HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 06-10-2011, 12:41 PM   #1
alocin
Member
 
Join Date: Jun 2011
Posts: 6
Herceptin Trastuzumab intrathecal

Dear all,
I try to find out which clinic is applying the Herceptin/ Trastuzumab intrathecal-method. Please, if somebody of you knows something, please let me know. I am asking for my best friend who is suffering from breast cancer HER 2 with brain metastases.
Thank you very much
Nicola
alocin is offline   Reply With Quote
Old 06-10-2011, 01:14 PM   #2
schoonder
Senior Member
 
Join Date: Jul 2008
Posts: 186
Re: Herceptin Trastuzumab intrathecal

Nicola, I know very little about this subject, but maybe more knowledgeable help will check in.
A clinical trial dealing with trastuzumab intrathecal which isn't recruiting as yet is listed on clinicaltrials.gov. No mention is made of brain metastasis but surely people at NorthWestern U might be able to provide further assistance. Most likely you'll need to locate an oncologist who's willing to use Herceptin off-label. Goodluck in finding help for your dear friend.
http://www.clinicaltrials.gov/ct2/sh...tuzumab&rank=1
schoonder is offline   Reply With Quote
Old 06-10-2011, 02:55 PM   #3
krisvell
Senior Member
 
krisvell's Avatar
 
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
Re: Herceptin Trastuzumab intrathecal

Nicola,
There are so many knowledgeable people on this web site that can be of help. I think you would get more meaningful information if you could share a summary of your friend's Breast Cancer similar to the signatures you see on the posts.

I too have a single brian met and have thought about intratecal treatment too.

Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
krisvell is offline   Reply With Quote
Old 06-11-2011, 01:00 AM   #4
alocin
Member
 
Join Date: Jun 2011
Posts: 6
Re: Herceptin Trastuzumab intrathecal

Thank you very very much. I will write a signature as you mentionned. Where do you want to ask for this kind of therapy? I wish you all the best for you.
alocin is offline   Reply With Quote
Old 08-07-2011, 07:13 AM   #5
Unregistered
Guest
 
Posts: n/a
Re: Herceptin Trastuzumab intrathecal

My wife started intrathecal herceptin in Chicago on Aug 1, 2011. We have done 2 treatments so far. We are the first in this trial. Those women with LM disease need to enroll in this trial. It can be found on the government web site or you can contact Dr. Raizer at Northwestern University in Chicago. My wife can be reached at cotyav54@yahoo.com
  Reply With Quote
Old 08-07-2011, 11:54 PM   #6
Unregistered
Guest
 
Posts: n/a
Re: Herceptin Trastuzumab intrathecal

Thank you very much for your kind reply, I will tell my friend. All the best for your wife and for you. Thank you.
  Reply With Quote
Old 08-08-2011, 01:01 AM   #7
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Herceptin Trastuzumab intrathecal

We do have at least one member who has undergone the Intrathecal procedure:

http://her2support.org/vbulletin/sho...cal#post249680
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
Jackie07 is offline   Reply With Quote
Old 08-08-2011, 02:07 PM   #8
CourtneyL
Senior Member
 
CourtneyL's Avatar
 
Join Date: Aug 2008
Location: San Francisco
Posts: 260
Re: Herceptin Trastuzumab intrathecal

Hmmm, don't know how I missed this thread. Sorry for not chiming in sooner. Yes, I have been receiving Intrathecal Herceptin since April of this year. I go for a follow-up brain MRI tomorrow to see how things are going. I'll report back as soon as I know the results - hopefully things are still under control. I had a follow-up MRI after only two treatments in May of this year and it showed shrinkage to all four of my active brain mets. All the others that had been treated with Gamma Knife were either still shrinking or gone completely. Let's hope our magic Vitamin H can do the same!
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.

Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial

Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED

Send me a PM if you'd like to follow my journey on Caringbridge.
CourtneyL is offline   Reply With Quote
Old 08-09-2011, 12:29 PM   #9
schoolteacher
Senior Member
 
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
Re: Herceptin Trastuzumab intrathecal

Courtney,

Hope to hear from you soon.

Amelia
schoolteacher is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 11:28 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter