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10-14-2012, 05:11 PM
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#81
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Member
Join Date: Jul 2012
Posts: 13
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Mario, Let us know the MRI results. I'll be thinking of you and your wife. I'm sending along my best wishes for only good results.
Elvin, I'm glad things are looking up for you daughter and hope that trend continues.
Eileen
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10-15-2012, 07:04 AM
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#82
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Thanks all of you MRI is tomorrow, will post here
Elvin, my wife also got an infection through the lumbar puncture and had very high fever and was hospitalized for a week to get intravenous antibiotic and emergency meningitis treatment, but she responded very well and fever got down in a couple of days.
For tomorrow,
Mario
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10-16-2012, 11:37 AM
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#83
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
MRI results of my wife:
Most of the mets are gone only a few left, even those that were deep brain ones.
An edema is still visible with same contrast but swelled slightly.
Seems we are getting somewhere at last!! Thank god.
Mario
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10-16-2012, 07:48 PM
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#84
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Wonderful! Great news.
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10-16-2012, 08:54 PM
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#85
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Member
Join Date: Mar 2012
Posts: 19
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
SO HAPPY to hear your news- may it continue. hang in there!!
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10-17-2012, 05:22 AM
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#86
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
How wonderful for you both! Gods blessings to you both!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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10-18-2012, 12:50 AM
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#87
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Thanks to all
Mario
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10-31-2012, 09:56 AM
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#88
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
My thoughts are with you and Carol. I hope you have similar results to us. Nina is still getting lots of chemo, but with the overwhelmingly good results we are hoping to get to once per month on IV and IT. Seven months since anything confirmed as disease in either the brain or spine, although there were scares in August and September. Mario, we are hoping for the success Nina has had. Keep posting and all the good feelings from this site will carry Carol along.
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11-02-2012, 09:34 AM
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#89
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Thanks Paul. Looks like we are closing in too.
Regards
Mario
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12-01-2012, 12:00 PM
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#90
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Doctor asked to start Xeloda too!! Is there any issue that anyone knows of when taking Xeloda with Herceptin?
Carol still doing fine but it is taking a bit long to clear the brain completely from cancer cells, and this is the reason why Xeloda, Tykerb, IT IV herceptin are being considered.
In last MRI most of the tumors were gone but the edema that is left at an outskirts part of the brain is worrying. At least this is not deep brain like the ones that are now cleared.
Wish us luck.
Next MRI in a month's time, will keep you updated,
Mario
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12-01-2012, 12:51 PM
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#91
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
My daughter took xeloda with herceptin and tykerb after brain surgery followed by WBR several years ago. There was no negative interaction in her case. The xeloda did not seem to do anything for her and was discontinued.
At this time she is getting the IT therapy with herceptin 40 and topotecan weekly- and also IV therapy with herceptin and perjeta every three weeks. She continues taking the tykerb.
The cervical area of the spine mets has resolved . The other spine mets are stable- basically no change There is a questionable spot on the brain yet. The next MRI is in two weeks.
She started out in Chicago in August with just the low dose of 10 twice a week on the Herceptin IT. She has been on the 40 for a couple months. We are trying to persuade the doctor to up the dose of IT Herceptin. He will decide what to change after the next MRI.
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12-02-2012, 01:47 AM
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#92
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Thanks Elvin for this information. Wish your daughter gets quick recovery.
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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12-03-2012, 09:19 AM
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#93
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Mario,
Xeloda can cause her hands and feet to have skin issues. Look at Monique Doyle Spencer using Henna for Hand foot syndrome. Also Vitamin K cream on the hands. Nina did Udder Cream and Bag Balm, one of those during the day and one at night because she did not want the yellow hands from the Henna. But she yellow footed so she could walk without pain. Henna is Clinical trials for this, but Vitamin K cream worked almost as well.
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12-04-2012, 12:40 PM
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#94
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Thanks Paul, you are always a great help!
Mario
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12-27-2012, 10:21 AM
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#95
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
MRI of this week:
Edema is less than half it was two month ago.
All tumors gone except for 3 small ones now measure 4mm or less. These were around 6 to 7 mm 4 months ago.
All the tumors that were gone in the MRI of two months ago did not show up again in this new MRI.
Looks like we are getting very close to clear all the brain from this metastatic cancer. Maybe with next MRI end of next February, fingers crossed.
Mario
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12-27-2012, 01:55 PM
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#96
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
That is great news Mario! Very happy for you and your wife !!!
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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12-28-2012, 03:33 PM
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#97
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Mario,
Sounds great. I hope the steroids are keeping down the side effects. Nina is doing excellent and we might be getting some traction on getting others treated. I am working on how to get contact with some people to get funding for 200 patients. Nina and I were invited to meet with the president of a major pharmaceutical equipment supplier to tell our story for the first time in public. I am trying to see what my new company will let me do. Boulder Colorado is the new location to be with Nina's parents and other family members. We lived on the other side of Denver previously, so it is good to go back home. Nina is sore in the legs, possibly from nerve damage, so she gets a massage from me every day. It is very helpful to her and I like the feeling of her skin on my hands.
Christmas was special. She was not supposed to be alive, so it was truely wonderful to be in Colorado. I had called a company and they made a job offer that will work. It also might let be more outspoken than my current company.
Merry Christmas to you and Carol and a Happy New Year. A year from now you will both be celebrating as we did.
Paul
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01-04-2013, 07:30 AM
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#98
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Thanks to both of you, yanyan and Paul
Great to hear the good news of Nina, wish you luck.
Happy new year to all of you.
Mario
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01-04-2013, 10:23 PM
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#99
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Hi Ev ! I hope the loaded dosage will do the trick! You are such a wonderful mom! My mom flew all the way form china and is staying with me again for 5 months to take care of me! I just wish I dont have to put her thru this. Many times our care givers or close ones suffer more than us the patients emotionally. I can't imagine if my daughter ever had to deal with this. Hopefully they will soon find a cure for cancer. Blessings to the ones that support us with all their love!!
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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01-05-2013, 12:18 AM
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#100
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Anyone on this? It opened last April - at Northwestern, Chicago.
Prot# H4320//NU 10C03: Phase I/II Dose Escalation Trial to Assess Safety of Intrathecal Trastuzumab for the Treatment of Leptomeningeal Metastases in HER2 Positive Breast Cancer
Hugh Anderson; Mary Cianfrocca; William Gradishar; Sean Grimm; Virginia Georgia Kaklamani; Jeffrey Raizer
4/22/2011 - 4/22/2014
Sponsoring Organization:Genentech, Inc.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
Last edited by StephN; 01-05-2013 at 11:26 AM..
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