Hi All
Im looking for any info on PARP inhibitiors as a treatment for tnbc. I was dx in jan and had a mx and chemo but Ive had a recurrence (skin mets) immediately after completing chemo (Fec-tax). Ive just had a massive op to remove the affected skin and I’ll be having rads and probably more chemo- will know more when I have my follow up appt on Weds.
Just wondering if any of you have tried PARPs and how effective they were? They seem quite widely used in the US and results have been very good but things seem to be in the very early trial stages here…
Any info would be great.
Thanks
Tina x
PARP at present is at stage 2 clinical trial in this country. However, it is not being used here for TN-the entry criteria stipulates BRCA1/2 or ovarian cancers, with the patient only having used 2 chemo types to date. I was on this trial with some success for 6 months.
Thanks for the info elaine. Can I ask where you did the trial? Im in liverpool and I imagine all the trials are around London? Ive had 2 types of chemo so far so would meet that criteria but my genetic results are not back yet and I would imagine it’ll be early next year before I hear anything. I will ask my team on wednesday.
Thanks, Tina x
I’m in Exeter, so was able to be treated at Plymouth. The closest to you would likely be Newcastle. Do take care when reading up on this-it’s easy to become confused between what has happened/is happening in America, and what is hapening here. In the U.S they are targetting TN and use it in conjunction with chemo-here it is used in isolation for genetic cancers.
Gingerbud I am having my final chemo on Wed and am scared stiff, when I thought I would be over the moon to be finished.
I hope your op went ok, and your comfortable?
Emma xxx
Thanks elaine I will look into having the genetic tests done privately to speed things up- it may help me access the trials more easily.
Hi emma sorry to hear u so anxious about finishing chemo- I was exactly the same. Try not to let my bad experience worry you too much (easier said than done I know!). It sounds like you’ve took the same approach as me Reading loads of horror stories online 
The thing to remember is that most of the healthy tnbc’ers who have fully recovered are too busy enjoying their lives to be on the forums so we get a biased view- hearing only of recurrences and other bad outcomes. My tumour was larger (39mm) + one node was positive so hold onto the fact that your nodes were clear. My op went well thanks- I’m in minimal pain + feeling remarkably calm about things. I’m at clinic tomorrow so will know more about my treatment plan then. Looks like rads + more chemo
good luck with your last chemo
tina xx
Thanks for writing back to me Tina. I feel so guilty moaning on here but you lot are the only people who understand!
I’m pleased you’re not in too much pain and staying calm. Good lucky with everything, I’m always looking checking in on here, like you say I’ve looked up way too much on TNBC so I try just to stay on this site now!
Emma xx
Hi girls- just to keep you peckers up. I was treated for tn bc Xmas 2003. It was a 2.4cm tumour with one pos node and so much vascular invasion I wasn’t expected to make it through chemo without a reccurence!!!..but I did and I’m still here and still ned nearly 7 years later.
Josie xx
Thanks for that josie 
Im just praying this is a blip + I go onto make a full recovery like you. My tumour had no vascular invasion at all- just shows you how it’s impossible to predict the outcome in spite of histology results.
Long may NED continue for you
emma good luck for tomorrow Hun
tina xx
Wow Josie they are the kind of stories we need to hear, thanks so much! That’s fab!
I’ve just thought that’s nearly 7 years clear, by then my daughter will be 12, son 17! that’s cheered my up lots!
Thanks Tina, I have everything crossed for yours being a blip too xxx
Thankfully triple neg tumours respond particulary well to chemo! Good luck to you girls…there are lots of us doing very well out here.
Josie x
Thanks Josie xxx
Good luck today at the clinic Tina xxx
Hi
If it helps at all I can add my own story, I was also having chemo over xmas 2003 for triple neg bc (3/3) and whilst my life will never be the same again on the surface things are OK. My dream came true & in the main I now stress over work & hair!! (unless I am due a check up of course!) and recently I have felt strong enough to try and loose some of the weight I gained during treatment (and comfort eating!).
I often wonder how helpful it is to hear about someone further on in this journey, does it grate? or is it beneficial? I suspect it will all depend
I imagine the treatments improve year on year and long may it continue.
Best wishes to all
Caz
Caz i find it really helpful and doesnt grate with me at all… i know everybody is different and i know that all our diagnosis and treatments varied too but i still find it useful to hear peoples stories who have been through the same thing.
Lx
Caz stories like your are so beneficial & I really appreciate you writing! Emma xxx