Ribociclib versus PARP inhibitors

Hi, so sorry you find yourself here. First of all, I'm brca2 but I've only been through primary treatment, in 2013 for triple negative.

However, I have amassed a huge amount of info relevant to triple neg secondaries in brca. So if that applies to you I can post the links. 

Sorry I'm not sure about availability of PARP. It has been trialled in brca secondaries, I'm not sure if it depends on the site though. I'm happy to post the links to what I have if it might help.

I did lots of asking around online UK brca groups for recommendations and info to get seen in the hospital of my choice (there were variances in protocols). So if you can find out which hospitals are using PARP ask for a referral. I chose one with a higher prevalence of brca in the area, hoping they would therefore be up to date on treatments. I stuck with the gynae in my own health board area because he is active in genetic cancer networks and talked me through everything thoroughly. I am lucky to have a GP who is willing to listen and refer. I found Breast Cancer Care helpline excellent on specific questions and breadth of knowledge so try them.

Hope this helps a bit xx

Hi Annie

Thank you so much for your reply, I am sorry you too have the BRCA2 genetic mutation and have experienced primary cancer.  I was starting to feel very isolated, even on this forum.

My primary and secondary cancer were/are ER+ so not quite the same however I do appreciate you taking the time to send me a message.

I've got a CT scan booked this month which is causing me so much anxiety and fear, mainly due to new symptoms of back pain. It's because of this that I started to look for possible alternatives to Ribociclib should it turn out that I have progression.  I'll keep in mind your suggestions and continue to do 'my homework'.

Best wishes

Penny X

Hi Annie

Thank you so much for your reply, I am sorry you too have the BRCA2 genetic mutation and have experienced primary cancer.

My primary and secondary cancer were/are ER+ so not quite the same however I do appreciate you taking the time to send me a message. 

I've got a CT scan booked this month which is causing me so much anxiety and fear, mainly due to new symptoms of back pain. It's because of this that I started to look for possible alternatives to Ribociclib should it turn out that I have progression.  I'll keep in mind your suggestions and continue to do 'my homework'.

Best wishes

Penny X

Hi Penny,

So sorry you are going through this.

Most of the info I have relates to TN. These article covers ER+ too, but from my reading it does not seem

to be showing much benefit for ER+. However, its from last year and 2017, and early stage of trials, so worth asking if there's

any trials going on in UK. I do seem to remember that there were more trials for brca+ stage 4 than non-brca, so we are being studied

with great interest! I read about the EMBRACA studies on the FORCE website - although American, many of these

trials are world-wide so worth signing up for their e mail alerts.

https://jamanetwork.com/journals/jama/article-abstract/2649183?utm_source=FBPAGE&utm_medium=social_jn&utm_term=1034310871&utm_content=content_en

https://www.oncnursingnews.com/web-exclusives/parp-inhibitors-usher-in-a-new-era-for-brca-breast-cancer-treatment

Analysing the cancer dna is being studied in UK:

https://breastcancernow.org/news-and-blogs/news/new-liquid-biopsy-could-help-identify-advanced-breast-cancer-patients?utm_source=twittero&utm_medium=s

Another investigating blocking spread to bone

https://www.sheffield.ac.uk/news/nr/investigating-how-to-stop-breast-cancer-spreading-to-the-bone-1.704955?utm_content=buf

More on olaparib

https://www.pennmedicine.org/news/news-releases/2017/june/new-treatment-options-for-patients-with-advanced-brca-related-breast-cancer

Paper on statins suggesting they may be beneficial in ER+

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4167822/

I hope there might be something of use to you in all these, and I've not just send a lot of irrelevant stuff. I just know when I was going through treatment it felt like I was 'doing something' investigating the science and asking questions, and I could be more accepting of what the cancer was up to. Certainly now I live much more in the moment and manage to worry less about uncertainties. I hope you can find ways through this that work for you xxx

Dear Annie, 

Thank you so much for your reply. I'm sorry I haven't responded before now. I did follow some of the links you kindly sent to me. However I found myself at such a low point, probably the worst I have experienced so far, but I have managed to dig myself out of it in the last couple of weeks, and I have self referred for Cancer Care Counselling. 

I had a CT scan this week, so awaiting those results.  

I plan to do some more reading once I get over my current scanxiety.

I hope all is well with you, and thanks again for taking the time to pass on all of that information. 

Best Wishes

Penny