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-   -   Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases) (https://her2support.org/vbulletin/showthread.php?t=54229)

marvass 05-02-2012 10:44 PM

Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases)
 
I have been searching this site amongst many others, for clinics that do Intrathecal Herceptin for Leptomeningeal Metastases in HER2+ Breast Cancer.

Till now I got information that there are two trials going on and recruiting at the moment.

http://clinicaltrials.gov/ct2/show/N...tuzumab&rank=1

http://clinicaltrials.gov/ct2/show?t...tuzumab&rank=2

Also found out that two persons have been treated in LA and TX.

Are there any more doing it?


Mario

Jackie07 05-03-2012 12:22 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Hi Mario,

Welcome to Her2 support.

Below are two recent threads of previous discussions on the subject. More can be found by using the 'Search' fuction on top of the Board.

http://her2support.org/vbulletin/showthread.php?p=269040&highlight=leptomeningeal+m etastasis#post269040

http://her2support.org/vbulletin/showthread.php?t=50175&highlight=intrathecal

marvass 05-03-2012 12:49 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Hi Jackie,

Many thanks for your help.
I had not seen greg's information on this but seen Lani's.
Have just learnt that doctors are doing this IT Herceptin at MD Anderson, Cedar Sinai and UCLA, not as trials.

Still looking for someone closer to us, NY.

Thanks again
Mario

marvass 05-03-2012 10:25 PM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
From what I learned in the last days that IT herceptin is working fine with most of who tried it. It kills brain mets HER2+ Breast Cancer, and its only a matter of a few months before this would be the first option for all that herceptin worked on them intravenous, and then spread only to their brain, because of the BBB. There are a few doing it right now besides the two trials, but still no one around NY !! Can't believe it, I'm sure there are... Let's hope I find out someone.

marvass 05-05-2012 01:23 PM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Got to know that in small dose, less than 50 mg it does not work.
At chicago trial the dose is low while in off protocol they are giving 100 mg or so and it is curing most of those trying it.
There are three papers talking about IT herceptin and they both conclude that it was successful. Simply cannot understand why not much are doing it.

Rolepaul 05-13-2012 11:02 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Mario,

This is very frustrating for me as well! Did Carol end up getting treated in France? I am going to MD Anderson on 5/16 and can see if Carol would be able to get treated there.
Paul

marvass 05-13-2012 12:41 PM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Hi Paul,
Still working to get somewhere, chicago still doing 10mg per week and then 10 mg every two weeks, think it does not do much.
France and MD Anderson still chasing, nothing at hand yet.
If you meet your doctor ask her if she is taking more for she gave us no reply in 10 days !! Even though the secretary promised a reply, because she was away all the time.

Regards
Mario

Rolepaul 05-13-2012 01:31 PM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Mario,

I sent some contacts at Genentech and NCI to you. I will follow up with MD Anderson people on Thursdya or Friday of this week.

Paul

marvass 06-10-2012 08:06 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
After all we got accepted both in france and chicago trial, but never went, because our oncologist decided that he will do it for us, because he believed that this was the best available.


My wife started 18 days ago on IT herceptin. Already took 30mg first week, then 30mg second week, and 50mg two days ago. No side effects except for a headache peaking two days after administration, which can be controlled through pain killers and light dose of steroids.


It looks like it is working because she already feels much much better. Well, we believe strongly that this is the best available treatment for breast cancer mets in the brain when you are HER2+.



Will keep you updated with next MRI in less than a month.


Mario

marvass 06-23-2012 02:38 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Here's an update:

Till now my wife took 30, 30, 50, 50 and 60 mg intrathecal herceptin together with some steroid, one dose every week, escalating this way, and 6 mg per kilo intravenous herceptin, one dose every three weeks. Side effects are none, not even a headache anymore. MRI will be done next week, will post results here. Fingers crossed.


Mario

JennyB 06-23-2012 05:10 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Fingers crossed

karen z 06-23-2012 05:58 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
thanks for your post.

Rolepaul 06-23-2012 09:44 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
I am staying touch with Mario as Carol, his wife, has a treatment method that is so monumental in how it is being done. This uses a method that should be able to be implemented very easily with existing methods and drugs. To be able to save potentially thousands of women a year with brain and/or spine HER+ involvement needs to be pushed by everyone who reads this forum.

schoonder 06-23-2012 11:02 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Would neo-adjuvant t-dm1 after surgery reduce possibility of brain mets if treatment was effective in eradicating remnants of disease that are currently undetectable?

Would intrathecal t-dm1 make for an effective tool in treating her2+ brain mets?

Rolepaul 06-23-2012 11:23 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
No one to my knowledge has ever done TDM-1 via intrathecal administration means. If there is no brain or spine mets detected within seven years after mastectomy, there is a high level of faith that there will not be found later. The problem is that these is no absolute way to make sure that there is not any involvement in the brain and spine prior to that. If there is no lymph node involvement, that would indicate that there is also a low likelihood of brain or spine involvement. The difference between now and the past is that it is clear that the previous methatrexate and other "harsh" chemical treatments caused side effects that were unacceptable, with IT Herceptin now being tested by several individuals for side effects (and finding none).

KDR 06-23-2012 02:09 PM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
How does this work exactly? What is the set-up? IV to the head or what?

Karen

Rolepaul 06-23-2012 06:49 PM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Intrathecal can be done through a lumbar puncture hole, but is more commonly done through an Ommaya reservoir. This is a small under the skin plastic bag (think mini IV bag) with a septum to add the medications and a tube that allows the solution to go through a hole drilled in the skull to the brain cavity. Past issues with irritation of the brain lining from the tube or medication are better understood and not as much a problem. The medications are then added through the skin with a needle the size of a vaccination, with little pain or risk of infection. The medication volume is offeset by first removing an equivalent amount of fluid from the reservoir, which than can be used to flush the solution in the line at the end of medication addition or sent to the lab for study of the CSF for blood cells, glucose (high is good), protein (low is good), or tumor markers (undetectable is great). This is on the side of the blood brain barrier that most testing cannot see. That is why it is such a great tool if brain or spine involvement occurs.

marvass 06-24-2012 02:26 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Thanks everyone for wishes and interest.
We are doing this through lumbar puncture, which is just an injection through the lower back with little pain and takes just a few minutes a week. Then just a little dose of steroids, 2mg pill per day and that's it. Within a few weeks. then the time period is extended, I know of one doing it every 6 weeks and another planning to go for once every 3 months. When all is clear then I think that it must be done for a year or two and then stop completely. But this is still experimental. But I don't think there is anything more effective. Lets see the outcome of the results in 2 days!!

Joan M 06-24-2012 08:16 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Good luck, Marvass. I'm going to ask my neuro-onc about the procedure. When I first had a brain met in Oct 2008 I asked my former neuro-onc (who was at the same institution as my current one, but has since left), and he had never heard of it. I was a little surprised because it was at Sloan-Kettering. I was prompted to ask him, because I had read about a trial in Germany about intrathecal herceptin. That was the only information I could find about the procedure at that time. I wonder what the new neuro-onc will say.

I was treated with Herceptin at Sloan-Kettering for only about a year or so, but switched to another hospital a little over a year ago. However, I've had other services there and continue to follow up with them.

Joan

marvass 06-24-2012 10:21 AM

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 
Thanks Joan, I don't think sloan-kettering did it ever, but they might do it in collaboration with the trial in chicago, worth giving it a try.
Good luck to you too.
Mario


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