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

Mario, Let us know the MRI results. I'll be thinking of you and your wife. I'm sending along my best wishes for only good results.

Elvin, I'm glad things are looking up for you daughter and hope that trend continues.

Eileen

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

Thanks all of you MRI is tomorrow, will post here
Elvin, my wife also got an infection through the lumbar puncture and had very high fever and was hospitalized for a week to get intravenous antibiotic and emergency meningitis treatment, but she responded very well and fever got down in a couple of days.
For tomorrow,
Mario

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

MRI results of my wife:
Most of the mets are gone only a few left, even those that were deep brain ones.
An edema is still visible with same contrast but swelled slightly.

Seems we are getting somewhere at last!! Thank god.

Mario

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

Wonderful! Great news.

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

SO HAPPY to hear your news- may it continue. hang in there!!

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

How wonderful for you both! Gods blessings to you both!

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

Thanks to all
Mario

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

My thoughts are with you and Carol. I hope you have similar results to us. Nina is still getting lots of chemo, but with the overwhelmingly good results we are hoping to get to once per month on IV and IT. Seven months since anything confirmed as disease in either the brain or spine, although there were scares in August and September. Mario, we are hoping for the success Nina has had. Keep posting and all the good feelings from this site will carry Carol along.

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

Thanks Paul. Looks like we are closing in too.
Regards
Mario

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

Doctor asked to start Xeloda too!! Is there any issue that anyone knows of when taking Xeloda with Herceptin?
Carol still doing fine but it is taking a bit long to clear the brain completely from cancer cells, and this is the reason why Xeloda, Tykerb, IT IV herceptin are being considered.
In last MRI most of the tumors were gone but the edema that is left at an outskirts part of the brain is worrying. At least this is not deep brain like the ones that are now cleared.
Wish us luck.
Next MRI in a month's time, will keep you updated,

Mario

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

My daughter took xeloda with herceptin and tykerb after brain surgery followed by WBR several years ago. There was no negative interaction in her case. The xeloda did not seem to do anything for her and was discontinued.

At this time she is getting the IT therapy with herceptin 40 and topotecan weekly- and also IV therapy with herceptin and perjeta every three weeks. She continues taking the tykerb.

The cervical area of the spine mets has resolved . The other spine mets are stable- basically no change There is a questionable spot on the brain yet. The next MRI is in two weeks.

She started out in Chicago in August with just the low dose of 10 twice a week on the Herceptin IT. She has been on the 40 for a couple months. We are trying to persuade the doctor to up the dose of IT Herceptin. He will decide what to change after the next MRI.

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

Thanks Elvin for this information. Wish your daughter gets quick recovery.

My wife (220 lbs) is now taking:
IT herceptin 150 mg, IT steroid 50mg, once every week (since 6 months ago).
4000 mg Xeloda (starting now) and 1250 mg Tykerb (since 3 months ago) every day
4 mg steroid orally every day
IV herceptin 600 mg every three weeks (since 2 years ago when one 2cm met was found for the first time and was locally irradiated).
She is not showing any progression and most of the contrast areas in previous MRIs are gone, even deep brain mets. Only an edema which was present in all previous MRIs seemed slightly swelled, and this is the main problem left.

Will update after next MRI in a month's time.

Mario

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

Mario,
Xeloda can cause her hands and feet to have skin issues. Look at Monique Doyle Spencer using Henna for Hand foot syndrome. Also Vitamin K cream on the hands. Nina did Udder Cream and Bag Balm, one of those during the day and one at night because she did not want the yellow hands from the Henna. But she yellow footed so she could walk without pain. Henna is Clinical trials for this, but Vitamin K cream worked almost as well.

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

Thanks Paul, you are always a great help!

Mario

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

MRI of this week:

Edema is less than half it was two month ago.
All tumors gone except for 3 small ones now measure 4mm or less. These were around 6 to 7 mm 4 months ago.
All the tumors that were gone in the MRI of two months ago did not show up again in this new MRI.
Looks like we are getting very close to clear all the brain from this metastatic cancer. Maybe with next MRI end of next February, fingers crossed.

Mario

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

That is great news Mario! Very happy for you and your wife !!!

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

Mario,
Sounds great. I hope the steroids are keeping down the side effects. Nina is doing excellent and we might be getting some traction on getting others treated. I am working on how to get contact with some people to get funding for 200 patients. Nina and I were invited to meet with the president of a major pharmaceutical equipment supplier to tell our story for the first time in public. I am trying to see what my new company will let me do. Boulder Colorado is the new location to be with Nina's parents and other family members. We lived on the other side of Denver previously, so it is good to go back home. Nina is sore in the legs, possibly from nerve damage, so she gets a massage from me every day. It is very helpful to her and I like the feeling of her skin on my hands.
Christmas was special. She was not supposed to be alive, so it was truely wonderful to be in Colorado. I had called a company and they made a job offer that will work. It also might let be more outspoken than my current company.
Merry Christmas to you and Carol and a Happy New Year. A year from now you will both be celebrating as we did.
Paul

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

Thanks to both of you, yanyan and Paul
Great to hear the good news of Nina, wish you luck.
Happy new year to all of you.
Mario

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

Hi Ev ! I hope the loaded dosage will do the trick! You are such a wonderful mom! My mom flew all the way form china and is staying with me again for 5 months to take care of me! I just wish I dont have to put her thru this. Many times our care givers or close ones suffer more than us the patients emotionally. I can't imagine if my daughter ever had to deal with this. Hopefully they will soon find a cure for cancer. Blessings to the ones that support us with all their love!!

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

Anyone on this? It opened last April - at Northwestern, Chicago.

Prot# H4320//NU 10C03: Phase I/II Dose Escalation Trial to Assess Safety of Intrathecal Trastuzumab for the Treatment of Leptomeningeal Metastases in HER2 Positive Breast Cancer

Hugh Anderson; Mary Cianfrocca; William Gradishar; Sean Grimm; Virginia Georgia Kaklamani; Jeffrey Raizer
4/22/2011 - 4/22/2014

Sponsoring Organization:Genentech, Inc.