IT herceptin for brain mets only??

[dearjilly]

Hiya,
I can't seem to find any clinical trials for IT herceptin for brain mets only. They are only available in the US if you have leptomeningeal involvement.
Is this correct? Has anyone else found anything out there for only brain mets?
I don't think there's anything here in Canada.
I would be on the first flight to wherever, whenever, to get this.

[Ellie F]

Hi
Have you checked if there are any trials in England? I know its a long way away but would be happy to offer you accommodation if there's a suitable one.
Ellie

[dearjilly]

Oh Ellie,
How about I just come for a visit! lol
You are so great!
I will look in to it though. UK, all the way!! :)

[caya]

Jilly, have you researched PMH (Princess Margaret Hospital) here in Toronto - it's the number one cancer hospital in Canada, often noted as in the top 5 worldwide. Approximately 20% of patients are on clinical trials there.

I had my mastectomy there, and follow-up with my breast surgeon for 3 years afterwards. Also have my yearly lymphedema appointment there.

I would look into calling them on Monday morning. Sometimes a phone call and speaking to a live person can get you further than just milling around on websites.

all the best
caya

[dchips1]

Some of us talk local oncologist into doing it off label. I am using IT Herceptin for spinal mets.

Good luck to you

Darita

[dearjilly]

Caya, I've been to PM for a couple of things, like new surgeon to do my other breast. That is on hold at the moment, as I have to deal with the uncertainty of my brain. Thanks for the thought on PM and trials. I'm on their website right now.
Darita, Thank you. I will ask my doctor again and may just beg, if it comes down to the fact that I have progression. Still hoping for necrosis after radiation. Keep us posted on the IT herceptin. What's it like?
Jill

[dearjilly]

This is the reply that I got back from a clinical trials guy:
For LM disease it can be seen sometimes on MRI’s or if a spinal tap is done. It is not clear that giving it into the spinal fluid would allow it to penetrate into the brain to be of value.

I am unaware of anyone.

Sorry.

[marvass]

My wife had deep brain mets and it has worked, but by a local oncologist, off label.
Mario

[dearjilly]

Thanks Mario, I PM'd you.
Cheers! Jill