I'm reading what is being said about BRCA and Lynparza/ Oliparib and need someone to clear it up for me.
Is this the drug you have for recurrence?
If it is, does it have to be taken within a time period of last chemo?
If it does why didn't they give me a BRCA test until 5 years after I finished chemo?
You'd think I'd know about this sort of thing after all these years but hadn't even heard of it all until last year.
Thanks for any help. Best wishes to everyone, Zena x
Hello Zena - I had my BRCA test on Monday, if positive you have to start within 12 weeks of your last chemo, sorry don't know why. I am not going through recurrence. It is all a bit of a mystery to me, like you I wondered why I wasn't tested sooner, can only assume the criteria for qualifying for the drug has recently changed. Hopefully one of the clever ladies on here can enlighten us. xx
Thanks Lyn, that's what I'm hoping too. x
Hi Zena Olaparib is the drug I am on for the SOLO2 trial. The one I have been on now for 5 years 1 month. I was given the BRAC test at the get go because of family history so have know more or less from diagnosis that I had the BRAC gene. I had to start the trial within a few weeks of completing chemo, certainly not as long as 12. Thinking back it was probably within 6. To meet the criteria of the trial I had to have had 2 recurrences but obviously criteria for receiving as a maintenance may have changed. Feel free to ask any questions - not sure how much info I have lol xx Kathy xx
I think our knowledge of the BRCA Mutation has been pretty dismal until recently.
I only found out about it through The Ovacome forum part way through my treatment.
Even then, I did not know about it’s connection to the Ashkenazy population, of which my family and many, many families all over the world, are related to - the Jewish diaspora that fled or escaped from Eastern Europe.
Because no one can be sure of their family heritage, all women should be offered the test, but especially those with one or two Jewish parents.
I had to ask for the test, then demanded it when my sister had a recurrence of Breast Cancer, last year. Because she lived in Los Angeles, a city with a large Jewish population, she was tested immediately and came up positive.
Even after multiple letters from my Oncologist to the Bristol lab, I wasn’t offered the test until 6 months after I finished First Line treatment. In the mean time, because I have an adult daughter, I paid for a private test for both of us.
As I suspected, we were both positive for BRCA1.
Now she can have vital risk-reduction surgery, so she never has to face what we here have had to endure.
Just to give another perspective, scientists and researchers have known about this mutation and the effects it can have for decades, and there has been a test available for more than 20 years, yet my sister was not offered the test until her first recurrence. This is mainly because she previously resided in Denver, Colorado, a town with a low Jewish population.
If she had had the test then, I probably would never have got Ovarian Cancer and she would not have to had to go through a terrifying recurrence of her cancer.
About the BRCA MUTATIONS:
Having it means you are much more likely to get a reproductive cancer, Ovarian or Breast cancer, and also melanoma and Pancreatic cancer, and for men, Prostate cancer.
The blessing is, that those with the mutation are much more responsive to Platinum based treatment and only within recent years, have been found to be extremely sensitive to PARP Inhibitors.
All PARP inhibitors have been shown to be effective to the same extent, but Olaparib, the first one to be trialed, had fewer bad side effects. But Niraparib is fine, just a bit tougher with side effects, until the right dosage is determined.
These PARPS are taken at home, in tablet or capsule form, each day, but you are closely watched by your team, so your side effects can be monitored.
PARPS are extremely expensive, I think I heard something like £3500 per month, around £42,000 a year.
Not something many of us could afford to pay for, so we are very thankful that it is being offered after first recurrence here in the UK.
Naturally, I think it should be offered to all BRCA positive ladies after first line.
And, as it has been shown to be effective for many other ladies without this mutation, it should be tried for all of us.
Hope this helps,
Laura
That’s v interesting. I am presently disease free after first line treatment, but was told PARPS only available after 2 recurrences, in other words 3 lots of treatment.
So, do I understand that is now just 2?
If you read below to Claro805,
She says the guidelines have changed even further and we might be able to get PARPS after front line!
If BRCA positive.
Looks promising and you have to lobby your Oncologist about this.
Best wishes,
Laura
Thanks Laura that was very helpful and well explained.
No one at the hospital mentioned the BRCA test which may not have been available in 2013 anyway but when I read about it on Ovacome I asked for it. I was told I had the 'right kind of cancer' so was eligible for the test. I only found out about the Jewish connection when my daughter had the test. It made me wonder what else I didn't know.
Thanks again Laura, Zena xx
Hi Zena,
This is my (limited) understanding....the PARP inhibitors have only recently (2017 & 2018?). been licensed by NICE (government agency). One is suitable for BRCA negative ladies but most seem to be more effective in BRCA positive ladies.
Now the rules are that you may be offered a PARP after 1st recurrence (used to be after 2nd recurrence) & you start it within so many weeks of finishing chemo.
Some hospitals are proactive with offering BRCA testing. Mine wasn’t & Ihad to ask. (I am negative). The drugs I know of are Oliparab, Niriparab & Ruciparab. The all block something in the cancer DNA (I think).
Does this help?
Linda
Thanks Linda, that's great. I know what to expect now if I have a recurrence. Fingers crossed I won't. It'll all depend on my luck I guess.
Hope you are doing well, Zena xx
Hi Linda which are the one that are affective on BRCA neg
I don’t know Bev, sorry
HI-
HERE IN U.S. THEY ARE STARTING BRCA-POS PATIENTS ON LYNPARZA RIGHT AFTER CHEMO. WITHIN 4-6 WEEKS OF SUCCESSFUL COMPLETION OF CHEMO. THEY DO NOT OFFER IT TO US W/OUT PAYING RIDICULOUS PRICES FOR IT.
HOPE THIS HELPS!
LEE
Thanks Lee, I finished chemo 5 years ago and didn't find out about the BRCA gene until 2 years ago. Luckily, no other member of my family carries it. We are very lucky here in UK that all our medication is free although some is so expensive it's not offered.
Hope you are doing well. x
Hi Zenaj
You have lots of useful information here. BRCA testing was not standard even a few years ago- I had mine because they were running a trial in my region so every one diagnosed with ovarian cancer was tested.
Even so I had to remind my Oncologist to put me forward.
Olaparib was developed for use for those of us with BRCA but they then discovered that it could also be useful for non BRCA. Just shows really the development that has gone on over the last few years!
xx
Hello Zena,
from what I gather a submission was sent to NICE in September last year (details below) which was a request to give Olaparib after first line chemo. I think until NICE do approve this then it is still not given until after second or third recurrence.
nice.org.uk/guidance/indeve...
thanks,
Sticky77
Thanks for that sticky. Looks like we might know by the end of the year. Let's hope they agree it. With all the cut backs it might be too expensive. Zena x
I did email AstraZeneca as I was told that currently the NHS funds the first 15 months and then the drug company takes over payment indefinitely. AstraZeneca said this was the case currently. I thought that if NICE don't approve it or the NHS withdraws funding (I think in November last year before positive results from Solo trial they were contemplating doing so) then we would beg, steal and borrow the money and pay for it ourselves.
x
The positive results were from the Solo trial which gave ladies Olaparib for 2 years. Im on Solo2 which means I get the Olaparib until disease progression (currently 5 years 1 month on it). Some ladies from the original trial are still disease free .
I can shed a bit of light on this as I’ve been offered Lynparza after frontline chemo but everything changed literally in December to make this possible as previously it was only available on the nhs after 2 recurrences. I’m with the nhs but I have bupa and I could get it through bupa so I was going to switch until a few weeks ago literally my oncologist was very excited that a few days before Christmas they’d learned that it would be available on the nhs after frontline treatment as a maintenance treatment. It’s actually AstraZeneca that are funding it ( clearly doing a deal to get their product in with the nhs) and to meet criteria you have to have the brca gene or your tumour must have brca mutations so it’s worth asking if your tumours been tested even if they are brca negative. You also need to have had a strong response to chemo.
My oncologist was very excited about this move and said it would change the way they treated ovarian cancer from now onwards but I am very lucky as he said you have to be on the drug within 12 weeks of chemo. I was lucky to be tested early for brca and now oncologists will need to be more on the ball to make sure patients are tested early and tumours tested too.
I don’t think they did use to test people routinely for brca as far as I’m aware but because there are now treatment implications it’s become routine. My auntie had breast cancer seven years ago and I wish they’d tested her and then I wouldn’t be in this situation but I guess they are learning all the time and things are getting better!
Thank you so much for this info! I have been begging my Oncologist for Olaparib after I successfully finish Carbo/Caelyx for first recurrence.
I just saw her yesterday for my half time scan results. My CA-125 is down to 29, from 473, and my scan showed no sign of disease anywhere, but a tiny nodule on my peritoneum which had shrunk to 1/8th its original size.
So I still need to finish 3 more rounds of Chemo and then she says I am only eligible for Niraparib.
But I want Olaparib because if it’s better side effects.
She said I could only have it on second recurrence, so I will send a copy of your letter to her with a big question mark.
Thanks again,
Laura
PS: I am BRACA1 positive and platinum sensitive.
