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

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

Eileen,
I am hearing that there might be some movement in that area. I just need to help push it just a little more. I think I need to get some info from MD Anderson to the doc.

I will do what I can for all out there. Still waiting to hear from a certain contact that took my email and said they will get back to me. I am going to see Nina tomorrow night. I will follow through on emails when I can.

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

Thank you all for the good wishes, we did enjoy a good anniversary, and we are confident that there are more and more to come.
Mario

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

I would like to clarify the title.
My wife had Leptomeningeal Metastases, that is, many mets on the lining of the brain, the meninges, together with one 2 cm met on this lining. This was begining of last year. However after treating with local radiation and stayed clear for about a year, this developed into many mets inside the brain tissue, 6 at least varying from 6mm to 3mm, and countless others that were just about beginning to be visible. So actually this was no longer Leptomeningeal Metastase but brain tumours. IT herceptin alone is good to treat this in Her2+ and till now (3 months from being diagnosed and started treatment with IT) we had good results. She did no more radiation and no chemo. I have read that some tried it even with triple negative and worked.
I just wish that we had done this at the beginning of the cancer, while taking adjuvent IV herceptin after the masectomy, I'm sure none of this would have happened 3 years later!! She was stage 3, so those of you being stage 3 take my advice, do some IT herceptin shots through lumbar, not just IV, if you can.
Mario

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

Apparently my post disappeared, but if I am not wrong (and often can be), IT is available anywhere that you have an Onc who does it and insurance covers it. You don't have to find a clinical trial. I have had one friend consider it locally, and one on the west coast who had it.

And, great advice about lumbar shots as opposed to IV, Mario.

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

Paul, Somehow I missed this post. I just found it. thank you!!!!! You're so thorough. I'm going to my onc on Tuesday and begging him to take a look at this procedure. Thank you so much. Thank you Paul, Mario, Carol, Nina, Brenda!! xo Eileen

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

Paul, I referred in the last response to your post about yours and Nina's story. It just didn't go under the proper posting...

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

Good luck Eileen, wish you get what you want.
Brenda, this is still not a standard procedure, so all this depends on your onc.
Mario

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

MRI of 2 weeks ago came out to be not as good as we expected. The 6 tumors that were present before stayed the same size, however there are some new small spots around the brain and so most probably this dosage of 100mg IT herceptin is not working to clear all. However doctors said that they are not certain that this means progression, it could be that this new spots are herceptin marks on the cells that were present. Now the dosage has been increased to 150mg IT herceptin together with 50mg steroid per week. My wife can tolerate this without any sde effects at all. Quality of life is still very good. We are also starting lapatinib as from next week, and then MRI is another 6 weeks or so, to check if the tumors start shrinking.

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

Hi, Mario, Thanks for the update. We're all thinking about you and your wife. The good news is that the larger tumors didn't grow. I hope the lapatinib goes well, too!! Eileen

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

Thanks Mario... as my quote said, "... it is available anywhere that you have an Onc who does it and insurance covers it." I think that is the same thing, no?

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

You are both welcome, over these couple of weeks, my wife is still stable with a very good quality of life. Hope the tykerb and herceptine are working, will scan in a month's time and update.

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

Glad things are going well. Looking forward to a positive next report!!!

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

I'm hoping and praying to hearing more postive reports! Gods blessings to you and your family!

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

IT herceptin is available in Orlando at the MD Anderson facility there, if anyone needing this lives in this area.

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

That is great news elvin!!

Thanks pray and ehower.

Will keep you updated.

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

Nina is still doing great. The bump up in Herceptin IT dosage might have something to do with it. There are two small areas that need to be followed. One is in the L2-L3 spinal nerves, but it is really hard to see. The other is on the L5 top plate, but it appeared back in the spring after a really brutal Lumbar Puncture. In the mean time, Nina has been back home since Labor day weekend and then flew out to Houston for treatment, Denver to visit her mother, back to Houston for treatment and eval, then home this past Saturday. She is walking like crazy, driving, computering, yogaing, etc. We are not out of the danger zone, but things are in a comfortable spot. A person from the mid east started her treatment regimen two weeks ago with Nina's method. So there are a few already being helped. Time to see what I can do to get more treated and healthy. Still some reluctance on deep brain treatment, but working on having more women with that issue addressed in the next few months.

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

Yoga? Fantastic! Thank for the update on Nina and I look forward to more good news...
Karen

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

Wife is still doing well, MRI this week, will see how the combination of herceptin 150 mg IT every week and IV every 3 weeks together with 1250 mg tykerb worked. We are hoping for better news, fingers crossed.
Mario

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

Glad to hear the IT treatments seem to be working for others. My daughter was infected with staph - either when the ommaya port was installed or when herceptin was instilled. Had to remove it in an emergency procedure. Found an abscess behind the ommaya. I stayed with her for eight weeks instilling antibiotics IV to get it under control.
She has since transferred to MD Anderson in Orlando whee she is getting the IT by spinal puncture. 40 mg right now, but can be raised -unlike the clinical trial. The clinical trial dose would not change. The first MRI showed clearing of the cervical area and other areas with a bit less of the cancer. The second MRI looked mostly the same with not much change seen.
The fact that she was infected and could not receive chemo for the other areas of her body - bones etc - allowed her to qualify for the pertuzamab. She said maybe the infection was a blessing in disguise.
She has remained on the Tykerb and is now back on the Herceptin plus pertuzamab also.
I am keeping my fingers crossed that this will work for her and am wishing the best for all - no matter the diagnoses or treatments scheduled for them.

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

Mario and Evlin, I am always hoping and praying for good results , Gods blessings to both of your families.