HER2 Support Group Forums - View Single Post - T-DM1 & Pertuzumab: Still NED

Joan M · 06-22-2012, 04:03 PM

Karen,

My tumor markers were useless, and my onc recently stopped doing them. I felt like my security blanket had been taken away, even though the markers have never been out of normal range with a recurrence twice in the lung and once in the brain.

My hair grew back after IMRT. I had a 2-inch round bald spot, but it wasn't noticeable because of the part in my hair. The bald spot was on the left, just back from the temple by about 2 inches. I'm not sure whether the hair grows back with WBR.

Praying for an unremarkable brain MRI.

Joan

06-22-2012, 04:03 PM	#24
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: T-DM1 & Pertuzumab: Still NED Karen, My tumor markers were useless, and my onc recently stopped doing them. I felt like my security blanket had been taken away, even though the markers have never been out of normal range with a recurrence twice in the lung and once in the brain. My hair grew back after IMRT. I had a 2-inch round bald spot, but it wasn't noticeable because of the part in my hair. The bald spot was on the left, just back from the temple by about 2 inches. I'm not sure whether the hair grows back with WBR. Praying for an unremarkable brain MRI. 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!!