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Old 11-14-2013, 11:09 AM   #1
marvass
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Join Date: May 2012
Posts: 105
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hi Kaiulani and Paul,

Carol is still doing great, now she can talk very well and she is standing at last, even though she had 3 strokes this summer.
From the experience with the mistakes we did with my wife, I would irradiate the tumors and start IT herceptin as fast as possible, the more you delay the bigger are the chances of complications like my wife had. She has not done any intrathecal for the past 6 months and still all MRIs she did lately showed no signs of any tumors at all. Wish you luck. 1.5mg per kilo of IT Herceptin once weekly together with 50mg hydrocortisone seem to work on patients that Herceptin worked everywhere else except their brain.

Paul I am so glad Nina is still doing fine, good luck.
Mario
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Old 11-17-2013, 01:37 AM   #2
dchips1
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Location: Mesa, Az
Posts: 219
Cool Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hi to all off my IT friends, have been doing IT herceptin at 100mg weekly for almost 6 weeks. Still on Tykerb 750 daily as tolerated. IV 105mg Herceptin weekly. Tried a short run of Navelbine, with a negative bone marrow I still have a left shift, (some type of funky immature cells) in the cbc every week. Changes in CBC started with navelbine so that was a short run of that for me. Will redo scans here the next few weeks looking to go to every two weeks by summer if all scans are good. I am able to obtain my Herceptin thru the the mail in pharmacy thru my husbands insurance plan.
Peace and prayers and healing to all

Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 08-29-2014, 05:14 PM   #3
evlin75
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Join Date: Sep 2007
Posts: 118
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Paul,

Best wishes to you and Nina. Susan is still doing the ommaya Herceptin every week. Just finished cyber knife to an enlarged subclavicle lymph node.

Her genome results indicate afatinib or neratinb is appropriate for her because of the mutations found. They are trying for the afatinib first but on first try the insurance has refused approval.

The chemotherapy is getting tough for her - low blood counts and unsteadiness. She has taken herself off of them - hoping for the more targeted approach.

Ev
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