public information

[Nana2three]

I appreciate being able to find this site but being a private person I am leery of putting up my picture or giving out TMI. There is always a price to pay and I just have to weigh the risks.

Having BC has made me feel vulnerable and my typical personna has always been in control and I'm not liking this feeling. After watching Living Proof last night, I feel fortunate to have something available to fight with today. Now if I could just find a new MS med they would let me take while on herceptin I'd be a happy camper.

Blessings,

[Lani]

Nana I have been researching papers the effect of herceptin on the central nervous system--her2 is important in the migration of the neural crest (precursor of the nervous system) in embryology, but not so much it seems in peripheral nerve repair in adulthood. It seems herceptin does have an effect on leprosy-- a good one, where there seems to be remyelination!

I am curious to find out whether being on herceptin and not your other MS drugs has a good effect on you.

My latest theory, since herceptin does not cross the blood-brain barrier, is that there might be an improvement of CNS injury (spinal cord or brain) due to an excess of Neuregulin -- it cannot bind to her3 peripherally as her3s are busy being bound up in her2-her3-herceptin complexes, leaving excess neuregulin to migrate to the CNS and improve CNS injuries.

Hope my theory is in some way correct and your MS does not suffer..

Dr.Ronald Levy at Stanford (inventor of rituxumab, the first monoclonal antibody approved--for lymphoma) once told me one of his colleagues' wife who had MS, had noted improvement while in herceptin.. Anecdotal, but intriguing!

Best of luck

[Lani]

Nana I have been researching papers on the effect of herceptin on the central nervous system--her2 is important in the migration of the neural crest (precursor of the nervous system) in embryology, but not so much it seems in peripheral nerve repair in adulthood. It seems herceptin does have an effect on leprosy-- a good one, where there seems to be remyelination!

I am curious to find out whether being on herceptin and not your other MS drugs has a good effect on you.

My latest theory, since herceptin does not cross the blood-brain barrier, is that there might be an improvement of CNS injury (spinal cord or brain) due to an excess of Neuregulin -- it cannot bind to her3 peripherally as her3s are busy being bound up in her2-her3-herceptin complexes, leaving excess neuregulin to migrate to the CNS and improve CNS injuries.

Hope my theory is in some way correct and your MS does not suffer..

Dr.Ronald Levy at Stanford (inventor of rituxumab, the first monoclonal antibody approved--for lymphoma) once told me one of his colleagues' wife who had MS, had noted improvement while on herceptin.. Anecdotal, but intriguing!

Best of luck

[ElaineM]

This is exactly why I am very careful about posting personal information online no matter where I am posting. I still do not bank online and all my e-mail and other accounts do not have my full name, complete contact information or medical history.
Many of us also signed hippa documents protecting our privacy in our doctor's offices. If our hospitals allow us to access our own medical information online we need a password to do so.
We have experienced spam at her2support.org. No one knows what information the spammers and other visitors are gathering about us. We want to be able to share information freely and help each other, but we still have to be careful about very personal information everywhere online. I agree with Marynne.
Do an internet search on your name and see what comes up. You might be surprised.