if it isn't available on the NHS, which you may want to discuss with your oncologist, here: macmillan.org.uk/informatio...

Would you mind telling me a bit more about how your experience was of taking olaparib? Did you have many side effects? Do you think it made a difference to your health? This will help inform the submission.

Best wishes

Anna

Hi there, I had olaparib after 3rd line chemo. It gave me 12 months of good quality of life, precious time spent with family enjoying time together and feeling well. I am so grateful to have been able to access this drug which was effective for me for that period of time- no amount of money can buy precious time and I think that nice should be looking beyond the financial aspect and concentrating on quality of life whilst dealing with recurrent disease. My cousin who sadly is no longer with us , also managed 18 successful months on olaparib, and also felt well with very good quality of life.

OvacomeSupport
OvacomeSupportAdministrator in reply to jan50

Dear Jan50

That is really helpful, thank you very much for taking the time to share your experience. We always emphasise quality of life/wider impact in our submissions and this will really help support that.

Best wishes

Anna

Hi Anna. I think I misunderstood what you were asking. I have been on a trial for Olaparib for 4 years 11 months. Although its a double blind trial my onc is in no doubt I am on it due to various side effects. Its given me a life, a chance to work full time, see grandchildren born and grow , a chance to travel, feel well. Basically a life, is there a price that can be put on that? Me being on this has impacted not just me but those who love me. Kathy x

OvacomeSupport
OvacomeSupportAdministrator in reply to Katmal-UK

Dear Kathy

That's really helpful for the submission, thank you very much for your feedback.

Best wishes

Anna

Hello Anna

First of all, I would like to say a big thank you on behalf of all the ladies on here and their husbands/partners for all you do for us. You do a fantastic job.

My wife Suzanne, who has a faulty BRCA2 gene, has been on olaparib for 13 months now and hoping to follow in Kathy (“Katmal”)’s footsteps. It certainly is a wonder drug for some ladies and worthy of further research to find out why some do so well on it. I guess it isn’t as simple as gene sequencing.

Suzanne was diagnosed in Mar 2013 and, after debulking surgery, started chemo (3 weekly carbo/taxol) in May 2013. Finished chemo in Aug 2013. First recurrence in Oct 2015 then chemo (weekly carbo/taxol) from Nov 2015 to Mar 2016. Second recurrence confirmed by scan in Jun 2017, although CA125 started rising in Feb/Mar 2017. Chemo (3 weekly carbo/taxol) from Jun 2017 to Sep 2017. Started olaparib Oct 2017 when her CA125 was 24. Latest CA125 result (Nov 2018) is 11.

Suzanne found chemo hard to tolerate and this got worse with each successive round. The side effects of olaparib have always been much much less then chemo and have reduced with time, such that Suzanne now feels very well. We are aware that olaparib is very expensive and are extremely grateful that the NHS is funding Suzanne’s treatment and that she is now able to enjoy a good quality of life once more.

Although olaparib costs the NHS many thousands of pounds, there must be a significant saving from not providing chemotherapy (both the cost of the drugs and ancilliary meds and the cost of the medical staff and facilities involved in providing chemo), or at least delaying chemo, for the majority of the patients prescribed olaparib. We understand that AstraZeneca provide olaparib free of charge after 15 months and hope that this continues to be the case.

Whether it is possible to negotiate a better deal with AstraZeneca I cannot say. I would assume there is some competitive pressure in the market place due to the availability of other PARP inhibitors such as niraparib and rucaparib, although I am not aware of any studies to ascertain which PARP is best for any particular sub-set of ladies. Perhaps the NHS could persuade AstraZeneca to provide olaparib free of charge after 12 months instead of 15 months?

Finally, with such good results coming through both from NHS funded patients and from patients on the various trials with olaparib, surely the time has come to invest further in this wonder drug. It seems to me that the key to its cost effectiveness is to put more resource into identifying which patients are likely to respond well on which particular PARP inhibitor, and perhaps also investigate whether there are any other relevant factors such as diet, obesity, or taking other (cheap) drugs such as beta blockers or NSAIDs.

Kind regards

Woody

PS Sorry this is so long!

OvacomeSupport
OvacomeSupportAdministrator in reply to WoodyB

Dear Woody

Thank you very much for taking the time to give such a detailed reply. It's great to hear that Suzanne is doing so well.

I think you're right, it will be so useful to know why some women respond incredibly well to different treatments, which then don't work as well for others. PARPs are still new technology in lots of ways and as we understand more about them and about the different mechanisms involved hopefully medicine will become more effective and more personalised.

I certainly hope that NICE and AstraZeneca can reach an agreement on pricing which means Olaparib is made routinely available. We will use your comments and the other comments made to argue in our submission that the impact on quality of life needs to be taken into account for a full consideration of what Olaparib availability will mean for women and their families.

Thank you again for taking the time to let us know about Suzanne's experience of taking the drug and the impact for you both.

Best wishes

Anna

Many thanks Anna and good luck with your submission.

I have thought of yet another possibly relevant factor. I believe that chemo works best when it has been some time since your last chemo (and works less well if the interval is short). If olaparib delays a recurrence, it seems to me that the next chemo is more likely to be effective.

You mention quality of life. Suzanne's (and my own) quality of life has been so much better since she has started olaparib. She is back to walking regularly again and we have been on several holidays and short breaks in the past year. Making up for lost time!

Kind regards

Woody

OvacomeSupport
OvacomeSupportAdministrator in reply to WoodyB

Dear Woody

Thank you for your further comment. The experiences of quality of life improvements are exactly what NICE want to hear from us so I will be sure and include them in our submission.

Wishing you and Suzanne many more enjoyable holidays ahead!

Best wishes

Anna

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