progression on lapatinib for us

[mkrny]

Trial appears to have failed for my Maryann. She is completing second cycle while we start planning to have IT herceptin. Local neuro-onc will administer this. Only 4 patients known worldwide to have tried this. I've seen the study from Europe on this (2 patients), the local guy has one patient on it and I don't know where the 4th is. Waiting for more info on how they are doing with it and where they were when starting.

Anyone else out there investigating IT herceptin or doing it?

[sarah]

I send you love, hope and prayers. Miracles happen. It may take a while for the drug to have its effect.
big hug and love
sarah

[Lolly]

Ken, I'm sorry to hear this news, but it sounds as if you're ready to move to the next attack. But what is IT Herceptin? Is that the protocol whereby Herceptin is administered directly into the spinal fluid in order to bypass the BBB? I've heard of this; please keep us posted on the next plan of attack so we can keep the prayers coming.

<3 Lolly

[Bev]

Saying a prayer for your Maryann. Keep us updated. This sounds like new and exciting treatment and we need to know if it works. Sorry if life has you on a roller coaster now. Best wishes. BB

[heblaj01]

Ken,
I hope that intrathecal Herceptin is going to work as well with Marryann as for the german patient previously reported in the medical press.
Here are a few of the other possible options that you may want to look into:

-RTA744 phase I clinical trial
http://72.14.207.104/search?q=cache:...n&ct=clnk&cd=1

-Boswellia Serrata
http://www.her2support.org/vbulletin...ad.php?t=25524

-Dr Keith Black: for second opinion (also other info links)http://her2support.org/a/newher2_002.htm

-current guidelines for brain mets (all types, not just br cancer)
http://www.her2support.org/vbulletin...ad.php?t=25685

[mkrny]

All,
Thanks for the words of support.

Lolly,
Yes herceptin injected into the cerebral spinal fluid (CSF) either via lumbar puncture (ouch) or Ommaya reservior (port through skull). Genetech's standard formula must be changed though. Our neuro-onc is trying to get Genetech to reformulate it and back a clinical trial for IT use or at least endorse IT use. Right now they aren't too interested. As our neuro-onc explained Genetech delivers the drug in a box with two jars, one with powder (the drug) and the other is water with something in it that will kill patient if used IT. So they open the box and throw out the water and reformulate it at their pharmacy using the receipe from the European study.

Maybe Joe can work on them Genetech his side.

heblaj01,
Thanks for the references,
1- I'll discuss the RTA744 trial w/ oncs, I haven't seen that before
2- I've discussed the Boswellia Serrata with our neuro-onc (he came from Sloan but didn't work w/ it there so he didn't have too much to say about it). I'll need to look into that more.
3- Unfortunately the current guidelines for brain mets doesn't cover leptomenengeal decease.

Thanks again,

[aviv]

dear mkrny,

I'm also looking at IT Herceptin- it looks pretty far from where I'm standing now, but it may be an option for us - pls, share us with anything you'll find.

thanks!

[aviv]

I also wanted to ask you all about IT Herceptin-
My mom has 8 brain lesion (~1.5cm) - probably more, since we ran CAT scan, rather than MRI.
Some of them are deep in the brain (frontal, perietal, temporal and occipital areas).
Is there any knowledge if IT Herceptin would fit that condition- would it reach these deep mets- or, would it only work for the areas nearby the intrathecal fluid, and the mets that are on the surface of the brain?
Also, I've checked around here- as expected, no one is conducting trials/treatments on IT Herceptin around.
I tried to get Dr Stemmler (the one who ran this trial), got no response thus far-
Has anyone found a place other than Germany that runs these treatments?

Thanks!!!

[mkrny]

From what I see any work w/ IT herceptin is pre-trial. Very experimental at this point w/ unknown end results from a statistical perspective (4 patients isn't enough for oncs to hang their hat on performance).

We have a neuro-onc on Long Island in NY (Dr Demopoulos) that is giving it to one patient currently and my Maryann is likely to be his second patient on it. I can provide contact info if desired.

Is radio surgery (e.g. Gamma-knife, Cyberknife, ...) an option to attack the multiple brain met spots you mom has?

[aviv]

mkrny: she had already gone through WBR on May.
Our radiology doc carefully checked her images from the past few months (CTs, MRI), and concluded that since the lesions are growing fast, it's useless to try stereotactic radiation- since while concetrating radiation on individual tumors, others would rapidly grow, and eventually she'll get the same amount of radiation as if she would in the case of repetitive WBR- so he suggests only second WBR.
I fear from additional WBR, as it may severly affect her- so as long as she can bear the pain with steroids, we'll postpone the second WBR.

Please, do forward the contact of Dr Demopoulos.

[mkrny]

Here's his contact info:

Dr Alexis Demopoulos
Director, Neuro-Oncology
North Shore/LIJ - North Shore University Hospital
300 Community Dr
Manhasset, NY 11030
516.562.3065

Our prayers are with you,