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Rolepaul · 05-25-2015, 08:43 AM

I need to ask if you can get care for the brain mets at Pasteur Institute in Paris. They are doing a clinical trial with Intrathecal Herceptin. A pouch is put in below the skin just above the hairline and Herceptin is injected into the pouch. A small tube allows the herceptin to go below the skull into the brain. There is a protocol to do this. In the States, they have a "Compassionate Care" protocol law that means you can get this done at many cancer centers if you have a protocol to use. I am working to get a general "Compassionate Care" protocol developed that can be used by patients. This law was put in place to help with delays in AIDS clinical trials, but it seems to be a way to do the same with other issues.
Ask you doctor if they use Ommaya reservoirs for Brain Cancers. Then tell them you want one for your brain lesions. Private message me and I can forward information that I have found out about.
If not, ask if they will have Xeloda and Tykerb for the chemo. Also, I would think that if the lesions are small, Stereotactic Radiation (called Gamma Knife) might stop the growth of the brain lesions. Generally they need to be under 2 cm in largest length.
I would contact Roche/Genentech Patient Advocate Services to see if they can help with the Kadcyla price. I would mention being 49 and having four children. The cost here is $96,000 for a 9 month treatment regimen, dosing once every three weeks. I am not sure how to get around the problem with your health services limitations.
Lastly, keep reading on this blog. There are a number of new areas that are being researched, including those that have significantly less side effects.

05-25-2015, 08:43 AM	#17
Rolepaul Senior Member Join Date: Jan 2012 Location: Boulder Colorado as of January 2013 Posts: 389	Re: Looking at Clinical Trials I need to ask if you can get care for the brain mets at Pasteur Institute in Paris. They are doing a clinical trial with Intrathecal Herceptin. A pouch is put in below the skin just above the hairline and Herceptin is injected into the pouch. A small tube allows the herceptin to go below the skull into the brain. There is a protocol to do this. In the States, they have a "Compassionate Care" protocol law that means you can get this done at many cancer centers if you have a protocol to use. I am working to get a general "Compassionate Care" protocol developed that can be used by patients. This law was put in place to help with delays in AIDS clinical trials, but it seems to be a way to do the same with other issues. Ask you doctor if they use Ommaya reservoirs for Brain Cancers. Then tell them you want one for your brain lesions. Private message me and I can forward information that I have found out about. If not, ask if they will have Xeloda and Tykerb for the chemo. Also, I would think that if the lesions are small, Stereotactic Radiation (called Gamma Knife) might stop the growth of the brain lesions. Generally they need to be under 2 cm in largest length. I would contact Roche/Genentech Patient Advocate Services to see if they can help with the Kadcyla price. I would mention being 49 and having four children. The cost here is $96,000 for a 9 month treatment regimen, dosing once every three weeks. I am not sure how to get around the problem with your health services limitations. Lastly, keep reading on this blog. There are a number of new areas that are being researched, including those that have significantly less side effects.