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.

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

Hi Evlin
I am no expert on these chemicals, all I know that 90mg seemed to stop the cancer grow but did little to cure it, with 150mg we are seeing very fast removal of these tumors, and 150mg were perfectly tolerated by my wife, so there should be no problem by escalting the dose slowly, even above 100mg. Wish you luck
Mario

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

Due to the atypical cells showing in the spinal fluid, the doctor set up the treatment for Herceptin IT 60 mg. instead of the 50 mg he had originally agreed was a next step. Not completely theraputic mg per kg for my daughter but a step forward to getting there.

She tried adding Tykerb back into the mix but had N/V so had to go back on her nausea medication. Stopped the Tykerb again.

She is scheduled to get the Ommaya replaced in a week or so. Hopefully that will aid the profusion to more areas of the meninges.

So far this has been an "uphill and against the wind" battle but we are keeping hope alive.

Ev

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

This is a long thread, and I'm not sure whether anybody has realized that Sloan-Kettering is also conducting such a trial:

http://www.mskcc.org/cancer-care/trial/12-123

Joan

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

I looked up the protocol at Sloan Kettering and it seems quite in line with the Chicago trial my daughter Susan was in for a short time.
Some get higher doses than others but go only to 40 mg.
The routine is usually 10 mg twice week for the first month.
The dose not large enough to work for my daughter even at 40, so she is being given 60. Higher doses seem to be needed to clear the meninges.

Thanks for the info. Getting clinical trials started though is progress.
Ev

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

Yes, Sloan is part of the Chicago trial, on same principles. You can view here.

http://clinicaltrials.gov/show/NCT01325207

Twice a week at 40mg is equivalent to 80mg a week, so it is not such a low dose. My wife is still doing 150mg IT herceptin and 50mg IT steroid a week through lumbar puncture, with no side effects at all.

Wish you luck Evlin.

Mario

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

Some were started at the lower dose without any hope of that dose escalating. My daughter was selected to stay on the lower dose and continuing that dose throughtout. That is the main reason we sought out another source to allow excalation of the dose.

This is a very diffucult business as we know the timetable for Leptomenigeal cancer is short if the dose is not adequate.

We are bit discouraged right now since the last two spinal cytology showed atypical cells again. A lot of treatments, MRIs and traveling to appointments taking up most of her life without mesurable change and improvement in the MRI views of the cancer cells in the spinal cord.

It is a great positive though that the physician has finally gone to 60 mg.

We need some good news right now though, and signs of some reduction of the cancer cells.

Ev

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

Ev,
Keep pushing for Susan. I talked to her on the phone in July and was told that things were going downhill quick. Keep talking to doctors. The dose that seems to be effective is 1.5 mg/kg of body weight (ie 150 mg for 100 kg or 220 pounds in Malta for Carol, 90-100 mg for Nina at 63 kg or 139 pounds), etc. The lower dosage may be why other patients only put the disease into hold. There is good evidence that it works even on lesions that are up to 4 cm below the surface of the brain, although the response time is up to 60 days. Keep on fighting for Susan. I am getting settled in Boulder and have started the new job. With a little more travel away from home, this forum will get my attention a little bit more. Nina is seeing her mother every day as we are staying there until we close on our new house. Last January and February we struggled to get to these levels, but by April things had turned around. Keep kicking them in the shin. If nothing elsee, give me their contact info and I have bigger shoes than you!
From a happy and healthy Nina and Paul the driver

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

From our MRIs at 50mg IT herceptin we already saw that the cancer did not grow more, for 220 lbs mass, so in your case I think that with 60mg you should see shrinkage. But if you can get more without any side effects I think that you should keep pushing once you settle at 60mg, I am sure the doctor will agree to try 70 or 80, if there are no side effects at 60. Wish you luck Evlin.

Mario

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

I have been watching the stories on these threads on IT Herceptin and have to say I think you are all so brave and thanks for being out there for all of us who might need this type of treatment in the future.


