PDA

View Full Version : IT Herceptin In Europe


Freakzilla
04-07-2016, 09:25 AM
Had First Brain MRI since Surgery and Conformal Radiotherapy. The resection cavity looks fine.

The bad news is there is a tumor on the meninges. It's only 2mm big. There are two other tumors. They are 2mmm and 6.7mm.

The Onc spoke to the specialist about Gamma Knife and he didn't recommend it. They said it would probably work now, then come back on a different place on the Meniges later. I am seeking a second opinion on this as I feel deal with what is here now and if something turns up deal with it then.

The onc wants to start perjeta, herceptin and docetaxel now. I can't see how this will work. As none of them reach the brain. They said after surgery and radiotherapy it can break the Blood Brain Barrier down. They said they have had patients with systemic and brain mets before and it has reached the brain.

They have never had anyone in my wifes situation. IT Herceptin isn't available in the UK, I've asked them to look into it and given them info from RolePaul.
The Onc's said they want to hold back WBRT until if it is needed.

We are based in England and nowhere here does IT Herceptin. I know France is trialling it now, but not sure if we'll be able to get on the trial.

Does anyone know any places in Europe that do IT Herceptin?

Thanks

Becky
04-07-2016, 01:29 PM
Tykerb is a small molecule that crosses the blood brain barrier. The chemos Xeloda and Temodor cross too.

tricia keegan
04-07-2016, 01:35 PM
I don't know of anywhere myself but while looking into it I came across this story from someone who did have it, if you scroll to the final paragraph he mentions it, perhaps if you contact them they may have more info for you on this. Sending good wishes. http://www.brainmetsbc.org/en/content/magic-happened-husband-tells-story-his-wife-s-success-treatment-her2-leptomeningeal-and-brai

Freakzilla
04-07-2016, 02:41 PM
Thanks, I've already contacted him today, and hope to get a reply. Thanks for looking.

Freakzilla
04-07-2016, 02:43 PM
Thanks Becky, That's the combination I wanted. It's not available on the NHS in the UK any more. If I paid for it privately, then we'd never be able to use Perjeta.

Although, if this doesn't work, It could be the only option.

SoCalGal
04-08-2016, 12:10 AM
Can you get treated in US, compassionate use? Forgive my ignorance. It's incredible that they aren't able to do IT herceptin and won't pay for you to go elsewhere and get it. Tykerb is relatively cheap now - why would it negate your use of Perjeta? Maybe you don't tell - just try with herceptin? I'm very sorry you are going they this. I wish I was more helpful.

agness
04-11-2016, 07:03 PM
Intrathecal Trastuzumab Halts Progression of CNS Metastases in Breast Cancer
http://m.jco.ascopubs.org/content/early/2014/12/29/JCO.2012.44.8894.full

See the author info

KathyT
05-06-2016, 09:36 AM
SoCalGirls,
You are an inspiration!! I was just diagnosed with mets to the pituitary gland. Having pet scan today, praying for no further mets. Will do Gamma Knife and pray that it will only take one miracle zap as well:)