 |
04-20-2013, 12:59 PM
|
#1
|
|
Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
|
IT herceptin for brain mets only??
Hiya,
I can't seem to find any clinical trials for IT herceptin for brain mets only. They are only available in the US if you have leptomeningeal involvement.
Is this correct? Has anyone else found anything out there for only brain mets?
I don't think there's anything here in Canada.
I would be on the first flight to wherever, whenever, to get this.
__________________
[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
|
|
|
|
04-20-2013, 01:34 PM
|
#2
|
|
Senior Member
Join Date: Feb 2009
Posts: 1,526
|
Re: IT herceptin for brain mets only??
Hi
Have you checked if there are any trials in England? I know its a long way away but would be happy to offer you accommodation if there's a suitable one.
Ellie
|
|
|
|
|
04-20-2013, 02:12 PM
|
#3
|
|
Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
|
Re: IT herceptin for brain mets only??
Oh Ellie,
How about I just come for a visit! lol
You are so great!
I will look in to it though. UK, all the way!! 
__________________
[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
|
|
|
|
|
04-20-2013, 03:22 PM
|
#4
|
|
Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
|
Re: IT herceptin for brain mets only??
Jilly, have you researched PMH (Princess Margaret Hospital) here in Toronto - it's the number one cancer hospital in Canada, often noted as in the top 5 worldwide. Approximately 20% of patients are on clinical trials there.
I had my mastectomy there, and follow-up with my breast surgeon for 3 years afterwards. Also have my yearly lymphedema appointment there.
I would look into calling them on Monday morning. Sometimes a phone call and speaking to a live person can get you further than just milling around on websites.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
|
|
|
|
|
04-20-2013, 06:41 PM
|
#5
|
|
Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
|
Re: IT herceptin for brain mets only??
Some of us talk local oncologist into doing it off label. I am using IT Herceptin for spinal mets.
Good luck to you
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.
|
|
|
|
|
04-20-2013, 07:18 PM
|
#6
|
|
Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
|
Re: IT herceptin for brain mets only??
Caya, I've been to PM for a couple of things, like new surgeon to do my other breast. That is on hold at the moment, as I have to deal with the uncertainty of my brain. Thanks for the thought on PM and trials. I'm on their website right now.
Darita, Thank you. I will ask my doctor again and may just beg, if it comes down to the fact that I have progression. Still hoping for necrosis after radiation. Keep us posted on the IT herceptin. What's it like?
Jill
__________________
[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
|
|
|
|
|
04-22-2013, 08:27 AM
|
#7
|
|
Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
|
Re: IT herceptin for brain mets only??
This is the reply that I got back from a clinical trials guy:
For LM disease it can be seen sometimes on MRI’s or if a spinal tap is done. It is not clear that giving it into the spinal fluid would allow it to penetrate into the brain to be of value.
I am unaware of anyone.
Sorry.
__________________
[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
|
|
|
|
|
04-22-2013, 11:27 PM
|
#8
|
|
Senior Member
Join Date: May 2012
Posts: 105
|
Re: IT herceptin for brain mets only??
My wife had deep brain mets and it has worked, but by a local oncologist, off label.
Mario
|
|
|
|
|
04-23-2013, 06:30 AM
|
#9
|
|
Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
|
Re: IT herceptin for brain mets only??
Thanks Mario, I PM'd you.
Cheers! Jill
__________________
[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 11:34 AM.
|
Linear Mode
