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Old 04-20-2015, 11:27 AM   #1
Vicky
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Join Date: May 2011
Posts: 137
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hello,

I was just coming to look for this thread, and here it is front and center. I could use some help!

With a previously treated brain metastasis possibly growing ( unknown if its growth or necrosis) on my latest MRI's, plus a new 9 mm spot very close to it, I am trying to figure out how best to proceed with treatment. I have had stereotactic radio surgery- once to this older spot, and once to another spot that has shrunk.

I mentioned IT Herceptin to my Oncologist, who was very open minded about it. It has not been done in my treatment facility, and he has many questions about it. Is there a doctor who would answer his questions such as dosage, and pre-meds, side-effects, etc.? Or should I seek out going somewhere for treatment? I live on the border of North Dakota and Minnesota, and have had great treatment here so far.

For now they have referred me to a Neurosurgeon for a consult, but I am open to suggestions, any help you can offer. Thank you!!
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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Old 04-20-2015, 09:02 PM   #2
Lani
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Join Date: Mar 2006
Posts: 4,778
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Vicky leptomeningeal metastases are those that sit on the outer linings of the brain and spinal cord. Cerebrospinal fluid circulates within those membranes.

If your brain mets are not near the outer (or inner) linings of the brain, it is unlikely IT herceptin can get to them as I understand it.

Please be certain to clarify where your brain mets are and how far from the CSF they may lie.
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Old 04-20-2015, 10:06 PM   #3
Rolepaul
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Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Lani,
Actually, at the doses that were used with Nina and Carol, three of the deep brain patients had good results. It just means that steroids are needed to keep the swelling from causing problems. It is not easy to get patients treated, but there have been three that I am aware of that all had good results. IT does work better on leptimeningeal cases, but there is pretty good evidence that these higher doses are giving positive results as well. As always, Gamma Knife should be the first choice if the lesion is smaller than 2 cm and not near critical function areas. I get information that is not yet public knowledge. That is what I do for a living. There are overseas locations that are not always Medical Industry or medical research friendly until a leader's wife/daughter/mother/granddaughter has an issue.
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