HER2 Support Group Forums - View Single Post - SystHERs Registry: Something for you from Genentech

Joan M · 08-24-2012, 01:37 PM

Hello Ladies and Gents,

Sonali Padhi of Genentech asked me to post this information about the registry to the board. It's a great opportunity to have your voice heard, for the benefit of all HER2+ survivors, if you fall within the criterion. Would one of the powers that be please post this message as a sticky.

Thanks.

Joan

The SystHERs (Systemic Therapies for HER2+ metastatic breast cancer study) Registry is an observational research cohort study for women and men with HER2 positive metastatic breast cancer diagnosed within 6 months of enrollment. The purpose of this registry is to observe treatments and outcomes (clinical and patient reported) in 1000 patients with HER2 positive metastatic breast cancer. Enrollment began in June 2012 and 7 sites are currently active in August 2012. SystHERs aims to have 100 US sites active by the end of 2012, with each site enrolling at least 10 patients in the next 3 years. Patients will be followed for 5-8 years with quarterly physician and patient reported outcomes. For more information, please search for SystHERs on clinicaltrials.org or call 1-888-662-6728 (U.S. Only) or email genentechclinicaltrials@druginfo.com

08-24-2012, 01:37 PM	#1
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	SystHERs Registry: Something for you from Genentech Hello Ladies and Gents, Sonali Padhi of Genentech asked me to post this information about the registry to the board. It's a great opportunity to have your voice heard, for the benefit of all HER2+ survivors, if you fall within the criterion. Would one of the powers that be please post this message as a sticky. Thanks. Joan The SystHERs (Systemic Therapies for HER2+ metastatic breast cancer study) Registry is an observational research cohort study for women and men with HER2 positive metastatic breast cancer diagnosed within 6 months of enrollment. The purpose of this registry is to observe treatments and outcomes (clinical and patient reported) in 1000 patients with HER2 positive metastatic breast cancer. Enrollment began in June 2012 and 7 sites are currently active in August 2012. SystHERs aims to have 100 US sites active by the end of 2012, with each site enrolling at least 10 patients in the next 3 years. Patients will be followed for 5-8 years with quarterly physician and patient reported outcomes. For more information, please search for SystHERs on clinicaltrials.org or call 1-888-662-6728 (U.S. Only) or email genentechclinicaltrials@druginfo.com __________________ 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 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!