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

Yes we were in NY till 3 months ago but had to travel back to Europe to get the treatment done at our homeland, by our oncologist here, since I could not find anywhere in the states except the chicago trial, and this was taking time. Thanks for the good wishes. I think Paul can help you out to be another antecdotal. Just get in touch. Good luck Eileen and don't give up, fight for IT till you get IT. As far as I know, all that tried IT got cured.
Mario

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

Eileen,
I'm in PA too. I've heard rumblings that there may be a trial site in Pittsburgh opening up in Aug. Boy, I hope that's true! Pittsburgh would be VERY do-able for me...I have family near there.

I'm due to have gammaknife on Aug 10th...then I'll go from there.

Best of everything to you! and Nina and Carol too, of course!
Denise

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

Thanks denise for the wishes to Carol and Nina, and for the wonderful news of this trial. Wish you a quick recovery.
Mario

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

Searching clinicaltrials.gov with intrathecal and trastuzumab as search key provided this as the only link to stateside trial.
Don't know how much "anecdotal" data from this evaluation has been published, if any, I hope that it was all positive.
Details of trial and contact particulars can be found at:
http://www.clinicaltrials.gov/ct2/sh...tuzumab&rank=1

Hope this little bit of info was helpful.

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

Those are the two trails going on at the moment since last year, one in Chicago and the other in France. A lot of talking is going on at the moment that new trials are going to start soon, but still there is nothing new listed in the trials sites. Thanks schoonder
Mario

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

Thanks, Denise!!!! I wish you the very best. xo Eileen I'll let you know what happens with me!

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

Thanks, Mario. You're giving me a reason to hold on....

Eileen

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

So glad to hear the good news. May it always be so.
Karen

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

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

That website is not very comforting. I read it a few hours after we found out about the disease going from the brain to the spinal nerves. All it did was inspire me. Based on that work, both Carol and Nina should have given up. Neither did. Things are moving faster than many of our knowledge leaders can keep up with. I do not agree with the articles assessment, but respect the author's interpretation of the most frequent result.

You can stay in the box, go out side the box, or stand on the box so your voice carries louder. Guess which I am?

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

I agree. I was very depressed after I read this article....

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

Paul- or anybody out there.... My cancer has spread to the 6th cranial nerve which controls vision. I now have severe double vision and am cross-eyed. Very difficult to handle emotionally. I am going through radiation to try to stop the progression but it's not repairing the double vision. I have talked to my doctors about intrathecal herceptin but have gotten nowhere. I know I can't travel to France or IL to get the treatment. I'm going to try one last time with my oncologist on Thursday to see if he can contact the doctor at MD Anderson. I've fared through this whole cancer ordeal so well, but this has really got the better of me. Thanks for your encouragement. I need it so much...

Blessings,

Eileen

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

Eileen, My heart goes out to you. I am hopeing and praying all will go well for you. I don't know your whole story but if this helps the have been lists recently that here of people who will supply you with airfare and hotels to get you where you need to be to get the help you need. Gods blessings to you and your family, you are quite the fighter! Hope springs eternal!

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

Eileen,
I'm so sorry to hear about your vision. One of my lesions is in the "vision center" of my brain too...and I'm dreading the side effects that may ensue.

If you don't mind my asking...where are you being treated currently? If you'd rather not post publicly, PM me. I'm wondering if you might not be near enough to one of our major cancer centers in PA to get a consult. Heck, depending on where you live in this great big state...you might even be closer to one of the other "majors" in a neighboring state.

Loyalty and trust are important...but sometimes that second opinion is the one that makes the difference. In our current situation...time is definitely of the essence! Wait and see? ...that's not an option.

Praying for you, and sending love through cyber space!
Denise

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

I am trying to help Eileen, Denise, and Ashley. This is getting frustrating. Is it time to get some push in the media? I made a first inquiry, now I need to move it up to the next level. How about getting some push from the group here with your DC politicians to get some movement? The doctors want to do it, the patients need it, but the paperwork to do it is tremendous. MD Anderson wants to get a multi-center study going, so I am going to be there on Friday to do the necessary part from the patient's side to get this going. I have a VP at Genentech/Roche that I might need the help of this group to put some pressure on. I will give him one more chance to do the right thing, then we group up or move it up a rung. Genentech/Roche made a lot of positive points with Pertuzumab approval, lets give them a shot to do the same with this approved drug and an approved method. I have to see what it takes to move this from "Compassionate Care, off label use" to "New indication". I still have a contact or two that I have not used yet. I heard Ashley in Nashville got approval. Time to lawyer on a few more doctors. The time to do IT Herceptin is now, not two to five years from now.

Ants can get elephants to move. This just have to act together. Lets be Ants.
Never give up.
I hate to lose.

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

Hi, Denise,

I'm in Bloomsburg, PA and being treated at Geisinger Medical Ctr. I like everybody there very much, but I'm feeling like my situation (with leptomenegeal disease, double vision, etc.) is impelling me to look toward IT Herceptin. Paul, you're an honest-to-goodness go-getter, and I can't thank you enough for all your work and dedication. Thank you.
Eileen

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

Hey Paul, I don't know how to thank u enough!!
Denise, Ashley and Eileen, I did dedicate 3 weeks full time 24/7 running around, asking everyone to help me. At first I found all doors closed, but with a good fighting spirit I finished up able to do IT herceptin in 3 places, Chicago, France and my homeland, while my wife was still in NY. It was a hard 3 weeks, and every day I felt stronger. And with Paul's help I would have had MD Anderson soon. If I didn't succeed I would have tried California too. But then we choose our homeland and immediately started in a few days the first procedure. If you want IT I'm sure you can get it and if you don't find in the states you have to find anywhere in this universe. After all you have a right to get it once it is there and it is curing people. So be strong. Wish you all a very quick recovery.
Thanks Karen for the good wishes and for your help, Brenda and Denise
Mario

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

Mario,
Drink a toast of champagne for me with Carol. Happy Anniversary! The next ones will be even sweeter. Here's to good MRI scans for Carol next week.

I will do any magic I can to help, particularly with HER+ brain mets. I do not like being told no, and neither did Mario. Save your life or help a family member save theirs by investigating, making a choice on treatment, and going forward. I am backing Intrathecal Herceptin for Brain/LMD/Spinal nerve mets until a better choice comes along.

I think I am getting on the back of the dragon in South San Francisco. They are trying to see who I am through some of their contacts, but none of those who know me are saying anything. Let's see if I can get in the saddle and steer the dragon the way I want. I will let you know more soon.
Paul

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

RIDE 'EM cowboy Paul!!!

Let us know what we can do as a group.

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

Paul,
I'm with Steph and Eileen...THANK YOU for all you're doing! And please...if there's something we can do, as a group, or even as individuals...I know I'm on board, and I bet a lot of our friends here would be willing to help too.

Eileen,
Geisinger has a good rep. I know at least one of the docs who treated my mom, at Fox Chase, is there now. But sadly...it's not where the IT Herceptin trials are...so it sucks either way.

Happy Anniversary Mario and Carol! And many, many more!

Denise