HER2 Support Group Forums - View Single Post - Finally

Joan M · 10-24-2011, 01:24 PM

Hi Andi,

It's great to see you on the board again, and a relief to know that you're still doing well. You look wonderful!!

I took Herceptin off-label when I was diagnosed with early stage bc in September 2003. Since I had 7 positive nodes, I didn't want to risk drawing the arm in the Herceptin trial that didn't get the drug, so I didn't enter the trial. But my local onc agreed to give it to me off-label along with my other chemo (AC and Taxol).

The cancer advanced to the lung in early 2007, recurred in the lung in 2008, and spread to the brain in 2008. I've been NED since the brain surgery and 5 dosages of targeted IMRT radiation to the tumor bed. I have been only on Herceptin every 3 weeks since the cancer first spread because I had local treatments which removed each nodule. Adjuvant courses of chemo were offered after each procedure as insurance, but I decided against them. Sometimes I regret that, but I guess that's water over the damn.

Thanks for the heads-up on my PM in-box being full. I have to empty it out. I have to change my e-mail address also, as the one listed is incorrect.

Joan

10-24-2011, 01:24 PM	#29
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: Finally - a Vaccine Trial for me! Hi Andi, It's great to see you on the board again, and a relief to know that you're still doing well. You look wonderful!! I took Herceptin off-label when I was diagnosed with early stage bc in September 2003. Since I had 7 positive nodes, I didn't want to risk drawing the arm in the Herceptin trial that didn't get the drug, so I didn't enter the trial. But my local onc agreed to give it to me off-label along with my other chemo (AC and Taxol). The cancer advanced to the lung in early 2007, recurred in the lung in 2008, and spread to the brain in 2008. I've been NED since the brain surgery and 5 dosages of targeted IMRT radiation to the tumor bed. I have been only on Herceptin every 3 weeks since the cancer first spread because I had local treatments which removed each nodule. Adjuvant courses of chemo were offered after each procedure as insurance, but I decided against them. Sometimes I regret that, but I guess that's water over the damn. Thanks for the heads-up on my PM in-box being full. I have to empty it out. I have to change my e-mail address also, as the one listed is incorrect. 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!!