Looking at Clinical Trials

Lesleycstephen · 05-25-2015, 03:14 AM

Hi all

I live in Scotland, UK and find this site really helpful for information on Her2 treatments.

Unfortunately I was dx with primary and secondary at the same time, a year ago, and it had already gone to my liver, lungs and bones. Im only 49 with 4 kids and otherwise had been in great health!

12 cycles of Docetaxol and Herceptin later and the cancer had all but visibly gone. Unfortunately I had an allergic reaction to Perjeta so I can't take it any longer, and I stayed on perception only.

But a month ago, 3 months after stopping chemo, the cancer was back. Seems the Herceptin hasn't done anything to stop the growth - back in my lungs and very unfortunately 3 small brain mets too (though no symptoms).

Like all of us I am DESPERATE to stay here for as long as I can, for the sake of my family. I have just started on Xeloda and an hoping I will respond as well to it as I did to Docetaxol, but I also know my body can only take so much chemo.

I see there are so many Phase 1 and 2 trials in the US for HER2 metastatic cancer and wondered if anyone knows how a non US citizen would get on them? Or is that a totally ridiculous idea?! I am willing to travel if there was something that looked worthwhile.

Also, what are the most promising treatments for someone like me? I know Kadcyla would be next, though I will probably have to pay for that somehow as its not funded by our NHS.

All leads, ideas, thoughts on what I should be looking at/trying very welcome.

Thanks all

Rolepaul · 05-25-2015, 08:43 AM

I need to ask if you can get care for the brain mets at Pasteur Institute in Paris. They are doing a clinical trial with Intrathecal Herceptin. A pouch is put in below the skin just above the hairline and Herceptin is injected into the pouch. A small tube allows the herceptin to go below the skull into the brain. There is a protocol to do this. In the States, they have a "Compassionate Care" protocol law that means you can get this done at many cancer centers if you have a protocol to use. I am working to get a general "Compassionate Care" protocol developed that can be used by patients. This law was put in place to help with delays in AIDS clinical trials, but it seems to be a way to do the same with other issues.
Ask you doctor if they use Ommaya reservoirs for Brain Cancers. Then tell them you want one for your brain lesions. Private message me and I can forward information that I have found out about.
If not, ask if they will have Xeloda and Tykerb for the chemo. Also, I would think that if the lesions are small, Stereotactic Radiation (called Gamma Knife) might stop the growth of the brain lesions. Generally they need to be under 2 cm in largest length.
I would contact Roche/Genentech Patient Advocate Services to see if they can help with the Kadcyla price. I would mention being 49 and having four children. The cost here is $96,000 for a 9 month treatment regimen, dosing once every three weeks. I am not sure how to get around the problem with your health services limitations.
Lastly, keep reading on this blog. There are a number of new areas that are being researched, including those that have significantly less side effects.