Karen
Treatment: Memorial Sloan Kettering Cancer Center (NYC);
World Trade Center Survivor (56th Floor/North Tower);
Dxd: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Discontinue Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
June-October 2011: CEA in normal range. PET/CT stable; no new lesions.
November 2011: Progression in liver. Previous tumors remain eradicated.
December 2011: Begin trial: 09-093 Taxol, MCC-DM1 (T-DM1), Perjeta. Brain MRI: clear.
January 2012: NED. Liver mets eradicated.
March 2012: NED. Taxol removed from regimen. Continue Protocol of T-DM1 and Perjeta alone.
May 2012: NED.
June 2012: Brain MRI: clear.
June 2012: NED.
August 2012: NED.
September 2012: NED.
October 2012: NED.
November 2012: NED.
December 2012: 09-093 trial concluded; enter trial extension 09-037. CT, Brain MRI, bone scan: clear.
January 2013: NED. Forever, please.

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

Thanks Karen for your continuous support, surely we are trying a treatment that will cure thousands in the future, especially those that had their lymph nodes tested positive on detection of the first breast cancer. But we are not the pioneers. I did follow some that did it years ago and got to know this from Courtney L., who did it two years ago, and worked on her too to clear her brain from tumors, sadly she had other places with tumors. I am so grateful for her. Nowadays it is not that difficult to find a way to do it, since now it is available in many places, even at Sloan Kettering in NY.

Mario

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

We agree with Mario. The people that are getting treated now owe their lives to Courtney, a woman in Germany, a UCLA patient who is four years into good health, to a woman in Japan, to two women in Eastern Europe, and to those that have gone to Chicago and Sloan Kettering. The cases are out there, and some of them are very scary. There is no way to know the fear that they had. There is also no way to thank them for overcoming that fear and taking the risk. We firmly believe that Nina is alive because I could access their information and make some judgement calls. We cannot thank MD Anderson enough for allowing the treatment to occur. We cannot thank Anthem BCBS enough for the coverage they have given us, and the support to take the stress off our minds in terms of financial impact for the treatment, and we cannot thank Genentech/Roche enough for supporting IT Herceptin treatment development. Lastly, and most importantly, I personally cannot thank enough the members of this forum for their support emotionally as this was a very hard year. For 8 months, Nina and I would get together every other weekend, but the times in between were mentally challenging. This forum provided me with something positive to do, a place to put my thoughts, and calm my fears. Keep up the great work for all of those who read and may or may not contribute themselves.

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

Carol is still doing fine, today is her 47th birthday and is enjoying it to the full!! Will have an MRI in 2 weeks and will post results here.
Mario

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

YEAH, HAPPY BIRTHDAY Carol, You are such an inspiration to others, Have fun.

Prayers for continued healing and Improved scans and MORE BIRTHDAYS!!!!

Darita

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

Happy Birthday, Carol!!

I hope we're both around to celebrate your 57th, 67th, 77th.....

Denise

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

Hope Carol has many more occasions to celebrate. My daughter felt she had accomplished something of importance when she made it to her 50th this last year. With this new IT treatment we have renewed hope for many more birthdays.
I hope there are many more birthdays for all.
Ev

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

Thank Denise, Darita and Evlin for your good wishes!
Happy Valentine's to all.

Mario

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

Susan's MRI is showing some type of increased activity. Could it be from the lumbar puncture truma? We were so hoping for some irradication signs in this last MRI.

At least the Ommaya is now in place and she won't have to use the lumbar area from now on.

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

Carol's first MRI also showed increased activity, only after her 2nd MRI had it settled. I think it is the herceptin working on the cells and had happened with my wife. It takes time.
Mario

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

She was at 40 mg several months. Then she rceived 60 mg x four and then 80 x one and this is not just the second MRI. I am just hoping against hope that this is just activity from destruction or possibly truma from the several very difficult and painful Lumbar punctures.

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

But Carol's dose went up very quickly, if i remember correctly with the 14th dose we were already at 100mg, and MRI still showed more new spots inside the brain on the 2nd MRI after the 14th dose, then went to 150mg and after 22 weeks it just settled. With 40mg I doubt how much was it working, but with 80mg it is going to work and you will see the result over the next 2 MRIs. I don't think that doing lumbar instead of ommaya does much difference.
Mario