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Old 06-24-2012, 08:16 AM   #19
Joan M
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Join Date: Oct 2007
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Good luck, Marvass. I'm going to ask my neuro-onc about the procedure. When I first had a brain met in Oct 2008 I asked my former neuro-onc (who was at the same institution as my current one, but has since left), and he had never heard of it. I was a little surprised because it was at Sloan-Kettering. I was prompted to ask him, because I had read about a trial in Germany about intrathecal herceptin. That was the only information I could find about the procedure at that time. I wonder what the new neuro-onc will say.

I was treated with Herceptin at Sloan-Kettering for only about a year or so, but switched to another hospital a little over a year ago. However, I've had other services there and continue to follow up with them.

Joan
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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!!
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