HER2 Support Group Forums - View Single Post - Any Stage IV deciding to go off Herceptin?

Joan M · 11-19-2008, 09:28 PM

Kim,

You're having great results with Herceptin, and I can understand how it's a hard decision to go off of it. Being stage IV since spring 2007 with one met to the lung that was cleared up via a wedge resection and then subsequently with radiofrequency ablation in 2008 when it recurred, and with recent brain surgery for a single met, I'll be on the drug for a while as long as my heart holds out.

It's the only drug I've been taking since my cancer advanced because with the local treatments for the lung and brain I then became NED. Right now I'm trying to decide whether to add Xeloda and/or Tykerb, but will have my brain radiation first in a few weeks.

I'm curious about the CTC test, and plan to ask my oncologist about getting the test.

Joan

11-19-2008, 09:28 PM	#35
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Kim, You're having great results with Herceptin, and I can understand how it's a hard decision to go off of it. Being stage IV since spring 2007 with one met to the lung that was cleared up via a wedge resection and then subsequently with radiofrequency ablation in 2008 when it recurred, and with recent brain surgery for a single met, I'll be on the drug for a while as long as my heart holds out. It's the only drug I've been taking since my cancer advanced because with the local treatments for the lung and brain I then became NED. Right now I'm trying to decide whether to add Xeloda and/or Tykerb, but will have my brain radiation first in a few weeks. I'm curious about the CTC test, and plan to ask my oncologist about getting the test. 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!!