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Joan M · 01-27-2013, 07:18 PM

Jackie,

Thanks for the link to 'lizbeth's thread. It was a very concise explanation of the Myriad Genetics case. I can understand how there could be a link with a BRCA1/2 mutation (with a slight twist). Last year, a friend of a friend who has never had breast cancer had a genetic profile done through 23andMe. She's mostly Norwegian American, but 13% of her genes are of Asian origin. Genes get passed on, and sometimes geography is not a boundary. It was good that you followed through on being tested.

'lizbeth thanks for posting the thread and participating in a clinical trial. I would agree about women not being able to obtain a new drug because they don't fit the criteria precisely. It's very frightening. I can tell that you are aware of the politics that are often involved in cancer research and clinical trials. As an advocate, I often become frustrated when dealing with pharmaceutical companies. They frequently want us to connect them to potential enrollees, but then they're not responsive if we want to get involved with clinical trial design.

Joan

01-27-2013, 07:18 PM	#7
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: Why am I not surprised? Jackie, Thanks for the link to 'lizbeth's thread. It was a very concise explanation of the Myriad Genetics case. I can understand how there could be a link with a BRCA1/2 mutation (with a slight twist). Last year, a friend of a friend who has never had breast cancer had a genetic profile done through 23andMe. She's mostly Norwegian American, but 13% of her genes are of Asian origin. Genes get passed on, and sometimes geography is not a boundary. It was good that you followed through on being tested. 'lizbeth thanks for posting the thread and participating in a clinical trial. I would agree about women not being able to obtain a new drug because they don't fit the criteria precisely. It's very frightening. I can tell that you are aware of the politics that are often involved in cancer research and clinical trials. As an advocate, I often become frustrated when dealing with pharmaceutical companies. They frequently want us to connect them to potential enrollees, but then they're not responsive if we want to get involved with clinical trial design. Joan __________________ Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!