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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Intrathecal (IT) Herceptin for brain mets

Topic: Intrathecal (IT) Herceptin for brain mets

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: May 2, 2012 04:51AM - edited Jun 10, 2012 04:08PM by marvass

marvass wrote:

I have seen that there are some members who have used intrathecal herceptin.  I have been searching for a place where one can get this, and although there are two clinical trials going on I have not managed to enrole.  Does anyone know where to get this treatment, except for these two trials.  My wife needs this badly because her mets are growing out of control and no treatment is working.  The rest of her body is clear with the help of intravenous herceptin.  So most probably IT administration will help to kill her brain mets as well.

Mario

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May 2, 2012 06:07AM carcharm wrote:

I'm not sure if the Cleveland Clinic*Ohio does this type of treatment or not. I know they do intraperitoneal chemo. I've attached this website where if you go to the online services link you can get a second opinion online from a physician. 

 www.ccf.org

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May 2, 2012 07:39AM marvass wrote:

Thanks carcharm, will check it out as soon as possible.

Anyone else got an idea who can do this?

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May 2, 2012 09:19AM formygirls wrote:

Other than the clinical trial trial in Chicago for spinal mets, I have read some posts from people on the Her2 support group discussion board. A few people have tried it there. Good luck.

Initially diagnosed with triple neg stage 3 bc in Feb 2008. Mets dx in Feb 2012 with change in receptors .Mets to liver, brain, bone, lung and nodes and central nervous system. Dx 2/3/2012, IDC, 6cm+, Stage IV, Grade 3, 2/29 nodes, ER+/PR-, HER2+
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May 2, 2012 09:27AM formygirls wrote:


  HER2 Support Group Forums > her2group

I do not know how to post links with my ipad yet and was only able to copy the first message from the discussion thread on the site.
complete response of leptomeningeal her2+ bc to intrathecal herceptin (case report
other than our member Courtney)

Complete response in HER2+ leptomeningeal carcinomatosis from breast cancer with intrathecal trastuzumab
Mafalda Oliveira • Sofia Braga • Jose ́ Lu ́ıs Passos-Coelho • Ricardo Fonseca • Joa ̃o Oliveira
Received: 15 February 2011 / Accepted: 16 February 2011 / Published online: 3 March 2011 Ó Springer Science+Business Media, LLC. 2011

M. Oliveira (&) 􏰀 J. L. Passos-Coelho 􏰀 J. Oliveira Medical Oncology Department, Instituto Portugueˆs de Oncologia de Lisboa Francisco Gentil, Rua Professor Lima Basto, 1099-023 Lisbon, Portugal e-mail: mafalda.moliveira@gmail.com
S. Braga Instituto Gulbenkian de Cieˆncia, Rua da Quinta Grande, 6, P-2780-156 Oeiras, Portugal
R. Fonseca Pathology Department, Instituto Portugueˆs de Oncologia de Lisboa Francisco Gentil, Rua Professor Lima Basto, 1099-023 Lisbon, Portuga

BRIEF REPORT
Abstract

Introduction
Leptomeningeal carcinomatosis (LC) is a rare but rapidly fatal event in the natural history of breast cancer [1]. HER2? breast cancer has an increased risk of central nervous system (CNS) metastases [2] but there are little data on LC frequency in these tumors [3]. Trastuzumab, a monoclonal antibody against the extracellular domain of the HER2 receptor, is highly effective in systemic control of HER2? metastatic breast cancer [4] but it is not clear if it can penetrate the intact blood brain barrier (BBB) [5]. We report the case of a patient who received weekly intrathecal (IT) trastuzumab for LC from HER2? breast cancer for 18 months, with impressive neurological benefit.
Case report
A 40 year-old woman presented in April 2003 with a left- sided cT4bN1M0 estrogen receptor (ER) positive (70% of cells) invasive ductal carcinoma. She received six cycles of neoadjuvant chemotherapy (5-FU 500 mg/m2, epirubicin 100 mg/m. Trastuzumab, a monoclonal antibody against the HER2 receptor, is a major breakthrough in the treat- ment of HER2? breast cancer. However, its high molec- ular weight precludes it from crossing the intact blood– brain barrier, making the central nervous system a sanc- tuary to HER2? breast cancer metastases. We prospec- tively assessed functional outcome and toxicity of administering trastuzumab directly into the cerebrospinal fluid of a patient with leptomeningeal carcinomatosis (LC) and brain metastases from HER2? breast cancer that had already been treated with other intrathecal chemotherapy, with no benefit. Upon signed informed consent, weekly lumbar puncture with administration of trastuzumab 25 mg was begun to a 44 year-old women with metastatic breast cancer (lymph node, bone, lung, and liver involvement) previously treated with tamoxifen, letrozole, anthracy- clines, taxanes, capecitabine, intravenous trastuzumab, and lapatinib. She received 67 weekly administrations of intrathecal trastuzumab with marked clinical improvement and no adverse events. She survived 27 months after LC diagnosis. A complete leptomeningeal response, with no
evidence of leptomeningeal metastasis at necropsy, was achieved. We believe that intrathecal trastuzumab admin- istration should be prospectively evaluated to confirm clinical activity and optimize dose, schedule, and duration of treatment.
Keywords Intrathecal trastuzumab 􏰀 Leptomeningeal carcinomatosis 􏰀 HER2? breast cancer

