Hi, has anyone been on a phase 1 trial?....my wife will be starting one soon, not sure exactly what it will be yet, but given that it is in many respects a last throw of the dice (after 3 chemo regimes), i guess i, we, are hoping that some of you, well loads of you actually, will have been on one and tell us that it helped.
Any feedback would be appreciated. Thanks.
Yes I have been on a Phase 1 parp inhibitor trial for 6 months with excellent results and barely any side effects. Happy to answer any questions that you have.
Thanks for the reply and yes we would be interested to know what trial you are on. As for parp inhibitors, we know thta Olaparib has had a pretty good response to Serous OC in trials, which my wife has, but i doubt we will have any say in what she gets to go on.
We have mixed feelings, on the one hand of course a trial drug could be the next 'wonder drug',.....then on the other hand we think that perhaps an established chemo like topotecan may be the best way forward. Problem is that she has had so much chemo over the past 18 or so months, without any real success, by that i mean CA125 never getting into double figures and never more than 4/5 months without having to see the Onc again cos of recurrence.
So if you can let us know what trial you are on and if possible anything your Onc said was the reason they put you on that particular trial.
Finally, may the good news continue for you.
If you want to ring the helpline on 08453710554 (Mon to Fri 10 - 5). Someone there will give you the answers you need. I know that generally, it's good to be on a trial. Sorry I don't have any direct experience, but wish your wife success with her treatment.
Love Wendy xx
Thanks, will do.
Hello Husband
I am on a phase 2 trial which has been very successful. I don't know how this would differ from a phase 1 trial. The side effects are, to a certain extent, not as well recognised BUT the clinicians are very attentive because they are keen to find out the effects of any new drug. I am sure they would be happy to give you as much detail as you want to know. I suppose one important question is ' what has happened to other trialists?'. Unless your wife really is the first of the first.
They keep a very close eye on me. I am scanned every 6 weeks and seen every 3 weeks so I feel well looked after.
The Topetecan will always be there if you need it but the trial may not.
Good luck to you and your wife.
Sarah
You might be interested in reading Chasing Medical Miracles: The Promises and Perils of Clinical Trials by Alex O'Meara. I read it this past summer and found it quite sobering reading, as it makes it very clear that the provision of medical care to individuals is not the primary aim of any clinical trial, something that is very easy for us to forget when we are desperate to find a treatment that works. It includes an appendix containing suggestions on questions to ask if you are considering taking part in a clinical trial.
I wish you and your wife all the best in your decisions about her future treatment, and hope that you find something that works for her!
Barbara
The trial I am on is BioMarin BMN673. I chose to go on the trial instead of chemotherapy. My oncologist offered me Gemcitabine/Carboplatin as treatment but I decided to ask for a referral to the Royal Marsden to enquire about parp inhibitors. I had been following the progress of parp inhibitor research and wanted to give it a go. I always had the backup of going on to chemo if the trial didn't work.
I am BRCA 1 positive (genetic mutation responsible for my cancer). I have had an excellent response on the new drug with all tumours shrinking by over 90% and I have had barely any side effects (just slight queasiness for the first few weeks).My CA125 has gone from 204 down to 9. I have no loss of energy and am working, exercising etc whilst on the drug.
I will just say though the trial has not been successful for every patient that has been on it.
I have been extremely well looked after with regular monitoring (blood tests, urine tests and scans) .
My particular parp inhibitor trial is a stage 1 (first in human) trial but there are other parp inhibitor trials that are at different stages.
Good luck with whatever treatment you decide on. If you have any questions please ask.
Best wishes
Sharon
Thanks for this....strangely the last chemo my wife had was gem/carbo and she had 8 sessions of that, rather than the normal 6. We had good results in sofar as it reduced tumours and her CA125 got to its lowest level (107) but 2 months after she finished the growth started again. But in the 6 months she had it she tolerated it very well and it done its job to an extent.
Like you we will be having a phase 1 trial and we are hoping that it will be a parp inhibitor, because we have also read good things about them, well for some anyway,.
I know the Olaparib is now phase 2 and very much helps Serous high grade OC, which my wife has. We have no idea if she is BRCA or not, but with all the tests she has had i am guessing if she was they would have said so.
Sharon, thanks so much for the feedback and hope the results continue on the positive path.
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