Intrathecal (IT) Herceptin for brain mets

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  • scuttlers
    scuttlers Member Posts: 1,658
    edited May 2013

    Mario, how often was the Herceptin given? Every 3 weeks? Does she have a reservoir? So incredibly happy that it worked!!!!

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  • marvass
    marvass Member Posts: 57
    edited May 2013

    IT 150mg herceptine and 50mg hydrocortisone every week, and IV herceptine 6mg per kilo every 3 weeks.  It works.  No reservour required, it can be done by lumbar puncture.  However with a reservour it would be easier.

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  • sueopp
    sueopp Member Posts: 1,541
    edited May 2013

    Thank you again, Mario, for sharing.  I am sorry that your wife has been struggling with the aftermaths, but am also so very glad that you and she are fighting the monster and winning.  You give us hope.  Very best to you and to her  - sending good karma.   SUE

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  • Lshanle2
    Lshanle2 Member Posts: 2
    edited April 2014

    my mom just had an MRI and found brain mets.  I am looking for a doctor or hospital close to chicago or the surrounding states that will do IT herceptin. Can anyone help

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  • Lshanle2
    Lshanle2 Member Posts: 2
    edited April 2014

    my mom just had an MRI and found brain mets. I am looking for a doctor or hospital close to chicago or the surrounding states that will do IT herceptin. Can anyone help

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  • marvass
    marvass Member Posts: 57
    edited February 2015

    MRI and CT of today

    3 new lesions in the brain after 21 months off intrathecal herceptin. Will have to restart the treatment.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited February 2015

    Mario, I'm sorry to hear abut your wife's progression. Still, 21 months is pretty impressive. When you say she's restarting treatment, do you mean that she had a treatrment break or you're doing something else?

    Leah

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  • midwestmom
    midwestmom Member Posts: 1
    edited April 2015


    Hi all,

    I read this forum last year when I was investigating IT Herceptin for my mom's leptomeningeal metastases.  She has been on the treatment for a while now, and I am happy to share her experience if anyone is interested. 

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  • CAROL1MAINE
    CAROL1MAINE Member Posts: 114
    edited April 2015

    yes I think that would be very helpful. So pleased it is working for her. Was she Her2 + thanks

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  • Medstar5
    Medstar5 Member Posts: 2
    edited September 2015

    My wife is 58 and just received her first dose of IT Herceptin 80 mg,  she has 2 LM lesions on her spine and we are praying for some response.  She is participating in the Northwestern Memorial clinical trial in Chicago.  The progression of this cancer is unbelievable as it has doubled in size in just two weeks.  Can you please share your results?

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  • MiracleMileM
    MiracleMileM Member Posts: 103
    edited September 2015

    Dear Marvass, I am so sorry that your wife has to go back to IT herceptin. Keep us posted. Since apparently up to 50% of those with stage IV HER2+++ end up with brain mets, your wife's journey has been inspirational to me. Thank you for sharing it. I was diagnosed stage IV the beginning of December 2007 and, thanks to Herceptin, have been NED now for 7 years. And comforting me also was Sbidalia's report that her daughter was receiving IT herceptin at Cedars-Sinai in Los Angeles, where I go for treatment albeit for leptomeningeal metastases rather than brain mets per se.. But close enough to give me hope that I could get IT herceptin if I develop brain mets because herceptin works so well for me against my breast cancer.

    Marvass, you may want to consider your wife taking what I take in the hopes of reducing my risk of brain mets: On an empty stomach, 1500 mg green tea extract with quercetin. The empty stomach and quercetin enhance absorption. And with meals 3500-4000 mgs a day divided of curcumin - Drs best C-3 and curcumin phytosome. both pass the blood brain barrier and there is evidence for both of anti-tumor properties.

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  • Lewis_14
    Lewis_14 Member Posts: 1
    edited November 2015

    midwestmom, Medstar5, I would be interested in hearing how your mom, wife are doing and what their treatment plan is. My wife is starting this treatment for LM.

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  • marvass
    marvass Member Posts: 57
    edited November 2015

    My wife is still doing IT herceptin 150mg and hydrocortisone 50mg every 3 weeks though lumbar puncture, together with IV herceptin 6mg/kg. She is doing fine and mets are under control. We plan to go on like this till another MRI in two months time.


    Mario

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited November 2015

    Mario, thank you for the update. I'm so glad your wife is doing well.

    I hope she continues this way.

    Leah

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  • LDA
    LDA Member Posts: 1
    edited December 2017

    Hi,

    Would anyone know if (IT) Herceptin can be done in Australia? Are there any clinical trials world wide that are offering (IT) Herceptin?

    Any response would be greatly appreciated. Thanks


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  • lparrilla
    lparrilla Member Posts: 1
    edited September 2018

    Cedars-Sinai in Los Angeles does intrathecal Herceptin. Dr. Jonathan Hu in the neurology department Neurology Dept. (310) 423-8100.

    His asst. Rosie, direct line (310) 423-8418. I spoke with him about intrathecal Herceptin last week, Sept. 20, 2018. He said, however, that they only see good results for mets in the CSF (cerebro spinal fluid), not for other mets or primary brain tumors. He said the injection does not penetrate beyond the CSF. It sounds as if they don't administer it unless for CSF. You would need to check for certain with his office.

    Hope this helps. Leslie

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  • hhfp
    hhfp Member Posts: 51
    edited October 2018

    After my wife's oncologist mentioned it, we searched the web and see some clinical trials and also see some oncologists are doing it for treatment back in 2012 and before. Results are mixed as some say it works only on CSF (as mentioned above) and others had actual solid tumors disappear... I guess each individual is different and you won;t know until you try.

    In my wife's case, she was getting IV Herceptin and IT Methotrexate for 8 months before and it was not working. After trying out Gemzar and Eribulin with no improvement, her oncologist is going back to methotrexate. However, this time, it it IT Herceptin and IT Methotrexate... this started 2 weeks ago and she is seeing some improvements... IMHO, the difference this time is that instead of hoping enough IV herceptin gets into the CSF to work along IT methotrexate, it is actually injected into the brain along with methotrexate (which we know is in the CSF because that is where it is injected). Crossing our fingers for more improvements in future treatments (3 week administration cycles).

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