Hope it helps! If you google there’s some information online about the decision which as I say happened literally a few days before Christmas. I was pleased because I didn’t really want to switch to bupa and my brother was talking about fund raising but the costs are astronomical! Good luck!
Is there any information about giving Olaparib within 12 weeks of frontline chemo? Also has that definitely been approved? I'm past 12 weeks post frontline but would encourage my oncologist to start asap if its been found to be most effective at that time,
thanks x
I can only tell you what my oncologist told me but I am at st.james in Leeds so a major cancer centre. He said he needed to get me on the drug within 12 weeks which wouldn’t be a problem but there was a lot of admin but I don’t know the reasoning around 12 weeks as I didn’t need or think to ask. I have been told I’m having it for certain funded by AstraZeneca through Nhs basically for as long as it works I was told. Definitely worth contacting your oncologist and asking all the questions!
Thank you! I emailed my oncologist last week as I queried it at my last appt. but couldn't fully remember her response. She's off sick at the moment but I'm hoping as soon as she's back she'll email me. Thanks again, sticky77
I am sorry, but I have checked all the NICE guidelines for 2018 and I can find nothing confirming use of Olaparib for maintenance after first line or even first recurrence.
biopharmadive.com/news/uks-...
pharmaphorum.com/news/nice-...
But if your hospital is offering, take it!
Niraparib will have to do for me,
Best wishes,
Laura
We’ll definitely quote me! Looking at my notes I put that AstraZeneca funded it not the nhs but I am nhs. My oncologist said it was all so new that I’d be the first patient offered this after frontline treatment ( obviously others have but on a trial) from st James hospital. He said it was approved for use for brca patients in December and because ladies with brca mutations in their tumours are also eligible they’ll be routinely checking tumours now too! My next oncologist appointment is week after next so if I find out more I’ll update. I had my last chemo 2 weeks ago with ct scan next week.
Thanks for this info. It's great to know they're improving things all the time. I guess if I get a recurrence I'll have to start chemo again before I will be given the new drug but at least there's something out there now. x
Hi just wondering about what you suggest here: What's the difference between getting gene testing and having tumour tested? (and how do they test the tumour if it was removed and gone, after surgery?)
Hello Lucci
As I have said before on this site, my 2nd opinion professor in London suggested I had my original tumour tested for a somatic mutation (just before the time of my recurrence). He said that only 10% of women have it, but it was worth having it done. He also said at the same appointment that Niraparib and Olaparib were proving very successful for some women, but didn’t say that they were more successful for the women with the BRCA gene or somatic mutation but I think that was why he thought I should have the tumour tested, despite being BRCA negative. Anyway I asked my surgeon who said it was not something they routinely did and did nothing. Luckily my professor wrote to my oncologist recommending it and after months of waiting she told me it had come back positive, and she was really excited about it. So I had the choice of Niraparib or Olaparib and she suggested Olaparib as having easier side effects. I have been on it for almost 3 months now and after initial tiredness I am doing well.
So please ladies who are reading this and are facing a first or second recurrence, or at any time, if you’re BRCA negative I think it is worth getting the testing done. Samples of your original tumour will have been stored after de bulking.
BRCA gene testing is done by blood test and interview and can be organised by your oncologist.
I hope this helps. Sophia x
That is great news, I hope many more women can access these meds, even if brca negative. Yes that's what I wanted to know - about the tumour - how they could get a sample to test if it's all gone after surgery- and so now I know they store it.
Quick side question; what do you all mean by "professor" ? We're in Canada and my mom sees the oncologist and sometimes her gp, and that's all. There is no professor we deal with. What is the system/treatment model over where you are? (UK right?)
Thanks and wishing you well.
Hi Luci
The professor is basically my second opinion. After my first round of chemo when my CA125 was very slowly creeping up again (I had a recurrence after 2 years of it gradually increasing) I did a lot of research and he was the most important professor in the field of Ovarian cancer I could find. He works in a big university hospital in London, heads up trials and also works out of the London Oncology Clinic on a private basis. I am lucky enough to have health insurance and that funds me to go and consult with him every six months or so. He doesn’t actually treat me but makes recommendations. He writes to my oncologist, who knows him and is fine with it. Oncologists here in the UK are generally fine with patients seeking second opinions and their secretaries can email or fax your histology to them. I think it has been worth it for me or I might not have got Olaparib. I do wish you and your mom the best. Xx
I saw a Guardian article from September saying that all cancer patients would be tested genetically although I’ve not been as yet. I will query it again with my oncologist. Macmillan book says low grade serous isnt usually genetic and I’m told our hospital doesn’t do this testing so it be that it is only in the early stages of being rolled out.
Interesting times!
Thanks for opening up this topic
Alex x
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