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Re: brain mets - loss continues
Hezzy,
I'm sorry that your onc was rude, and it would serve you well to get another opinion and even change oncs to someone more understanding of the stress that bc patients are under.
This is a great website for HER2+ bc and I'm glad you discovered it.
I had one brain met discovered in October. It was almost 3 cm. It was removed surgically, and then I had five shots of radiation to the tumor bed with stereotatic radiotherapy (SRT).
I'm only on Herceptin since I don't have any mets elsewhere and the brain tumor was taken out. However, Tykerb (which is an antibody like Herceptin), is supposed to cross the blood brain barrier, and there's also Temodar, a chemo drug. Although it wasn't developed specifically for brain mets.
I'm not clear on whether you are having whole brain radiation. It seems that you are. And I'm unclear about whether the tumors are in places where it would be hard to remove surgically. After radiation, are they considering removing all the tumors surgically that don't disappear?
There is some basic information on the home page under the Metastatsis link (along the top). You can look specifically at the sections, Whole Brain Radiation Therapy, Whole Brain Radiation, Gammaknife, Cyberknife, and IMRT.
Also, other women and men on the board have dealt with bc brain mets and they can also provide support.
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 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
Last edited by Joan M; 08-13-2009 at 08:55 AM..
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