Anyone here on Biomarin's BMN673 parp inhibitor trial?

Hi all

I have been diagnosed with a second recurrence of my ovarian cancer and have decided to try a parp inhibitor rather than chemo this time round. I am BRCA 1. I am due to start on the BMN673 parp inhibitor trial on 13th March. It is going to be a long seven weeks waiting to start and knowing that the cancer is growing!

Would love to talk to anyone else involved in the trial and am happy to talk to anyone else about my experience with it when I start.

best wishes

Sharon

[sarah1963]

Hi Sharon

No I'm not on it but I wish you lots of luck. I am on a different trial (not a parp inhibitor). Being part of a trial will hopefully not only will it help you but everyone who comes after you. Look forward to hearing how you get on.

Best Wishes

Sarah

[Hidden]

Hi Sharon

I am not on the trial but I am interested to hear about it as have just been told I am BRCA1. I have just finished chemo for first recurrance and am on Icon 6 trial. Seven weeks is a long wait for you, look after yourself and hope you are able to have some "me" time to do your favourite things and try and relax.

Best wishes

Anne

[Hidden in reply to Hidden]

Hi Anne

Thank you for your reply. Is the Icon 6 an ongoing trial? I will try to do some nice things whilst I am waiting...

Will keep you informed how I get on on the parp inhibitor.

Best wishes

Sharon

[Hidden in reply to Hidden]

Hi Sharon

My oncologist recommended the Icon6 trial to me when I was first diagnosed with a recurrence as it had been more than six months since I finished first line chemo and I had no problems with the taxol /carb combination. I just have to take a daily tablet for 18 months. They have finished recruiting for this part of the trial apparently. There is a website called Icon6 which gives more info. However I did not know I was BRCA 1 so not sure if a parp inhibitor would be better for me. I have an appointment with my oncologist in February so will discuss with him then.

Best wishes

Anne

[nandi]

Hi Sharon,

I am not on the BMN673 trial. Just before my 2nd recurrence I had been hoping to start on the AG-014699 PARP trial. Met with the team and we were set for go, however the CT scan showed numerous small areas of disease none of which were the required 1cm minimum. I went back to carbo alone and have just finished, all seems good, I am still very interested in the PARP trials as each course of chemo seems to get harder to tolerate. I have PPC and am BRCA2+ Can you tell us where your trial is taking place?

Wish you all the best of luck and please let us know how you get on.

Dorothy

[Hidden]

Hi Dorothy,

Sorry to hear about your second recurrence but glad that you have been ok with the carboplatin and that all seems good for you. I was offered Carboplatin and Gemcitabine and that is still on the back burner as an alternative if my cancer progresses too quickly whilst I am waiting to start the trial.

My trial is taking place at the Royal Marsden on Sutton, Surrey. Where were you going to do the AG-014699 trial?

Best wishes

Sharon

[Hidden]

Hi Sarah

Thank you for your reply. What trial are you on and how are you doing? I agree with you that even if it doesn't work out for me it might help others in the future.

Best wishes

Sharon

[Sueart]

Hi Sharon,

I recently attended an information day at the Royal Marsden, London, for BRACA 1 carriers and Parp Inhibitor treatment was presented as a future treatment for those of us with genetically defined cancers. I was first diagnosed with OC in 1996 at the age of 46 and have had three recurrences with remission intervals between treatments of approximately 3 years. I am now 61 and I know that I have been very fortunate to enjoy such long remissions.

I was tested positive for BRCA 1 in 2007. Without wanting to sound negative, I am due a further relapse anytime now as my last treatment was four years ago!! I would therefore be very interested to hear how you get on.

From everything I have heard there is great hope for this new treatment and I do wish you the very best of luck and hope that any side effects are minimal.

Best wishes,

Susan

[Hidden in reply to Sueart]

Hi Susan

Thank you for your response and your good wishes. I am now under the Royal Marsden for my treatment.

Glad to hear you have had good remission periods. What chemotherapy treatments did you have? I had about 10 months between my recurrences. Hopefully you will continue to stay well and won't need any further treatment but I will be happy to keep you updated on my progress.

with best wishes

Sharon

[Sueart in reply to Hidden]

Hi Sharon,

Thank you I shall be pleased to hear how you get on.

A brief summary of the chemo I have had -

1996/7 Usual surgery then 6 x carboplatin

2000 Taxol & Carboplatin

2003/4 6 x Epirubicin,Carboplatin & Capecitebine with midway

surgery to remove tumour on bowel.

2007/8 Surgery to remove tumour between liver & kidney

then 6 x Carboplatin & Gemcitabine.

My oncologist assures me he has plenty more treatments up his sleeve!

Best wishes

Susan