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Old 06-24-2008, 08:30 AM   #7
Joan M
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Thank you all for your responses and insight.

I've read on the board and as Barbara H. mentioned, that the side effects of the MCC-DM1 trial tend to be tolerable. The printout of the protocol for the phase I trial that the onc gave me doesn't say anything specifically about measurable disease so I'm not sure whether my tumor is too small although the onc implied that it is.

Julie, thanks for your note about chemo being an option anytime, but surgery isn't. I'm going to mention that tomorrow to the surgeon.

I know that Sloan-Kettering does RFA of the lung and chemoembolization of the liver but I'm not sure whether they do the latter for the lung. It's interesting as Barb pointed out that Cancer Center of America does not offer surgey as an option but offers chemoembolization, RFA and photodynamic therapy. I've never heard of photodynamic therapy.

Chrisy, thanks for your thoughts on reducing the dose of Xeloda. If I decide to do chemo it seems like Xeloda will be it, so it's good to know that adjusting the dose downward to control side effects is normal. The onc also mentioned about the synergy of Herceptin combined with other agents even though I've progressed on Herceptin.

I like the idea of going for a local treatment and following up with some systemic treatment.

My own onc leans toward systemtic treatment but she would be supportive of my decision if I wanted to do surgery again. I'm just not sure how much weight the surgeon at Sloan will put on her colleague's recommendation.

It's very frustrating as Pat mentioned, and yesterday I was feeling overwhelmed and afterwards felt like I was throwing a hissy fit. Thanks for your patience and hearing me out!

I'll let you know what happens when I meet with the surgeon tomorrow.
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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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