My Ovacome
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Gene testing

I have just been tumour tested. The results as follows. There has been no fault or mutations within the BRAC 1 or 2 genes nor in the 13 gene panel looking at a pathway known as homologous recombination. This means I am less likely potentially to benefit from part inhibitors for maintenance.

Could anybody advise does this mean the only options I have is chemo until I become chemo resistant. Just completed carbo/doxil for 1st recurrence and managed to stabilise disease high grade serous 3c.

Feel a bit scared options could be running out. Any comments would be appreciated.

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Hiya... I don’t know the answer to your question...possibly someone will do but it might be best to ask the Ovacome helpline on Monday.

It is particularly hard I find when you have a worry in your mind and there’s no one to ask over the weekend! Hope you have a lovely Sunday and come to it fresh on Monday xx

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Hi Lyndy Thank you for replying. Yes you are right the letter only came this morning and has got me chewed. I should be on a high

as the chemo has stabilised me. It’s just a constant emotional rollercoaster

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Thank you so much for your reply i feel so much better having slept on it. I am just going to enjoy Mother’s Day and speak to my Oncologist at my next appointment. Wishing you well

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Hi

I am stage 4 high grade serous and do not have the BRACA mutation . Can understand your concerns as when I got my results I felt that it may mean there are less effective treatments for me down the line but I was relieved for my daughter .

At the Ovacome day there was lots of information on trials with parb inhibitors and immunotherapy combinations available for those without the BRACA gene as well as with so I felt reassured that there are other options .

Rucaparib is a parb found to have some success in BRACA and non BRACA and is currently being considered for approval in U.K. and has been approved in America since 2016.

Would definitely be worth you having a chat to the helpline on Monday and listening to the Ovacome day talks when they post the videos .

Stay hopeful there are still lots of options to keep us going and kick this devastating disease back into touch.

Glad your disease is now stable again and wishing you a long remission .

Love and best wishes Kim x💜

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Hi Miowery, I am sorry you have been left upset. I feel they should of seen you in person so you could ask questions about the results not just send it through the door. I would be upset too because it has left you with more questions & no answers. The reason you have gone a head with this testing is because you want to know & understand what it means. not want to be left more confused.

I hope someone can give you the answers soon try not to allow the results to effect you too much. You would be surprise how many treatment are out there.

I am on Niraparib which is a inhibitor the reason I have been offered it is because I have had 2 recurrences & I am still platinum sensitive. I am also BRAC 1/2 negative but I have still been offered it.

So you still might be offered something like this because some ladies on are BRAC negative but their tumour is BRAC. What that means I really don't know so there could still be some hope. Please keep us up dated thanks take care thinking of you Cindyxx

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The answer is no. Chemo is not your only option. Dependent on you being platinum sensitive or not, you would probably be eligible for Niraparib, which works across cohorts of BRCA and non-BRCA and achieves good success for around 70% of OC ladies.

There are also combinations of immunotherapy emerging which might exist for you. (if you look at the Hallwang Clinic Germany- Facebook page for example, they give examples of treatments involving immunotherapy. An example is a recent high-profile case which Kate Winslet supported.

Do not lose faith as there options. I would discuss your worries with your oncologist again or you could seek a second opinion which proves invaluable to me, as I was told that more chemo was my only option last year. I went to the LOC in London for a consultation. Worth their weight in gold if you are not getting the answers you need?

Good luck and love

Nicky x

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The answer is no. Chemo is not your only option. Dependent on you being platinum sensitive or not, you would probably be eligible for Niraparib, which works across cohorts of BRCA and non-BRCA and achieves good success for around 70% of OC ladies.

There are also combinations of immunotherapy emerging which might exist for you. (if you look at the Hallwang Clinic Germany- Facebook page for example, they give examples of treatments involving immunotherapy. An example is a recent high-profile case which Kate Winslet supported.

Do not lose faith as there options. I would discuss your worries with your oncologist again or you could seek a second opinion which proves invaluable to me, as I was told that more chemo was my only option last year. I went to the LOC in London for a consultation. Worth their weight in gold if you are not getting the answers you need?

Good luck and love

Nicky x

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If your tumour is hormone sensitive, hormone therapy may be an option. There are several different tablets available - I'm currently taking Exemestane. There are also monthly injections which are sometimes given. Di

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Hi

How would you find out if your tumour was sensitive?

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Ask your oncologist. It will likely have been tested Sx

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When I had a recurrence I chose to have more surgery following the results of the Desktop 3 trial at Queen Charlotte's Hammersmith in West London so this may be an option for you.

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I know my oncologist would say there are lots of other options.

You've only had two lines of chemo. I think it would be unlikely you'd get onto Niraparib- if memory serves it was 4 or more for the patient access scheme.

What is becoming ever more apparent is not only are there loads of variations within OC, the same is true of our response to treatments.

Those clever people doing the research and the clinical trials are getting a much better grip on which groups are likely to benefit from them, and this seems to be leading to at least some benefit for most of us, if not all to the same degree ( But we're individuals, not statistics!).

Chin up! x

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