HER2 Support Group Forums - View Single Post - Brain Mets came back -- Help Needed

Joan M · 01-29-2011, 10:31 AM

Grace,

A few days ago I heard an online discussion with three oncologists. One of the oncologists, Eric Winer, with Dana Farber, Harvard Medical School, spoke only about HER2. Dr. Winer is well known in this field. He said that Herceptin and Tykerb work very well together and should be given together even if a patient progresses while taking Herceptin. Perhaps you should let your onc know about this. I don't know why your onc is "uncomforable" about giving them together. Please ask him why.

During the discussion, I asked Dr. Winer whether the standards for treating breast cancer as put out by the National Comprehensive Cancer Network (NCCN), indicated this combination. He said that he didn't know. The last time I looked, which was not recently, the standards did not support Herceptin and Tykerb, but only Tykerb and Xeloda if a patient progresses while on Herceptin. And often doctors and insurance companies follow those standards.

Dr. Winer said that Herceptin and Tykerb are not FDA approved in combination. But Tykerb and Xeloda are.

The NCCN standards were posted recently to this board.

Joan

01-29-2011, 10:31 AM	#24
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: Brain Mets came back -- Help Needed Grace, A few days ago I heard an online discussion with three oncologists. One of the oncologists, Eric Winer, with Dana Farber, Harvard Medical School, spoke only about HER2. Dr. Winer is well known in this field. He said that Herceptin and Tykerb work very well together and should be given together even if a patient progresses while taking Herceptin. Perhaps you should let your onc know about this. I don't know why your onc is "uncomforable" about giving them together. Please ask him why. During the discussion, I asked Dr. Winer whether the standards for treating breast cancer as put out by the National Comprehensive Cancer Network (NCCN), indicated this combination. He said that he didn't know. The last time I looked, which was not recently, the standards did not support Herceptin and Tykerb, but only Tykerb and Xeloda if a patient progresses while on Herceptin. And often doctors and insurance companies follow those standards. Dr. Winer said that Herceptin and Tykerb are not FDA approved in combination. But Tykerb and Xeloda are. The NCCN standards were posted recently to this board. 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!!