Pancreatic cancer BRCA2 and Lynparza

Hello Regis

Thanks for sharing your story.

I'm sorry you haven't had a response. The forum is quite quiet just now. I cannot recall anyone here recently with BRCA 2 mutation. Have you tried posting on the forum of Pancreatic Cancer UK? You might get a response there.

It is great that Folfirinox worked so well and I hope that continues with Lynparza.

Squeaky

Thank you for replying Squeaky.

Not a fan of PCUK.   Consultant who misdiagnosed the pc does training under their banner for ....symptoms of PC! 

I aim to raise awareness of the importance of genetic testing any way I can - so maybe someone someone will pick it up on this forum. 

Regis

I am sorry to hear about your PCUK experience and with consultant.

To be honest I don’t think anyone with influence will pick up importance of generic testing here as there’s onlyna few people on here.

Hope your continuing treatment goes well.

Squeaky

Hi!  your story and mine are very similar!  I am 51years old with a 16 and 18 year old. 

I was diagnosed with breast cancer ( triple negative) in 2002, when my son was 6 weeks old and my daughter 2 1/2y.  i had a  mastectomy, chemo and radiotherapy.  i was told i was only moderate risk for genetic carrier even though two aunts on my father's side died of breast cancer as well as my grandmother.  In 2007 my father died of prostate cancer at the age of 64.  In 2008 i was diagnosed with breast cancer on the other side - this one was oestrogen positive.  i had mastectomy with double reconstruction, chemo therapy, radiotherapy and tamoxifen.  I had my ovaries removed in 2009 and was then switched to Airimidex., which i took for 5 years.  I wasn't too keen on genetic testing, but my sister wanted to know ( she is 5 years younger) and they wouldn't test her without me being tested.  So i did and they said there was no mutation seen. 

in Feb 2019, i developed itching, jaundice and pale stools and a scan showed a mass which might be pancreatic cancer.  I had an endoscopy but they were unable to get a biopsy but they did put in a stent for the bile drainage.  i developed pancreatitis and kidney failure afterwards and was in hospital for 2 weeks, but still very weak and unwell when i went home.  Surgery was delayed waiting for me to recover and then because of covid. In the meantime i developed blockage of the intestine and had to be admitted again. I was on iv fluids and very little by mouth for 2 weeks waiting for surgery.  

At surgery, they found that it had spread to my liver, so they simply bypassed the blockage and closed up.  they didn't even try to remove the tumor or get a good biopsy. 

In view of my third cancer, they repeated the genetic test on the sample they had previously taken with new technology and said that i have the BRCA 2 gene mutation. 

I have since completed 12 cycles of folfironox with apparently good response - the tumor seems a bit smaller on the scan, my CA19 tumor blood test has dropped and i feel strong and well apart from peripheral neuropathy.  ( neve damage in my fingers and toes which is persistent numbness, pins and needles and altered sensations).  

My consultant had mentioned something about about a new drug that is not approved on the NHS but i don't know the name.  He said it is maintenance therapy as in would be used indefinitely used in patients with BRCA2 gene mutations.  thing is it is given every 2 weeks by infusion and i have no iv access .  Because of my previous surgeries for breast cancer, i have lymphoedma and swelling in both arms, so they have to use my feet.   i have had central lines and Hickman  lines in and just had one removed.  

I am curious to know if that is the same drug and how you get on with it. 

I wish you luck and good heaalth