HER2 Support Group Forums - View Single Post - Advanced HER2+ disease in the era of adjuvant Herceptin

Joan M · 06-09-2014, 07:43 AM

Great questions, Deb!

I did Herceptin off label in 2004 after being diagnosed in fall 2003 at stage II with 7+ nodes. I didn't try to enroll in the Herceptin adjuvant clinical trial because of the positive nodes and not wanting to pull the straw without the Hercpetin.

I asked my oncologist to give me Herceptin off label after I had AC. It was administered with T. I recurred to the lung in January 2007. Yet, Herceptin is the only drug I've been on since then, despite another lung recurrence in the same area of the lung (wedge resection to remove first recurrence and RFA to ablate the second one) and a brain met (craniotomy followed by IMRT).

So, it's hard to tell in my case because of the local procedures. No evidence-based medicine there.

Laurie, I never realized that you had an RFA of the liver in Feb. 2011. When I did it in 2008, it was considered "blasphemous." Like, how dare I do such a procedure! Talk about getting crap on a crap stick (to quote Brenda again) from all the medical oncologists!
Ditto for the wedge resection.

But I had an oncologist who understood. She also has a doctorate in microbiology, so perhaps she's cut from a different cloth. But even she said about the RFA, "I wouldn't do that if I were you." Needless to say, I did it anyway, and my current oncologist said that he can tell from that, how I don't get an A+ for obeying. I love them both!

06-09-2014, 07:43 AM	#5
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: Advanced HER2+ disease in the era of adjuvant Herceptin Great questions, Deb! I did Herceptin off label in 2004 after being diagnosed in fall 2003 at stage II with 7+ nodes. I didn't try to enroll in the Herceptin adjuvant clinical trial because of the positive nodes and not wanting to pull the straw without the Hercpetin. I asked my oncologist to give me Herceptin off label after I had AC. It was administered with T. I recurred to the lung in January 2007. Yet, Herceptin is the only drug I've been on since then, despite another lung recurrence in the same area of the lung (wedge resection to remove first recurrence and RFA to ablate the second one) and a brain met (craniotomy followed by IMRT). So, it's hard to tell in my case because of the local procedures. No evidence-based medicine there. Laurie, I never realized that you had an RFA of the liver in Feb. 2011. When I did it in 2008, it was considered "blasphemous." Like, how dare I do such a procedure! Talk about getting crap on a crap stick (to quote Brenda again) from all the medical oncologists! Ditto for the wedge resection. But I had an oncologist who understood. She also has a doctorate in microbiology, so perhaps she's cut from a different cloth. But even she said about the RFA, "I wouldn't do that if I were you." Needless to say, I did it anyway, and my current oncologist said that he can tell from that, how I don't get an A+ for obeying. I love them both! __________________ 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!!