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

Rolepaul · 05-15-2012, 12:34 PM

Nina gets down at times, but is now looking to go back to giving therapeutic massages or being a clinic RN. The IT Herceptin with Methotrexate was a good first thought, but the darn stuff irritated the brain surface and caused some problems. One of the contacts on this site had her daughter have an issue with insurance that got my attention and the doctor transitioned to the topotecan as that had previously been run at MD Anderson with okay results. Piggybacking the two together was the secret. I wish it had been done five years ago and saved hundreds, if not thousands, of lives. We keep spreading the information to help others. Nina is getting ready for her 53rd birthday in July and just spent Mother's Day in Washington DC with our son.

Success is not measured by the number of steps you take to your target, but by the number of ones that are past your target. We left the target from the initial assessment from Xmas 2011 back three months ago, and we are not going to look over our shoulders again.

Paul and Nina

05-15-2012, 12:34 PM	#5
Rolepaul Senior Member Join Date: Jan 2012 Location: Boulder Colorado as of January 2013 Posts: 389	Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease Nina gets down at times, but is now looking to go back to giving therapeutic massages or being a clinic RN. The IT Herceptin with Methotrexate was a good first thought, but the darn stuff irritated the brain surface and caused some problems. One of the contacts on this site had her daughter have an issue with insurance that got my attention and the doctor transitioned to the topotecan as that had previously been run at MD Anderson with okay results. Piggybacking the two together was the secret. I wish it had been done five years ago and saved hundreds, if not thousands, of lives. We keep spreading the information to help others. Nina is getting ready for her 53rd birthday in July and just spent Mother's Day in Washington DC with our son. Success is not measured by the number of steps you take to your target, but by the number of ones that are past your target. We left the target from the initial assessment from Xmas 2011 back three months ago, and we are not going to look over our shoulders again. Paul and Nina