Initially diagnosed with triple neg stage 3 bc in Feb 2008. Mets dx in Feb 2012 with change in receptors .Mets to liver, brain, bone, lung and nodes and central nervous system. Dx 2/3/2012, IDC, 6cm+, Stage IV, Grade 3, 2/29 nodes, ER+/PR-, HER2+
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May 2, 2012 09:44AM marvass wrote:

Thanks formygirls, will look into it.

Regards

Mario

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May 2, 2012 10:12AM Rohm wrote:

My oncologist at UCSF has mentioned it as an option and there was a woman from the HER2 support board who had it done there.  Good luck to you and your wife!  This is one hard road.

fuck-this-cancer.blogspot.com Dx 2/16/2010, IDC, 2cm, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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May 2, 2012 11:13AM marvass wrote:

Thanks Rohm will check it out now.

Regards

Mario

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May 2, 2012 11:07PM bikergal wrote:

I know one of my breast cancer friends' oncologist gave her intrathecal Herceptin for suspected leptominingeal metastases.  It was not in a trial.  The doctor was Dr. Garrett Smith in San Francisco. 

I hope this helps.

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May 3, 2012 12:58AM marvass wrote:

Of course it does !!  Thank you so much.

Do you know the hospital or clinic this doctor serves at?

Thanks again bikergal.

Regards

Mario

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May 3, 2012 02:51AM marvass wrote:

I found this doctor's number, thanks again bikergal

Mario

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May 3, 2012 03:13AM sbidalia wrote:

Hi Mario,

My daughter received IT Herceptin at UCLA under Dr. Galespy for leptomeningeal metastasis. There is no longer any sign of this. Sadly she had to change hospitals when Blue Shield and UCLA parted company but she will be starting it again now at Cedar Sinai where they are just learning how to administer it. Neither of these were trials. Another poster reported that his wife was receiving it at MD Anderson in Texas. Good luck to you.

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May 3, 2012 03:18AM marvass wrote:

Hey !!!

Great news, many thanks and good luck to your daughter.

I'll check this out now and contact in the morning.

Yes I talked already to Paul about the MD Anderson in Texas.

So Cedar Sinai and UCLA are doing it !! 

 Thanks a lot for your great help, sbidalia.

Regards,

Mario

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May 3, 2012 02:03PM MCTHO wrote:

Clinical trial GRN1005 uses Trastuzumab and has varies locations around the country.  Even if you can't get into the clinical trial, some of the doctors may be willing to work with you outside the trial using the ommaya resevoir.  I wish I had more information.  Wishing you and wife the best!

Dx 7/2009, IDC, Stage IV, Grade 3, 1/1 nodes, mets, ER-/PR-, HER2+
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May 3, 2012 02:31PM marvass wrote:

Thanks very much MCTHO, do you know if this trial gives intrathecal herceptin or intravenal?

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May 3, 2012 02:57PM - edited Jun 10, 2012 04:05PM by marvass

On last post, I have found this trial:

 clinicaltrials.gov/ct2/show/NC... 

This trial includes some drug called GRN1005 together with a dose of IV herceptin,  No Intrathecal is given.

Thanks again MCTHO

Mario

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May 3, 2012 04:58PM bikergal wrote:

Just to follow up on my previous post. . . . Many women in my support group see Dr. Smith, and they all love him.  He is from all accounts very compassionate and caring.  However, I personally have not been impressed by some of his treatment recommendations (for others), which did not seem consistent with evidence-based medicine.  Second opinions also have disagreed with his recommendations.  If you have other choices with respect to doctors that will administer intreathecal Herceptin, I would choose someone else, if you can get into see that person in a timely maner.  You should know that Dr. Slamon, who was the force behind Herceptin is at UCLA.  Although it is almost impossible to see him, his protegee, Dr. Hurvitz (spelling?) is more available.  The medical oncologists at UCSF, where I am treated, are excellent.  Getting in to see them, however, may be difficult.   

