HER2 Support Group Forums - View Single Post - When it rains it doesn't always pour- right?

Joan M · 06-24-2012, 07:56 AM

Kristin,

Just a case in point, as a follow-up to my earlier post about off-label prescriptions.

When I had stage II bc in 2003, I took Herceptin off-label rather than enroll in the adjuvant Herceptin trial (I had the same protocol as the trial for those in the arm that received Herceptin). Herceptin had first been FDA-approved in the late 90s for only metastatic bc, but my insurance company approved the drug for me for an entire year even though the adjuvant trial was ongoing at that time. They never said they weren't going to pay for the drug because it had been approved for only metastatic disease, and I was taking it in the adjuvant setting. But that was my insurance carrier's taken on it, another insurer might have denied coverage.

Joan

06-24-2012, 07:56 AM	#13
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: When it rains it doesn't always pour- right? Kristin, Just a case in point, as a follow-up to my earlier post about off-label prescriptions. When I had stage II bc in 2003, I took Herceptin off-label rather than enroll in the adjuvant Herceptin trial (I had the same protocol as the trial for those in the arm that received Herceptin). Herceptin had first been FDA-approved in the late 90s for only metastatic bc, but my insurance company approved the drug for me for an entire year even though the adjuvant trial was ongoing at that time. They never said they weren't going to pay for the drug because it had been approved for only metastatic disease, and I was taking it in the adjuvant setting. But that was my insurance carrier's taken on it, another insurer might have denied coverage. 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!!