Good morning ladies and I hope you are enjoying the fine Bank Holiday weather. With an alarmingly rising CA125 my husband and I went to see my second opinion Professor at the London Oncology Clinic last week - he heads up all the OC trials at UCL and seems to know everything that's going on. He says he has lots of people like me who check in with him from time to time, and then he sends my oncologist a letter with his recommendations. I just wanted to share with you what they are as there seem to be a few ladies in the same rocky boat.
I asked about the Trioc TroVax trial which is being run by his department and has various participating hospitals. As you all know it is for ladies with rising CA125 levels or small amounts of disease on a scan, it is an immunotherapy drug based on the Smallpox vaccine, and he thinks this could be a good one for me. I read on the Cancer Research website that on this second phase everyone gets the drug, so it is not randomised.
Next up he recommends I have my original tumour tested for the BRCA gene. I tested negative for the genetic test but a small percentage of people have a 'somatic mutation' in the tumour itself which qualifies them for Olaparib therapy after second line chemo. I think the testing costs about £400, apparently if you are insured they will generally cover the cost. I think it is only about 10 percent of ladies who have this mutation though.
If my tumour hasn't got the mutation, he suggested another immunotherapy drug called Niparib. I think some ladies are on this and it is currently in the process of being licensed and should be available in around a year but can be obtained now incertain circumstances. It can also be used following second line chemo. He says he has seen really positive results with this drug giving longer periods of remission, which I think is exciting news.
So lots to think about, and my own oncologist has contacted the Trioc trial hospital in Bristol so hopefully I can go and discuss that possibility with them.
I really hope this helps some of you ladies who are in my shoes and feeling a bit despairing at the moment. There is so much out there to give us hope. Just to say we also stopped for coffee and delicious flapjacks on the way into London.
Thinking of you all. Love Sophia x
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Hi Sophia, thank you for posting.I feel you are in good hands with your care team. As for your second opinion it all sounds good. At least you are not being fobbed off. I mentioned having my tumour tested to see if its BRAC positive but my onc said its very rare for this to be the case & they didn't do it on the NHS.
It does give us hope there are other opinions out there. As for the trioc trovax trial great lets hope you can get on to it.
I have been offered Niraparib because I am platinum sensitive & just finishing my 3rd line chemo. Let hope this becomes available to you too. Take care Cindyxx
Thanks for your reply. I'm so pleased you will get Niparib, the Proff said some ladies' tumours were packing their bags on this drug. All the best for it and keep us posted.
they don't test it on NHS not because it's rare but because vast majority of women get OVCA after menopause which means it's is lot less likely to be gene mutation related. The median age at which women are diagnosed is 63.
if there's small chance it is any gene (and not only BRCA ) mutation, it's even smaller chance that women after age of 50 with ovca have gene mutation, either germline or somatic. there's also a brca-like (yes LIKE!!!!) OVCA that I'm sure if going to be ignored at laughed about a lot of doctors who don't see all latest trials first hand.
as olaparib is now approved as maintenance after 2 lines of treatment then anyone can insist on testing, regardless of age. it is only parp so far proven to work better for brca mutations.
other parps work just as well for both, 'mutants' and not so testing again isn't required.
and any trials happening will do their own testing if needed before accepting. although known mutation helps future generations more than us with all available current treatments.
Could you also pm me with the name of the prof. Thanks.
Gwenxx
Hi Sophia
Thanks for sharing - as you say there are lots of options that weren't there in the past to give us more hope.
I am one of the 10% who have a somatic mutation. I'm in Ireland and my oncologist suggested I have testing done with a company in the UK, after my 3rd line of treatment wasn't effective. I'm on Olaparib since June of this year, so far so good - CA125 dropped from 1900 to 1403 after first month, but last week after second month, I was concerned to see that it had risen to 1409. Onc didn't seem concerned, will scan me if CA125 plateaus on this treatment.
Thanks for your reply. I am so pleased you are on Olaparib. The raise in CA125 was only small. I'm keeping my fingers crossed that it keeps working for you. Take care and hope you aren't having any bad side effects.
Thanks Juliet that is very helpful, I will suggest that to my surgeon as I haven't heard from him yet. I find you have to keep pushing for things to move forward. Sophia xx
I found the first month tough, but I'm honestly not sure if the discomfort I was feeling was due to the disease (I wasn't in remission when I started Olaparib) and/ or the medication. I had nausea and a lot of abdominal pain and cramping. The nausea eased up after about three weeks, and the abdominal pains became less also.
I don't really have side effects at the moment apart from fatigue. I think you should be prepared for your body to react to another new drug in your system, but don't be daunted - this drug is doable! I have heard from other ladies who are taking it that they've had to have the dosage reduced as their haemoglobin, platelets and neutrophils were impacted. At my last check 2 weeks ago, all the above were ok, so I'm still on the max dose of 800mg per day - 2 x 16 tablets.
Are you in remission or do you have active disease? I'm always interested to know how other ladies who have the somatic mutation are - there aren't many of us as far as I know!
Hi Sophia, I visited LOC 18 months ago, and will be seeking another second opinion there as my ca125 has now risen to 300 and I have enlarged lymph nodes under my left arm and right supraclavicular. I am only being offered conventional treatment here in Scotland. Please could you message me with the name of the consultant you saw? Many thanks and good luck with your own treatment. Jane xx
This is encouraging well done and thank you for sharing
Nicky, interested to hear who you saw at LOC and how you feel you got on. I'm def at a crossroads here & feel choices/decisions need to be made maybe even change Oncologists...
We are no longer allowed to put names on here so will email you his name. He is a superb co tact and heads up slot of the trials so knows all the latest news, more than most of the oncologists xx
Thank you Sophia. This is all really useful information.
I desperately wanted to do the Trioc trial too, but my liver wasn't up to it. My enzymes are now normalising, and although I still feel well, I do feel a bit more symptomatic than before, so I think that ship has sailed for me 😕
I will be getting my tumour tested as I was BRCA negative through blood tests, but it's got to be worth a shot. My new onc also talked about Niraparib and in non-BRCA women it has the most profound results if their tumours have some other kind of variation, but I can't remember what it was called. She's going to see about getting mine tested for that too.
I am so glad your meeting was productive. Would you mind sending me a private message with the consultant 's name that you saw?
I'm so sorry you didn't manage to get on the Trioc trial, and I'm not at all sure they will take me on, just trying to keep every avenue open.
How interesting about what your onc said regarding Niparib, the Proff didn't tell me about any other genetic variation. I think it is a good idea to get your tumour tested and I'm hoping your insurer will foot the cost for you.
I'm wishing you all the very best for your treatment going forward, which I guess will be Carbo/Caelyx, or maybe Gem/Caelyx, and hopefully you will get either the Olaparib or Niparib to follow on from that. I will most probably be following in your footsteps at some point.
It must be so tough on you going through this with a young family, my twins are 23 now so pretty much grown up.
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