HER2 Support Group Forums - View Single Post - Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Rolepaul · 06-10-2012, 07:53 AM

Lani,

So the clinical trial shows an overall survival of 3.8 months on average. That is unacceptable! Intrathecal Herceptin has been shown to eliminate the detectable presence of Leptomeningeal disease in almost every case that has been noted in literature or on the internet if at least 50 mg per week is used. I was contacted by one gentleman whose wife died, but of liver or pancreatic cancer a few months after treatment. Most of the other patients are still alive, or passed away from other causes years after the treatment. It took four solid days of work to get all the information about this treatment method for Nina and getting treatment started was extremely difficult due to politics of not having the number of cases out there to make the doctors comfortable initially.

Dr. Raizer is struggling to get women for treatment. That is what is even more frustrating. The studies at Northwestern and in France are not well advertised, without the completion of the trial there is no documentation of positive results, without positive results there is no knowledge in the community or health industry to inform doctors and patients. Dr. Razier's study is to determine the amount of Intrathecal Herceptin that is tolerable. There are already 12 patients that have 50 mg or more per week. I would have thought that it would have been higher dosages than the 10 mg twice weekly or 20 mg twice weekly lower dosages.

Nina is already down to once per two week treatment with NED in the brain, spine, or anywhere else, Mario's wife has already started treatment, Lisa looks like she should get her treatment started within ten days, and there are other contacts I am working with to get this done through compassionate care if they can't get into the Northwestern trial. If there are the numbers of patients with Lepto disease as it sounds like, there are too many for this trial. There is talk of MD Anderson personnel getting a large scale trial started, but the provider of Herceptin, Genentech, has some reservations about providing funding for a large study. They need to have some "push" to get this concept going. I am pushing NCI, NIH, ACS, Susan B Komen, and anybody else I can to get some help for a trial.

Let me know what we need to do from your thoughts.

Mario's wife Carol is now at 50 mg per weekly dose. MRIs in three weeks to show progress. I feel like I am a one man army, but getting recruits as people find out about how to fight this war on Lepto involvemenr with HER+.

06-10-2012, 07:53 AM	#19
Rolepaul Senior Member Join Date: Jan 2012 Location: Boulder Colorado as of January 2013 Posts: 389	Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease Lani, So the clinical trial shows an overall survival of 3.8 months on average. That is unacceptable! Intrathecal Herceptin has been shown to eliminate the detectable presence of Leptomeningeal disease in almost every case that has been noted in literature or on the internet if at least 50 mg per week is used. I was contacted by one gentleman whose wife died, but of liver or pancreatic cancer a few months after treatment. Most of the other patients are still alive, or passed away from other causes years after the treatment. It took four solid days of work to get all the information about this treatment method for Nina and getting treatment started was extremely difficult due to politics of not having the number of cases out there to make the doctors comfortable initially. Dr. Raizer is struggling to get women for treatment. That is what is even more frustrating. The studies at Northwestern and in France are not well advertised, without the completion of the trial there is no documentation of positive results, without positive results there is no knowledge in the community or health industry to inform doctors and patients. Dr. Razier's study is to determine the amount of Intrathecal Herceptin that is tolerable. There are already 12 patients that have 50 mg or more per week. I would have thought that it would have been higher dosages than the 10 mg twice weekly or 20 mg twice weekly lower dosages. Nina is already down to once per two week treatment with NED in the brain, spine, or anywhere else, Mario's wife has already started treatment, Lisa looks like she should get her treatment started within ten days, and there are other contacts I am working with to get this done through compassionate care if they can't get into the Northwestern trial. If there are the numbers of patients with Lepto disease as it sounds like, there are too many for this trial. There is talk of MD Anderson personnel getting a large scale trial started, but the provider of Herceptin, Genentech, has some reservations about providing funding for a large study. They need to have some "push" to get this concept going. I am pushing NCI, NIH, ACS, Susan B Komen, and anybody else I can to get some help for a trial. Let me know what we need to do from your thoughts. Mario's wife Carol is now at 50 mg per weekly dose. MRIs in three weeks to show progress. I feel like I am a one man army, but getting recruits as people find out about how to fight this war on Lepto involvemenr with HER+.