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May 4, 2012 12:10AM marvass wrote:

Will look them up, thanks again bikergal. Are you also getting IT herceptin there?

Mario

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May 4, 2012 12:44AM bikergal wrote:

No, luckily (knock wood) I do not need it at this time.  Just IV Herceptin for me. 

Good luck! 

You might also try posting on the Her2 support board -- www.her2support.org   People have posted there about intrathecal Herceptin.  If you indicate where you are located geographically, that might be helpful, too.   

If you need further info about UCSF or Dr. Smith, I am happy to try and help. 

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May 4, 2012 01:12AM marvass wrote:

I already did at her2support and got very little till now.

At the moment I am trying to get someone closer, near New York, where we are.  But still looking into all options.

Thanks again bikergal, and good luck.

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May 4, 2012 06:18PM bikergal wrote:

You also might try Dr. Nancy Lin at Dana Farber in Boston.  She has done a lot of research on brain metastases, and also specializes in Her2 positive disease.  (I also have heard that she is very nice.)  I have no idea, however if she would give intrathecal Herceptin.  Her research abstract and link to her profile are below. 

Research Abstract

Dr. Lin is a medical oncologist at Dana-Farber Cancer Institute focusing on the care of women with breast cancer. Her research focuses upon developing novel therapies for women with brain metastases, and upon exploring mechanisms of resistance and response to HER2-based therapy.

Publications

View All Publications  

http://www.dfhcc.harvard.edu/membership/profile/member/599/0/

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May 5, 2012 02:00AM marvass wrote:

Cleveland Ohio do not do intrathecal herceptin.

Thanks again bikergal, will check her out.

Mario

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May 5, 2012 07:24AM marvass wrote:

Sbidalia

Could you please tell me how much your daughter is getting in milligrams (mg) every three weeks, and if possible her weight.  I heard that IT herceptin must be given around 100 mg every week to work but depending upon wieght.

Thanks

Mario

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May 6, 2012 01:33AM - edited May 7, 2012 05:57AM by marvass

This Post was deleted by marvass.
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May 7, 2012 05:57AM marvass wrote:

The evidence that experimental work on IT herceptin showed that it works is found at these sites
http://peer.ccsd.cnrs.fr/docs/00/61/88/02/PDF/PEER_stage2_10.1007%252Fs10549-011-1417-2.pdf
http://www.ncbi.nlm.nih.gov/pubmed/21700455
http://www.ncbi.nlm.nih.gov/pubmed/16596213

Mario

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May 9, 2012 05:12AM marvass wrote:

The two trials going on in Europe, France and in Chicago

clinicaltrials.gov/ct2/show?te... 

clinicaltrials.gov/ct2/show?te... 

Still recruiting

Mario

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May 13, 2012 09:41PM formygirls wrote:

Bumping for Janette

Initially diagnosed with triple neg stage 3 bc in Feb 2008. Mets dx in Feb 2012 with change in receptors .Mets to liver, brain, bone, lung and nodes and central nervous system. Dx 2/3/2012, IDC, 6cm+, Stage IV, Grade 3, 2/29 nodes, ER+/PR-, HER2+
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Jun 10, 2012 11:00AM - edited Jun 10, 2012 04:10PM by marvass

After all we got accepted both in france and chicago trial but never went, our oncologist decided that he will do it for us.

My wife started 18 days ago on IT herceptin.  Already took 30mg first week, then 30mg second week, and 50mg two days ago.  No side effects except for a headache peaking two days after administration, which can be controlled through pain killers and light dose of steroids.

It looks like it is working because she already feels much much better.  Well, we believe strongly that this is the best available treatment for breast cancer mets in the brain when you are HER2+. Will keep you updated with next MRI in less than a month.

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Jun 10, 2012 06:29PM Leah_S wrote:

Marvass, I'm glad you were able to get this treatment, and I'm also glad to hear that it seems to be working.

All the best.

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Jun 11, 2012 12:39AM marvass wrote:

Thanks Leah

Mario

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Jun 23, 2012 05:49AM marvass wrote:

Here's an update:


Till now my wife took 30, 30, 50, 50 and 60 mg intrathecal herceptin, one dose every week, escalating this way, and 6mg per kilo intravenous herceptin, one dose every three weeks. Side effects are none, not even a headache anymore.  MRI will be done next week, will post results here.Fingers crossed.

Mario

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