Icon9 : Hello,this is my first post although I... - My Ovacome

My Ovacome

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volleyp profile image
17 Replies

Hello,this is my first post although I often refer to everyone’s chat for information which I find very helpful. My ovarian cancer has returned after 4 months and I maybe eligible for icon9 trial . I wondered how people for the drugs? Olaparib and cediranid thanks

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volleyp
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17 Replies
Katmal-UK profile image
Katmal-UK

Hi are you BRAC positive? I trialled bith seperately, Cedranib for just over a year and then after a second recurrence Olaparib which I am still on 8 yrs 4 months.

volleyp profile image
volleyp in reply toKatmal-UK

No I am not, that sounds good.

RoseMS profile image
RoseMS in reply toKatmal-UK

Wow Katmal, thats amazing. Are you BRCA positive and also on the full dose of 600mg Olaparib? Is there any long term affects of the PARP? I am coming off after 2 years as per regulations after frontline but scared to do so. Would happily remain on it if I could. Well done. I am BRCA2 somatic.

Katmal-UK profile image
Katmal-UK in reply toRoseMS

Hi, yes I’m BRAC2 and so far no long term side effects. I have been on 600mg since I started on the SOLO2 trial. I understand your nervousness but My Onc says he’s aware of ladies who were on the original SOLO1 trial and they are still going strong many years later x

Carpediem68 profile image
Carpediem68 in reply toKatmal-UK

Hi Katmal. Do you mind if I ask; do you mean you have been free of disease for 8 yrs 'after' your second recurrence - or 8 years since diagnosis? That's amazing! So happy for you!

Katmal-UK profile image
Katmal-UK in reply toCarpediem68

Hi. I was diagnosed in 2007. I have been disease free again (2 recurrences) since end August 2013.

Carpediem68 profile image
Carpediem68 in reply toKatmal-UK

Thank you for your reply Gosh, that's amazing! Did Cedranib work do you think or is Olaparib the main drug that you think has worked for you? I'm BRCA1 and have just finished frontline chemo, about to start Olaparib and Avastin. I'm keeping my fingers and toes crossed it works for me. Best wishes that your treatment continues to be a success!

Katmal-UK profile image
Katmal-UK in reply toCarpediem68

Hi, I trialled Avastin in 2007/8 and received a remission of near 4.5 years. I then had a recurrence and following chemo trialled Cedranib. I reoccurred after about a year. To be honest I think my recurrences were more stress related. My first recurrence was a month after my father was given a terminal cancer diagnosis and then the second a month after he died. Both Avastin and especially Olaparib have worked well for me, particularly the latter. Good luck to you!

Carpediem68 profile image
Carpediem68 in reply toKatmal-UK

Hi Katmal

Interesting to hear what you say about stress. I'm sure that is a factor. I hope your life is much less stressful now and that you cotinue to stay NED. Great that the drugs have worked for you. It gives me hope. x Best wishes!

Ruebacelle profile image
Ruebacelle in reply toKatmal-UK

are you BRAC? great results

Katmal-UK profile image
Katmal-UK in reply toRuebacelle

Yes, BRAC2

RomanZ profile image
RomanZ

Hi, I remember researching this combination when my mum had her first recurrence. The phase 1 trials were very effective for women with the BRCA mutation, and the trial was then extended to women without the mutation. A recent phase 3 trial showed the combination was effective for both BRCA and non-BRCA women. They are continuing to investigate the synergy between the two drugs and it's now being considered a good alternative to standard platinum based therapy. Here is a link to the post I found (the post contains statistics). My mum was on Avastin/Olaparib (very similar combination) and for her that was a much easier to tolerate than chemotherapy.

I hope you're able to get into the trial and it works well for you.

targetedonc.com/view/respon...

volleyp profile image
volleyp in reply toRomanZ

Thank you that is really helpful. Sadly I am not sure I will qualify as cancer returned in 4 months having read criteria closely… totally clear scan in Jan post chemo now back 🙈

RomanZ profile image
RomanZ in reply tovolleyp

Mums oncologist put her on avastin/Olaparib without a trial. You can ask your oncologist if this is an option (we're in Australia).

thejoannabell profile image
thejoannabell

I’m BRCA negative and recurred after 5 months. Did 6 cycles of gemzar and Avastin, and now am on zejula and avastin which seems to be shrinking a tiny remaining nodule. There are options even if you don’t qualify for the trial. Wishing you the best!

volleyp profile image
volleyp in reply tothejoannabell

Thank you that is so useful to know x I will ask my consultant about this option. More info the better!!

Ruebacelle profile image
Ruebacelle

you might check out phase III results on the web. good luck

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