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Seeking Platinum resistant BRCA negative ( in blood ) patients

Not updated in a while, always seems to be new news to take on board.

Anyway, I'm looking for anyone with the above specifics and interested to hear what is their current treatment regime.

Specifically those who recurred within 3 months of successful 1st line treatment, who cannot access current trials.

Thank you in advance xx

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Hello JessicaB

I'm platinum resistant, BRCA neg, in both blood and tumour. NED after carbo/taxol with CA-125 of 35 in Jun 2016. Recurred within three months in paraaortic nodes with a CA-125 of 1290. Six months of Avelumab on Javelin 200 trial, leaving because of progressive disease.

Consented for GEN-702 but ineligible as insufficient measurable disease. Most odd that have to leave one trial because of growth but ineligible for another because not enough disease. Anyway, that trial closed before I did have enough disease. Was tested for the folate receptor for both the MOv18 and FORWARD I, but both tests negative. OCTOPUS platinum resistant trial not an option as I have carcinosarcoma. OVTOVA not an option as I don't have a BRCA mutation. No further treatment until Oct this year, while waiting for another trial. CA-125 slowly rising each month to 611, scan ordered and started weekly Taxol. CA-125 dropped to 53 after six infusions, infusion nine on Tuesday.

Minimal side effects but peripheral neuropathy worsening, but still nowhere near as bad as during carbo/taxol.

Helen

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Helen I'm piggybacking here to say how happy I am to read about your response to the weekly taxol. Fab!!! Hope you have a great Christmas.xxx

Netti

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Thanks Netti. I'm really chuffed about it. Apparently a scan would normally be done after six but because of the great drop in CA-125, it's not going to be done until after nine.

Expensive business this taxol, first time round I dropped my iPhone in the toilet (I'd just been cleaning it so isn't as bad as it sounds) but alas although I was over the moon that it still worked, it wouldn't charge up so it really only worked for a day. Had to buy a new one, which I've now dropped, cracked the screen and it keeps switching itself off. I can use it as a phone, more or less, but it won't stay on long enough to read or write an email. Have to run around tomorrow now to buy a new one.

And, I've broken my glass angel.....I had to use gloves to put the decorations on the tree as the needles felt so sharp and suddenly there is was, in pieces on the floor!

Have a great Christmas too, although I'm sure we'll "speak" before then!

Cheers!

Helen

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So sorry about the phone and the angel but very pleased about the taxol. Wishing you a lovely Christmas?

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Merry Christmas to you also. Are you going to Huntley Street on Tuesday for the start of your trial? My chemo is due to start at twelve so we might say hello. Or are you at Tottenham Court Road?

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Sorry just seen this-I was at 170 Tottenham Court Road-will be there every week for check ups for a month then every 2 weeks. Feeling very odd on the new pills.

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Crikey sounds like a phone should be on Santa's list for you....

Take care xxx

Netti

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Hi Helen,

Thank you for your reply, very detailed. Similar to me, albeit I was offered single Caeylex due to allergic reaction to Paclitaxol. Though I am hoping to re visit that weekly should I need to.

Interesting to hear your neuropathy isn't as bad as with the combined drugs. Sounds promising for you with your decreasing numbers.

Did you have surgery at all? Was your recurrence in a new site? Xx

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Yes, I had surgery after four carbo/taxol (the tumour was too large for surgery at diagnosis) followed by a further two carbo/taxol. The surgery was straightforward, TAH, omentum removal and some scraping of sigmoid colon. Speedy recovery, whereas I remember you had problems.

I recurred In the para-aortic nodes, some of which shrunk, some disappeared, some remained the same during the Avelumab trial. The last scan I had in September mentions some other nodes, one near my collar bone.

All the best!

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Yes I did, often wonder if that's when these new sights were able to take hold whilst chemo was on hold for nearly 3 months!

Trying to accept my pathway is right for me. But good to hear from those that fall into my specific category xx

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You may well be right about the delay, I restarted chemo just under three weeks after op. Reply coming in stages, broken phome

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When I recurred and was offered the trial, I asked what I’d be given if didn’t take up

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I was told probably Topetecan but no one seems to mention that one now. Wonder wjy?

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I am Stage 3C serous, BRCA negative, diagnosed November 2015. First line declared inoperable, 6 carbo/taxol with Avastin added on from the 4th. Had 18 lots of Avastin and stayed stable till July 2017. Second line carbo/gemcitabine failed as declared platinum resistant. Have just started weekly taxol and have had 3. Will be reviewed after 6.

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Thank you for replying. Seems there aren't any of us in this position, though I know we can't judge on number of responses.

It was just really a means of finding out what treatment people were on in the same position as me xxx

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Thanks! I had a second opinion from the prof at the Christie in October which encouraged me there were more doors to open, including possibly palliative surgery. But the taxol was the first step, and possibly self-funding Avastin (I have had my NHS quota). It's really bizarre, because I feel fine but I know I'm on thin ice! I try not to look too far ahead. Contemplating the next year's diary is always a thing for me, wondering what it will contain. All the best x

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I get the whole diary thing!! Second opinions can be so worth it. All the Best xxx

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This is me but I start the Patriot trial drug on Tuesday -please keep fingers crossed for me.

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I will do. Good luck, I've not heard of this trial xx

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I was diagnosed in Feb 2016, three cycles of carboplatin/paclitaxol/avastin, surgery then three more cycles followed by another 13 cycles of avastin only. At the end of that my CA numbers had started to rise so I was started on carboplatin/caelyx every four weeks for 6 cycles Halfway through that I fell and broke my hip so had a slight delay. My CA numbers have started rising again and the final cycle has been cancelled. Had a CT scan last week and seeing the oncologist in January. She is suggesting a return to weekly paclitaxol. I don't have the BRCA mutation so am not a candidate from PARP inhibitors.

Not sure if I fit the requirements in your post.

PS I'm in the UK

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