Anyone been on any trials for PARP inhibitors and have any feedback? I was on Capecitabine but it stopped working after 3 months so am seeing a new oncologist tomorrow about joining a PARP trial. Would be grateful for any info … thanks!
Sorry to hear the capcetabine has stopped working 
There is a phase 2 parp trial across te country that is recruiting brca positive patients. I would definately get yourself on it. I am brca- so cannot access the trial and so am looking at the possibility of accessing one in europe.
All the best
Tina x
Thanks I’ve seen that. Am really interested to hear from anyone who is actually on these trials or has been. I am BRCA1, triple neg so I meet the initial criteria for sure. Just really want to know about how quickly results start to show themselves etc.
Thanks though!
I know american parp phase 3 trials have proved a little disappointing. The results seem a little hit and miss but being triple neg, these drugs offer the best hope we have at the mo. Some people have a few months of success but then see progression, others have no joy, etc. I know Parps tend to work better on genetic bc but have read about lots of brca+ ladies for whom the trial have failed them too. Definately worth a shot though.
Have a look at the TNBC fundation site in the US- loads of parp discussion in the forums
Tina x
I was on PARP for 6 months last year. It held me stable for this time, and we also had a small amount of reduction. However, once progression starts, treatment is immediately stopped, and the patient returned to conventional treatment. It was very time consuming-daily infusions every 3 weeks, with 2 mid cycle check ups, so you really have to be prepared to put the hours in. You really need to enrol in a centre close to home (more than an hour would be probably too taxing, I think). Side effects were minimal, the staff fantastic, and it was good to participate.
It’s designed for BRCA1+2, and ovarian, and some prostate cancers. There is a misconception that it is used for trople neg-not so in the UK, only in the U.S.A., so I hope you meet the criteria, and are close to an enrolling centre. If you have any other specific questions with which I could help, shout out!
Hi, thanks for the feedback. Turns out I am eligible and we start in 2 weeks. Sounds like loooooooads of time but luckily my hospital is 10 mins from where I work so should be relatively easy to get to. What drugs did you switch to? My oncologist seems to think it will be gemcarbo next?
Hi,
I am brca1 and waiting for christie to start me on PARP.There seems to be some waiting for these drugs. I wonder how long did you have to wait for these? Thanks in advance
Hi - I was told about PARPs and have investigated to be told that one consultant I saw didn’t have a nurse to deliver the meds. I’m now investigating whether it’s available in Leeds. However I think they will only take you on when you’ve had some chemo at the secondary stage.
Because of the delay I have started on carboplatin 6 cycles, yesterday. Am very encouraged at how I feel today, SO different from after epirubicin and FEC 9 yrs ago.
I have a tumour in the media sternum area, next to aorta. I was tested over the winter and turns out I am BRAC2 positive. Otherwise weakly ER+ (we have exhausted that line with 3 yrs Femara (letrozole), and HER-
Initially I was very disappointed about not getting onto a PARP trial but it seems it isn’t quite the mecca that they at first hoped.
Hi letty
best of luck with the carboplatin. I have my 4the infusion next week + a ct scan last wk has shown an excellent response 
I have mets to chest wall + superclav nodes. Target nodes have already shrunk by around 70% so I’m delighted! It’s an easy chemo I agree by comparison to fec + tax. My hair is unchanged + I’ve only had mild fatigue + tummy probs. I’ve had worse s.e.'s from the steroids so I’ve been reducing my dose with each cycle.
I paid for brca testing as I didn’t qualfy on nhs despite being triple neg + only 32 at dx. I’m brca negative + so can’t access parp trials and I’m gutted but as you say, results are a bit hit + miss to say the least. You said you are weakly er psitive + I might be wrong but I think the trials are only open to brca positive ladies who are triple negative?? I might be wrong but it might be worth checking out.
All the best with the carbo hope it does the trick- keep us posted
tina x
Letty, I participated in the PARP trial last year, and had 6 months of slight shrinkage and stabilty. If you have any questions, do ask. Incidentally, there is no reason why being slightly er+ would exclude you from participating.There seems to be a very common misbleief that PARPS are used for triple neg cancers. This is simply not true (although in the U.S they do use it for triple negs) Once again, I will reiterate that the tral is open to BRCA1/2, ovarian cancer, with male prostate cancers being the next group to be included in the study.