Just thought I would share this piece of information...
I went to a very interesting and informative BRCA carriers meeting in London on Monday. One of the presentations was about parp inhibitors and was given by Dr Rebecca Kristeleit, Senior Lecturer in Experimental Medicine and Consultant Medical Oncologist, UCL/UCLH. Included in the information presented about parp inhibitors was that 50% of high grade ovarian cancer could be BRCA-like (even if the patient tested negative for the BRCA 1 and 2 gene mutations)
Also at the meeting I met Ruth Payne from My Ovacome in person. It was a pleasure to finally meet you.
Could I ask you what they said about parp inhibitors? I'm really interested because I have the BRCA 1 gene and the results so far seem encouraging.
I asked my oncologist about joining a trial, but he said the trails are for people at a later stage in the disease to me. (I'm just in remission following my first 6 chemos and debulking)
Warmest wishes
Sue
x
Hi Sue
I am on a parp inhibitor trial (now on my 7th week of treatment) for my second recurrence of ovarian cancer. I am BRCA 1 positive. I asked for a referral to the Royal Marsden to find out more about parp inhibitors (as I have been following their progess over the last few years and was keen to try parp inhibitor rather than have more chemotherapy). After 4 weeks on the trial I had mri and ct scans and all my tumours had shrunk by at least 30 per cent so I am delighted with the progress so far.
Having looked into it further, I don't think I would be considered, but I would be really interested in what it is like to be on a trial, and any side effects, although it sounds like you would probably say it's worth it.
Thanks for being willing to share your experience, and best wishes for the future.
hi sharon. i have just joined this site, i have oc grde 3c.. i am also have the braca gene... the cancer came back six months lata, i had carbo taxol again and my ca came down to 8... i am looking into trials.. thhe 6mp and the rucarib... sorry for being cheeky and thick.. but what trial are u on and why did u choose to go on a parp instead of waiting to see when and if u became resistant to chemo? what made u go to the royal marsden? sorry i am just trying to learn more abt this disease as i think i have tried to bury my head and thank u for ur time x
all the best shenx
Hi Shen
You are not beng cheeky or thick. Am happy to answer any questions. Choosing to go on a trial rather than having more chemo was a personal decision for me. I had Carboplatin chemo after my first diagnosis and carboplatin/taxol then carboplatin/caelyx on my first recurrence. I had severe side effects with taxol after two sessions so had to change to Caelyx. Following surgery and chemo I had about 10 months of remission each time before cancer came back and that was with first, second and third line chemos for me. I hated the thought of going back on more chemo that may or may not have worked. I am like a hermit when I am on chemo because my bloods get low and I am scared of infections. I can't work or swim etc. and stay at home most of the time.
I had read a lot about parp inhibitors and how they seemed to be particularly suitable for BRCA-type cancer. Parp inhibitors work by preventing cancer cells from repairing certain types of damage to their DNA. Most healthy cells have other ways of repairing DNA damage so they aren’t affected by the drugs, but cancer cells with faulty BRCA1 or BRCA2 can’t carry out these repairs. The combined effect of knocking out both DNA repair mechanisms is so severe that the cancer cells die.
Parp inhibitors however are still in the trial stages. They are not licensed for general use.They do not work for everyone and they are still testing for side effects etc.
I was offered more chemo (carboplatin and Gemcitabine) by my local oncologist but I asked to be referred to the Royal Marsden for a second opinion because I wanted to find out more about parp inhibitors. I had to then wait for three months to get a slot on the trial.
I have now been on the parp inhibitor drug for three months and am very happy. I have no nasty side effects like normal chemo. I can work, exercise, swim and generally live my life as normal. I just take it in tablet form every day. I do have to attend the hospital a lot for monitoring but that is fine with me, The best news is my cancer has shrunk by 78% since being on the trial and my CA125 cancer marker has gone from 204 down to 10.
I reasoned that if I started this trial and it didn't work I could come off it and start chemotherapy. I also thought even if it didn't work for me that I was being involved in research that might help in the future (I have two BRCA positive daughters). Fortunately it is working at the moment and I am so pleased and grateful to be on this new drug.
hi thank u... so ...so.... so much for ur time to reply to me... u are so knowledgeable.... somehow talking to peple like u who are going thru this sort of thing is easier to talk to normally, rather than some medical person, who always make u feel inferior....can i ask u one more question please... ur trial drug what is it... ive looked at Ruccarib (think thats how u spell it) and Oparlarib.... then there is the M6 trial... what is urs... how was ur dr when u asked to go to th royal marsden.. i think after reading ur blogs that is what i want to do... the only thing that i have concerns abt is that once u have been on parps u cannot go back on them and i dont now how long they will work for... my delema is do i go on chemo away... try chemo until it doesnt work then parps... i am so frightened at the moment its so hard to think straight without the awful fear taking ova... who do u see at the royal marsden? have u read abt folate receptors? thank u once again... best wishes to u shen x
Hi Shen
The trial I am on is BMN673. It is a drug made by a company called BioMarin. You can see the details here: clinicaltrials.gov/ct2/show... You can search this database for all trials.
I have been told that although I am on a trial drug it has been licensed for compassionate use. This means I can carry on taking the drug for as long as it still works for me (even after the trial period has finished). The doctors at the Marsden have told me they have patients who started on a parp inhibitor 5 years ago and are still on it. As there are no horrible side effects with my drug I would be happy to take it for the rest of my life.
I know exactly how frightened you feel. I was like that before Christmas, trying to decide what to do for the best,
In my case I thought that even if this new drug gave me remission for a certain time, during that time more research is going on, and they are making great strides at the moment, that IF this stopped working then something else might be on offer.
I was referred to Professor Stan Kaye at the Royal Marsden. My oncologist was perfectly fine about me asking for a referral. I was worried initially about what he would think but decided my life was too important and that as I was less than 100 miles away from one of the best cancer hospitals in the UK I should go there. They have been absolutely marvellous. I am so grateful to all the staff there.
Sorry I don't know much about folate receptors - I will investigate a bit further.
Has your oncologist suggested a parp inhibitor trial or are you investigating them yourself?
If you want to speak to someone in person I am happy to chat to you on the phone. Or happy to carry on answering questions on here - that's no problem.
I hope you still check this. I am in the states and have a friend who is deeply in need of BMN 673- BioMarin says they don't have a compassionate use program in place- can you give me any referrals or help. Watch this video on my friend please.
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High grade ovarian cancer recurrence 
Could it be ovarian cancer?
My visit to UCLH
Anyone here on Biomarin's BMN673 parp inhibitor trial?
