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Joan M · 09-02-2009, 08:33 AM

Sheila,

Geez, I'm a newbie.

I took Herceptin off label weekly for one year (2004-2005) without problems when I was first diagnosed with early stage bc in fall 2003.

I resumed the drug when the cancer spread to my lung in spring 2007. But was taken off it once for three months when my LVEF dropped more than 10% (which apparently is the protocol) in fall 2007, even though it was still above 50% (it dropped from 70% to 56%).

Other than that, I haven't had any other problems.

Joan

09-02-2009, 08:33 AM	#17
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: Roll Call Long Time Herceptin Users Sheila, Geez, I'm a newbie. I took Herceptin off label weekly for one year (2004-2005) without problems when I was first diagnosed with early stage bc in fall 2003. I resumed the drug when the cancer spread to my lung in spring 2007. But was taken off it once for three months when my LVEF dropped more than 10% (which apparently is the protocol) in fall 2007, even though it was still above 50% (it dropped from 70% to 56%). Other than that, I haven't had any other problems. 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 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!