HER2 Support Group Forums - View Single Post - Sisters with Mets...should I stop Herceptin?

Joan M · 03-26-2013, 06:28 AM

Ann, I'm praying that T-DM1 does the trick for you for NED, like it has for other women on the board. Hang in there, girl!!

I complain to my onc that H is ruining my nails, but he disagrees. Otherwise, my symptoms from H have been moderate, and thankfully my heart has been holding up. I get an echo every 6 months.

I also wonder about when I would consider stopping H if I continue to be NED. I've been NED since October 2008. My cancer advanced to stage 4 in January 2007, and I have been on only H since it advanced because I chose local treatments to remove the nodules. My onc offered Xeloda (6 months) and Tykerb, but I turned them down. I often think about a vaccine trial, but I'm afraid to upset the apple cart. My body seems like it's in some kind of balance thus far (who knows?), and I'm afraid that a vaccine could counteract that. I had CT scans of the chest, abdomen, and pelvis a few weeks ago, and all is still NED.

It seems like a mixed bag of whose tumors come back, and I'm not sure whether that's tied to how long you've been on H. It might just be individual.

Joan

03-26-2013, 06:28 AM	#56
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: Sisters with Mets...should I stop Herceptin? Ann, I'm praying that T-DM1 does the trick for you for NED, like it has for other women on the board. Hang in there, girl!! I complain to my onc that H is ruining my nails, but he disagrees. Otherwise, my symptoms from H have been moderate, and thankfully my heart has been holding up. I get an echo every 6 months. I also wonder about when I would consider stopping H if I continue to be NED. I've been NED since October 2008. My cancer advanced to stage 4 in January 2007, and I have been on only H since it advanced because I chose local treatments to remove the nodules. My onc offered Xeloda (6 months) and Tykerb, but I turned them down. I often think about a vaccine trial, but I'm afraid to upset the apple cart. My body seems like it's in some kind of balance thus far (who knows?), and I'm afraid that a vaccine could counteract that. I had CT scans of the chest, abdomen, and pelvis a few weeks ago, and all is still NED. It seems like a mixed bag of whose tumors come back, and I'm not sure whether that's tied to how long you've been on H. It might just be individual. 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!! Last edited by Joan M; 03-26-2013 at 06:33 AM..