Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

[marvass]

We are doing it and rolepaul is doing it too.
Chicago are recruiting now, 10mg twice a week.
France trial are recruiting now 30mg per week.
But maybe you can get a better trial through your oncologist if you convince him. If you need more details message me or rolepaul who is more of an expert. Good luck

[Rolepaul]

Lani,

So the clinical trial shows an overall survival of 3.8 months on average. That is unacceptable! Intrathecal Herceptin has been shown to eliminate the detectable presence of Leptomeningeal disease in almost every case that has been noted in literature or on the internet if at least 50 mg per week is used. I was contacted by one gentleman whose wife died, but of liver or pancreatic cancer a few months after treatment. Most of the other patients are still alive, or passed away from other causes years after the treatment. It took four solid days of work to get all the information about this treatment method for Nina and getting treatment started was extremely difficult due to politics of not having the number of cases out there to make the doctors comfortable initially.

Dr. Raizer is struggling to get women for treatment. That is what is even more frustrating. The studies at Northwestern and in France are not well advertised, without the completion of the trial there is no documentation of positive results, without positive results there is no knowledge in the community or health industry to inform doctors and patients. Dr. Razier's study is to determine the amount of Intrathecal Herceptin that is tolerable. There are already 12 patients that have 50 mg or more per week. I would have thought that it would have been higher dosages than the 10 mg twice weekly or 20 mg twice weekly lower dosages.

Nina is already down to once per two week treatment with NED in the brain, spine, or anywhere else, Mario's wife has already started treatment, Lisa looks like she should get her treatment started within ten days, and there are other contacts I am working with to get this done through compassionate care if they can't get into the Northwestern trial. If there are the numbers of patients with Lepto disease as it sounds like, there are too many for this trial. There is talk of MD Anderson personnel getting a large scale trial started, but the provider of Herceptin, Genentech, has some reservations about providing funding for a large study. They need to have some "push" to get this concept going. I am pushing NCI, NIH, ACS, Susan B Komen, and anybody else I can to get some help for a trial.

Let me know what we need to do from your thoughts.

Mario's wife Carol is now at 50 mg per weekly dose. MRIs in three weeks to show progress. I feel like I am a one man army, but getting recruits as people find out about how to fight this war on Lepto involvemenr with HER+.

[dchips1]

my 6 week thoracic mri after 20 rounds of rads, showed slight reduction to my lesions. hurry up and wait for 7 more weeks for next Mri. Still on Tykerb 750mg and weekly Herceptin, tumor markers are good. i have never had any CSF samples for cells? These 2 different lesions are pretty much inoperable.It is kinda crazy that her2 + can wiggle around inside the spinal cord so crazy.

Very interested in possible treatment using Intrathecal herceptin if the radiation doesn't kill it all the way to NED!!

Barrows neurosurgeon will place omaya, but not to sure about the Herceptin use? is it the same Herceptin vials that you get IV, but use different diluent?

Can you still wear an ATV Helmet with the omaya reservoir in place? My anniversay present

Prayers and Love To all Of our warriors and Cargivers

Darita
Arizona

[Rolepaul]

Ommaya does not need any other protection than you normally do. They put the Ommaya into the head and it is just like a vaccine when they give the treatment. It is the same Herceptin as used via IV. They use 5 mls of sterile saline or water for injection to dissolve the amount of material targeted. Please contact me via private message and I will give you the contact information at MD Anderson and they will take your doctor's call to let you know what was done for Nina. All I want to tell you is that this will take a compassionate care protocol at the hospital there. I will do everything I can to help you.

Paul

[calisa71]

I am in touch with Shanu modi at msk. Sent her some info from md Anderson. If Shanu and Amal could speak that could help. I am a established pt with mskcc.
Lisa

Shanu Modis email is modis@ mskcc.org.
646-888-5243

[Rolepaul]

By the way, yes you can still wear an ATV helmet. I did not read that carefully. You probably need to give it a few days to heal up from surgery, maybe cut just a bit of padding if there is any interference, but I think you should be okay.

Please contact Dr. Raizer at Northwestern on how he is formulating the Herceptin if you cannot get in touch with MD Anderson. See me a Private Message for contact information for me, MD Anderson, and Dr. Raizer.

[dchips1]

pertuzumub has the same molecular weight as herceptin, would be interesting if we could add or use this in altering treatments with herceptin intrathecal therapy?

Darita

[calisa71]

Darita. Is the cancer in your csf or just spine(bone)?

[dchips1]

Both of the lesions are inside the spinal canal and sitting on a nerve or two. In the thoracic area t3-4 and t-8. I have had 20 rounds of radiation to both the areas.

Darita

[Rolepaul]

The is a likelihood that she will have nausea and vomiting with the first treatment. That would be the best indicator it is working as it means the cancer cells have been destroyed. First MRI from now will show it is working otherwise. What was the dose? Please post what happens.

[evlin75]

My daughter is receiving 10 mg two times a week for the first month in the Chicago trial. She is getting herceptin only IT- no other additive. She also gets Herceptin IV - along with Tykerb that she has been on prior.

[evlin75]

Susan had a few uncomfortable days after her last treatments - some vomiting.

She had the IV treatment of herceptin and perjeta and then the next day the intrathecal treatment of herceptin and toptecan. She needs to separate the treatments in the future and NOT do them back to back.

The cardiologist cleared her completely by EKG and ultrasound. Said she had a healthy heart. That is very good news all around as she can now have the ommaya replaced and it also indicates the Herceptin in the larger doses is not harming her heart.

Her doctor gave her the 80 mg today. That is the dose recommended according to the 1.5 mg per kg of body weight. She sees the neurosurgeon again tomorrow to begin again the process of setting up the ommaya surgery replacement. The cardiologist expressed shock that they canceled the former surgery scheduled since he found no problems.

I am relieved. Her next MRI is next Tuesday.

Ev

[evlin75]

To Rolepaul:
What is the highest herceptin mg IT being given at the Houston MD Anderson? If our physician does not feel comfortable about going higher we would like another avenue if Susan needs it.

Ev

[evlin75]

I certainly wish much success to all who are doing the IT treatment for spine mets, but my daughter is having a very rough time right now.
She finally got up to 80 mg the last treatment before the new ommaya was placed, but the subsequent MRI showed progression all along the spine. Several spots in the cerebellum, a more prominent area in the thorax and more also in the lumbar region. He changed her treatment to a more toxic chemo Lysomomal Tycaribine (sp). He is concerned that it is getting out of control. He wanted to discontinue the herceptin as it cannot be mixed wth the new medication. I did not agree with stopping the Herceptin so she will get it on alternate weeks. Because this is a more toxic medication, she receives steroids before and after the treatment.
She gets the stitches out of her ommaya site Monday. Tuesday she will be admitted to the hospital for the flouroscopy and the areas in her spine that are grossly enlarged will be radiated. She will also receive her herceptin that day.
I am told she will have to stay overnight for observation. We were so hopeful for the Herceptin but maybe the lumbar punctures were not getting it all into the right area as some were very painful. It is good they can use the ommaya now though.

Ev

[dchips1]

Prayers headed your way Darita