Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

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

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

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.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

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

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

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

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

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

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

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

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

My daughter is in the Chicago trial. Just had her first treatment. How long does it take to know if the medicine is working?
Thanks for any info.
Ev

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Calisa71,
I am Dr. Modi's patient. Are you treated on Fridays? (I've been there so long, so often, surely I must have seen you). You can PM me.
Karen

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

If I am not misreading this (which I could be...), I believe that intrathecal Herceptin is available at every clinic as an approved treatment, as long as your Onc is doing it and insurance covers it.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

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.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

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.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Finally very good news! Daughter was feeling better after two injections of the higher dose 60 mg, and had a couple really good days last week. Now we have found out the cytology results from last week's draw shows degenerating mastastases type cells in the sample. They draw samples each week during the treatment.

Now the doctor has scheduled 80 mg for the next treatment. He said the degenerating cells shows we are finally getting somewhere.

I am elated that he seems agreeable to upping the dose of herceptin IT to where it needs to go to get rid of the cancer cells.
She is still taking Tykerb but carefully as it does cause some stomach upset. she is also still getting the herceptin and Perjeta in the vein port.

She gets her new Ommaya next week so maybe even better perfusion and less painful sticks. Keep your fingers crossed that his Ommaya port installation and healing goes well this time. They will be installing it in the same well healed area as the one that became infected and abscessed.

This was a GOOD day! May everyone here have some good days too.

Ev

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

I have tears in my eyes. I was so frustrated with the doctor. The goal is 1.5 mg/kg of body weight. Your daughter is truly exceptional, as are you. Never give up. Hate to lose.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Thanks, Paul,

You have been a great help to many others - my daughter and myself- during this troubling time. 80 mg will be getting very close to the 1.5 mg per kg for my daugher, Susan, as she has lost so much weight and is now at about 120 lbs. I am feeling that we have won this doctor over finally and if we need to go higher he will do it for us.
I am breathing a big sigh of relief today as now she has a chance.

Ev

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

They should see improvement in the MRI scans in the next eight weeks. I would hope she is clear of lesions by mid-May. Have them make sure to give steroids if there is dizziness or nausea when they bump the dose. I let some people meeting in NY tomorrow know about this. Patients need this option and doctors need to know about this type of result. You owe me a soda when we meet. I prefer Coke Zero, no ice.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Keep up the good news. Evlin, Please PM with the doctor treating Susan as Monica Botero wants to see the center and get similar treatment.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

an extra note here- this physician may not take other patients. he is doing this cautiously in consult with other MD Anderson physicians.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

So glad for you Evlin, I am so happy for you. Once you keep pushing you get what you wish for, and sure Susan will be cured! Wish you luck with the new ommaya.
Mario

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

I thank you all those who fight the good fight. As more patients are taken care of with good results, I don't understand why they are not taking other patients. I'm one of them in need of a chance

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Monica, I sent you a private message. I think compassionate coverage will become more available soon.
More physicians will be more comfortable about doing the Herceptin IT therapy.
Some day it will probably be approved for first line treatment for brain and spinal cord mets with the Her2 diagnoses.

Ev