PARP inhibitor trials

[SueLR]

Hi All,

I've just been to see a doctor in Newcastle about joining a PARP inhibitor trial and thought you might like to know about it, as it was explained to me.

You might already know that PARP inhibitors are new drugs which are showing good results in ladies with OC and the BRCA1 gene mutation.

I had asked my oncologist about them the last time I saw him and although they are not suitable for me now as I am in remission, he referred me for consideration for the trials when the cancer returns.

The doctor said they are in phase 2, so they have had trials for dosage levels and are now being given to women and monitored for effectiveness and side effects, so everyone on the trial gets the drug (rather than earlier stages where you could get a placebo). There are various points at which spaces come up, so if my cancer recurs at one of these points, I may be able to join the trial. It is daily tablets and so far has shown good results with few side effects. These can be fatigue and mild nausea. He was a bit vague on monitoring, but it seemed to be visits every 2 or 3 weeks and regular CT scans.

What threw me, though, was that it is a replacement for chemo. Who wouldn't want a drug as effective as chemo with hardly any side effects, but I'm not really sure I would be prepared to trust this over a tried and tested effective if very unpleasant treatment. Unlike chemo though, you can go on taking it rather than in pulses.

I also had an interesting chat with one of the trials nurses, who said that new treatments do come up, and if they know someone is interested, they can bear them in mind should there be something suitable. They did seem keen to recruit though; the doctor said that there aren't that many women with BRAC1 and OC, although we may feel differently!

I said if there is ever a dream drug which prolongs remission without any side effects- I'll be there.

So I don't know what I'll do when the time comes. Obviously the choice isn't totally within my control as it is a huge timing issue: my disease coinciding with trial spaces. although they did say it can still be taken after second line chemo. I'll think I'll just bury my head for now and decide that this remission is going to last ages and I won't need to think about it!

I just thought I would share the info as I know we have occasionally discussed both getting on trials and PARP inhibitors. Hope it helps.

Warmest wishes

Sue

x

PS one of the things that really gives me hope though, is that these new treatments are so close, and perhaps they won't be able to help us, now, but I think women in the future will have more choice and better options.

[Hidden]

Hi Sue,

I don't think I carry the gene but thank you for the information very encouraging love x G x

[iamstillme]

Hi Sue , i sincerely hope that it is a very long time before you need it , Change the word when it comes back to IF . Hope for an extremely long remission and who knows what will be around then . Thank you for the information it is interesting . I believe as well that it is also available in some instances for high grade serous as well

Love

Ally

[nandi]

Hi Sue,

I have just started a PARP inhibitor trial. It is phase 1 but everyone gets the trial drug. It is combined with carboplatin. I will be having carboplatin and then daily PARP pills for 14 days, one week off and then repeat. I was determined to get onto a PARP trial (I am BRCA2+) but my disease returns as widespread but nothing big enough which is 1.1cm min, for the phase 2 trials PARP only is what I wanted. I had been symtomatic for 3 months whilst trying for trials and when this was offered I jumped at it. Too soon for any results yet.

I think you are wise to look into trials, but like the others I hope that you will be clear for ever or at least a very long time.

Good luck x

[Jeanp]

Hi Sue,

I too went to Newcastle (Sir Bobby Robson unit). I was accepted on the Parp Inhibitor Phase 1 trial. I had a week of the Parp Inhibitor every 3 weeks. Unfortunately after 4 months they stopped it because my tumors were still growing although very slow and there were no new tumors. Fatigue and hair thinning were my side effects. I had to travel every week from Belfast which tired me out. You were saying that in Phase 1 you can be given placebos .I was never aware of that. I still have faith that the Parp Inhibitors can work. If my symptoms stay at bay for another few months im hoping to get on another Parp trial here in Belfast.

The unit in Newcastle is staffed by amazing people who do everything to help you.

Best wishes

Jean

xx

[SueLR in reply to Jeanp]

Hi Jean,

I think I got a bit carried away. I don't actually know the ins and outs of stages of trials, and wrote as I understood it, but because the doc said everyone got the drug, I think I may have inferred wrongly that people didn't on other trials, and I'm sure you would have been told something as important as that.

I really hope I didn't upset you, although you obviously got the drug as you had the side effects.

I do hope you're ok and you can find something more convenient. To think I was moaning about driving the 40 miles or so to Newcastle!

Warmest wishes

Sue

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