HER2 Support Group Forums - View Single Post - brain mets

CourtneyL · 08-17-2009, 04:06 PM

Wow, I can't believe your doc said that. I would drop him like a hot rock in favor of someone more informed. There are most definitely drugs that cross the blood brain barrier - I'm on two of them - Tykerb and Xeloda. While Tykerb hasn't been proven to be too effective by itself, in combination with Xeloda, the literature suggests that the combo can be effective in controlling brain mets.

Another suggestion for a second opinion is the Block Center for Integrative Cancer Care in Evanston, IL. I met Dr. Block a few weeks ago and he is incredibly progressive in his treatment of cancer.

I think it is so helpful to have medical practitioners on our side who are willing to think outside the box. I hope and pray that you will find someone who will champion your cause and will not be so narrow-minded in their approach to treating your brain mets. These things can be treated and you can go on to lead a normal life. I was diagnosed with brain mets last December and I am doing well and going strong today. I pray that the same will be true for you. You will be in my thoughts and prayers.

08-17-2009, 04:06 PM	#17
CourtneyL Senior Member Join Date: Aug 2008 Location: San Francisco Posts: 260	Re: brain mets - loss continues Wow, I can't believe your doc said that. I would drop him like a hot rock in favor of someone more informed. There are most definitely drugs that cross the blood brain barrier - I'm on two of them - Tykerb and Xeloda. While Tykerb hasn't been proven to be too effective by itself, in combination with Xeloda, the literature suggests that the combo can be effective in controlling brain mets. Another suggestion for a second opinion is the Block Center for Integrative Cancer Care in Evanston, IL. I met Dr. Block a few weeks ago and he is incredibly progressive in his treatment of cancer. I think it is so helpful to have medical practitioners on our side who are willing to think outside the box. I hope and pray that you will find someone who will champion your cause and will not be so narrow-minded in their approach to treating your brain mets. These things can be treated and you can go on to lead a normal life. I was diagnosed with brain mets last December and I am doing well and going strong today. I pray that the same will be true for you. You will be in my thoughts and prayers. __________________ 4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++ April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response! Sept 08-Dec 08: Herceptin +Zometa for maintenance. Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait. April 09: Gamma Knife 10 brain mets, add Xeloda. Sept 09: Gamma Knife to 1 brain met. Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa. May 10- Sept 10: HER2 Vaccine Trial Sept 10: Add Tykerb for more brain mets. Oct 10: Gamma Knife to 7 brain mets. Dec 10: Switch from Zometa to Denosumab. Jan 11: Gamma Knife to 3 brain mets. March 11: Gemzar/Herceptin for lung/bone progression. April 11: More brain mets - Intrathecal Herceptin June 11: Ixempra/Herceptin for lung, soft tissue progression. Aug 11: Gamma Knife Sep 11: Abraxane/Herceptin Future: NED Send me a PM if you'd like to follow my journey on Caringbridge.