Intrathecal (IT) Herceptin for brain mets

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  • marvass
    marvass Member Posts: 57
    edited June 2012
    MRI results of today:
    Thank God, no progression. Herceptin is working and there are no new tumors. And all present brain tumors are same size as two months ago, even with such a small dose of intrathecal herceptin. So on the way of getting destroyed, just as all the previous that did this. Next MRI in 6 weeks and we should find nothing left!!
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  • Leah_S
    Leah_S Member Posts: 8,458
    edited June 2012

    Mario, I'm so glad to hear this! I hope the tx continues to work its magic.

    All the best.

    Leah

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  • marvass
    marvass Member Posts: 57
    edited June 2012

    Thanks Leah.  Sure it will.

    Mario

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  • marvass
    marvass Member Posts: 57
    edited June 2012

    Dose escalated to 90 mg IT herceptin together with 25 mg IT hydrocortisone (steroid) per week, as from this week. Should do the trick. Took first dose and still no side effects with this higher dose. Fingers crossed. Have to bear with me for another 6 weeks for results.

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  • marvass
    marvass Member Posts: 57
    edited July 2012

    Quick update:

    Last week dose was increased to 100 mg IT herceptin and 50 mg IT hydrocortisone per week (together with IV herceptin 6 mg per kilo every 3 weeks). My wife is feeling fine, no funny feelings anymore, just as if she is cured. She did not need any painkillers or oral steroids this week, just after 7 IT procedures. From outside everything is looking great, now have to wait another 4 weeks or maybe less (too eager to wait this long!!) for next MRI. Fingers crossed.

    Will keep you posted.


    Mario

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  • sueopp
    sueopp Member Posts: 1,541
    edited July 2012

    Thanks, Mario, and do keep us posted.  I am really interested in this process.  SUE

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  • bestfriend05
    bestfriend05 Member Posts: 227
    edited July 2012

    glad to know the treatment is doing good..! fingers crossed for u..xx

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  • marvass
    marvass Member Posts: 57
    edited July 2012

    Thanks bestfriend08.

    Sure I will keep u posted Sue!

    Mario

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  • sbidalia
    sbidalia Member Posts: 33
    edited July 2012

    Suzanne and I are so happy to hear that your wife is doing so well on IT Herceptin. Suzanne also continues to thrive with Herceptin to the Ommaya port with a clear MRI.  No sign of meningeal metastasis anymore or brain lesions.She also takes oral Tykerb. I agree with your statement that this is the best treatment right now for Her2 pos. brain mets. The gold standard. Our miracle!

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  • Asroback
    Asroback Member Posts: 2
    edited July 2012

    Where did you find someone to administer it off trial?

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  • marvass
    marvass Member Posts: 57
    edited July 2012

    sbdalia, thanks very much.

    asroback, I am in Europe, but i know that rolepaul got this off trial at MD Anderson in texas, sbdalia and courtney got this off trial in California, see above.

    My wife is still getting 100mg herceptin IT, 50 steroid IT, every week.  She also gets IV herceptin 6mg/kg every 3 weeks.  That is all, still doing fine.  New MRI results should be in about 2 weeks.Will keep you posted.

    Mario

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2012

    Mario, I'm so glad to hear your wife is doing well. May she continue to do so!

    Leah

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  • Asroback
    Asroback Member Posts: 2
    edited July 2012

    Thank you, Mario. I have been on a desperate search for IT Herceptin. It seems to have amazing results! I have been dealing with brain mets for almost 2 years and most recently a spot in my spinal cord, and I'm only 30! Thank you so much for giving us hope!

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  • sbidalia
    sbidalia Member Posts: 33
    edited July 2012

    @asroback: My daughter first received it at UCLA from Dr. Glasby, and now receives it at Cedars Sinai in LA. Both have been wonderful. Good luck!

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  • marvass
    marvass Member Posts: 57
    edited July 2012

    asroback, get in touch with rolepaul NOW, I'm sure he can help you out and find you where to go in the US.  His wife had 30 spots on the spinal cord plus brain mets and all vanished in 3 months.  No WBR or anything else, this is your cure for sure if you are her2+.  And do not wait any longer.  Good luck.

    Mario

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  • marvass
    marvass Member Posts: 57
    edited July 2012

    Thanks Leah

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  • marvass
    marvass Member Posts: 57
    edited August 2012

    MRI of 2 weeks ago came out to be not as good as we expected. The 6 tumors that were present before stayed the same size, however there are some new small spots around the brain and so most probably this dosage of 100mg IT herceptin is not working to clear all. However doctors said that they are not certain that this means progression, it could be that this new spots are herceptin marks on the cells that were present. Now the dosage has been increased to 150mg IT herceptin together with 50mg steroid per week. My wife can tolerate this without any sde effects at all. Quality of life is still very good. We are also starting lapatinib as from next week, and then MRI is another 6 weeks or so, to check if the tumors start shrinking.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2012

    Mario, this sounds good. It might not be what you expected (or wanted) but the docs seem to feel she's stable, which is no small thing.

    All the best.

    Leah

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2012

    Sounds good to me, too. Hope the new spots are really nothing and the higher dose with lapatinib erases any questions.

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  • marvass
    marvass Member Posts: 57
    edited August 2012

    Thanks both of you!! Hope we can solve everything soon, for this is a lot of worrying for both of us.

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  • mauimom
    mauimom Member Posts: 80
    edited August 2012

    hi - I, too, am getting intrathecal herceptin.  i've had four of six weekly treatments.  for those of you also doing this, do you find that your neck/back area tightens up and is painful for at least two-three days after your treatment?  so far the pain has been the biggest side effect for me.  now we may be adding in a chemo drug intrathecally as well - has anyone had that?  sorry for all the questions...and thank you in advance!

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  • marvass
    marvass Member Posts: 57
    edited September 2012

    no pain after IT at all.  Rolepaul did topotecan as well, what chemo are you getting and what is your dose of IT herceptin?

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  • mauimom
    mauimom Member Posts: 80
    edited September 2012

    I think I'm getting 440 herceptin - the docs are meeting today to discuss adding topotecan to the mix. And whether to do rads to my spine before finishing up the intrathecal stuff. The pain was so bad Monday I had to go in for pain meds and decadron iv. Arachnoiditis I think they said. Good thing my husband was there - I don't know why they tell me anything after giving me morphine. I have to idea what they tell me half the time!

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  • marvass
    marvass Member Posts: 57
    edited September 2012

    wow, that is a high dose 440mg intrathecal!! If you can confirm this I will tell our oncolgist about it, because we are only getting 150mg.

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  • marvass
    marvass Member Posts: 57
    edited October 2012

    Update on MRI of yesterday:

    Brain mets nearly gone, even those that were deep brain, all this with IT herceptin 150mg every week, IV herceptin 6 mg/kilo every 3 weeks and tykerb 1250mg per day.  No chemo or radiation taken during hte past few months.  Seems that it is working perfectly for my wife. 

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited October 2012

    Mario, I'm so glad to hear this news!

    Leah

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  • marvass
    marvass Member Posts: 57
    edited October 2012

    Thanks Leah, will keep u updated.

    Mario

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  • marvass
    marvass Member Posts: 57
    edited December 2012

    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

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  • bhd1
    bhd1 Member Posts: 3,874
    edited December 2012

    Mario so glad your wife is doing better. Where is she being treated?

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  • bhd1
    bhd1 Member Posts: 3,874
    edited December 2012

    What is it?

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