HER2 Support Group Forums - View Single Post - Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases)

Rolepaul · 07-11-2012, 06:13 AM

ehower,

Please have your physician contact Monica Loghin at MD Anderson in Houston Texas. She can give the doctor information about how it was administered for Nina, the clinical signs to look for, and the outcome that shows No Evidence of Disease in the brain, spine, or rest of the body. Then I would appeal to the next level within the administration. If that does not work, I would look at a major cancer center and ask them if they will try it (Clevela nd Clinic in the West, maybe Sloan Kettering in the East). The way to explain it is that Herceptin is the standard treatment for HER+ disease, intrathecal treatment is the standard for CNS involvement, and that the two together are the natural development (Reese's Peanut Butter cups concept). Both have been used for ten years, so there is adequate history on them separately. If you google search "Herceptin Brain" there is a case in Germany performed by a Spanish doctor which had exceptional results. Likewise, there was one in Japan, and a couple more that I was able to access. I only had four days to do research due to the deterioration in health that was occurring in Nina's case. Then do a "Compassionate Care" request. This is like a one person clinical trial. You will sign that you and your your family will not sue the doctors for any negative outcome. If they chose to you an Ommaya reservoir, there will be a short general anasthesia operation to place it. If you choose lumbar puncture, that surgical intervention is not needed. I would pick 40 mg for a couple of doses to determine if there is a negative reaction, and go to 1.333 mg/kg and stay there until the MRI shows no uptake in the area of the tumors.

Good data on what you are asking, with the ability for the doctor to contact others who have given treatment is important. I was able to send a message very high up in the organization that treated my wife. Mario had approval for the clinical studies for Carol. Sometimes all it takes is the physician knowing that you will do it with or without them to get approval.

Good luck and let me know if I can help.

Paul

07-11-2012, 06:13 AM	#37
Rolepaul Senior Member Join Date: Jan 2012 Location: Boulder Colorado as of January 2013 Posts: 389	Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase ehower, Please have your physician contact Monica Loghin at MD Anderson in Houston Texas. She can give the doctor information about how it was administered for Nina, the clinical signs to look for, and the outcome that shows No Evidence of Disease in the brain, spine, or rest of the body. Then I would appeal to the next level within the administration. If that does not work, I would look at a major cancer center and ask them if they will try it (Clevela nd Clinic in the West, maybe Sloan Kettering in the East). The way to explain it is that Herceptin is the standard treatment for HER+ disease, intrathecal treatment is the standard for CNS involvement, and that the two together are the natural development (Reese's Peanut Butter cups concept). Both have been used for ten years, so there is adequate history on them separately. If you google search "Herceptin Brain" there is a case in Germany performed by a Spanish doctor which had exceptional results. Likewise, there was one in Japan, and a couple more that I was able to access. I only had four days to do research due to the deterioration in health that was occurring in Nina's case. Then do a "Compassionate Care" request. This is like a one person clinical trial. You will sign that you and your your family will not sue the doctors for any negative outcome. If they chose to you an Ommaya reservoir, there will be a short general anasthesia operation to place it. If you choose lumbar puncture, that surgical intervention is not needed. I would pick 40 mg for a couple of doses to determine if there is a negative reaction, and go to 1.333 mg/kg and stay there until the MRI shows no uptake in the area of the tumors. Good data on what you are asking, with the ability for the doctor to contact others who have given treatment is important. I was able to send a message very high up in the organization that treated my wife. Mario had approval for the clinical studies for Carol. Sometimes all it takes is the physician knowing that you will do it with or without them to get approval. Good luck and let me know if I can help. Paul