HER2 Support Group Forums - View Single Post - Would you do WBR a Second Time?? Advice ASAP Please

Joan M · 12-30-2010, 09:15 AM

Joyce,

I'm sorry to hear that your daughter's brain mets are not responding to temodor/Avastin. I would try to avoid another round of WBR, if possible.

Targeted radiation like gamma knife is a good choice and even more safe than the stereotactic radiotherapy I had for my brain met, since it's regulated by the radiation authorities and not the FDA. It's not that the SRT (or SRS, stereotactic radiosurgery) is not safe, but it's very complicated to administer, and a lot of problems have been reported lately in The New York Times about people being over-radiated due to miscalculations all around. And the FDA's reporting system for problems is wanting.

As some of the other ladies have said, the gamma knife can be used to treat up to several brain mets. But for some reason, a lot of oncs always suggest WBR first when there's more than one met.

I had only one met but it was 2.6 cm and surgery followed by radiation was recommended. It was in the left frontal lobe. After recovering for six weeks, I received 5 doses of SRT to the tumor bed. That was in October and December of 2008, and I haven't had anything in the brain since. I get a brain MRI every three months.

The gamma knife machinery costs about $3 million, so if your place has one, they probably thought it was worth investing in the technology.

You could also seek another opinion.

Joan

12-30-2010, 09:15 AM	#5
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: Would you do WBR a Second Time?? Advice ASAP Please Joyce, I'm sorry to hear that your daughter's brain mets are not responding to temodor/Avastin. I would try to avoid another round of WBR, if possible. Targeted radiation like gamma knife is a good choice and even more safe than the stereotactic radiotherapy I had for my brain met, since it's regulated by the radiation authorities and not the FDA. It's not that the SRT (or SRS, stereotactic radiosurgery) is not safe, but it's very complicated to administer, and a lot of problems have been reported lately in The New York Times about people being over-radiated due to miscalculations all around. And the FDA's reporting system for problems is wanting. As some of the other ladies have said, the gamma knife can be used to treat up to several brain mets. But for some reason, a lot of oncs always suggest WBR first when there's more than one met. I had only one met but it was 2.6 cm and surgery followed by radiation was recommended. It was in the left frontal lobe. After recovering for six weeks, I received 5 doses of SRT to the tumor bed. That was in October and December of 2008, and I haven't had anything in the brain since. I get a brain MRI every three months. The gamma knife machinery costs about $3 million, so if your place has one, they probably thought it was worth investing in the technology. You could also seek another opinion. 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!!