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04-22-2013, 03:47 PM
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#1
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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IT Perjeta? For those with Brain and/or spine involvement
For those with brain or spine involvement, there is an unsubstantiated rumor that IT Pertuzumab will be available at therapeutic dosage before July 2013. This will use the Nina Dosing that has proved successful with my wife. I heard it will not be MD Anderson as the primary cancer center, but there will be multiple centers across the country. Genentech has decided to fund the study after considering input from knowledgeable public comment. I do not know what that might mean, but I can guess.
We had a false scare on 4/15 that we were told was not an issue the next day. A very uncomfortable 24 hours. All I can say is we understand how each of you feels with bad news. We just simply get up and start fighting again. As Nina says "You are the source of eggs in this fight, but I am the source of the bacon!"
We are going to stay on IT Herceptin until we get news that it has stopped working before we change. Right now, Nina is perfect (okay terrified, jumpy, and a bit more bitter after this last call) but able to do almost all she did before the disease struck her in the autumn of 2009 and went to the spine in December of 2011. She drives better after all of this because life is so much more important. I am glad to have her around and glad to help any who need the support on this forum.
Good luck to all of you who read this forum. Know that there are others out there struggling just as you are, and there are people out there willing to fight for you to get better.
RolePaul now in Boulder Colorado
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04-22-2013, 06:39 PM
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#2
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: IT Perjeta? For those with Brain and/or spine involvement
Rolepaul, I'm glad the scare was false. Much love to you and Nina.
Thank you for sharing this info. I will discuss with my MO on Friday. I'd travel far and wide for this, if it wasn't offered in Canada.
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]
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04-23-2013, 01:07 PM
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#3
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: IT Perjeta? For those with Brain and/or spine involvement
Let me see if Genentech will agree to do something for you. Genentech senior management has been very nice lately.
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04-23-2013, 01:57 PM
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#4
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: IT Perjeta? For those with Brain and/or spine involvement
REALLY? WOW.
Oh wow, what would I need to do, I wonder. I have no clue where to start.
Thanks Mr. Paul. 
__________________
[
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]
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04-23-2013, 02:02 PM
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#5
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: IT Perjeta? For those with Brain and/or spine involvement
I will publish info as soon as I can officially. I will see if they are going to Canada with this. I think they are going to France, but not sure on when. I was told to keep some things under wraps.
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04-23-2013, 02:05 PM
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#6
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: IT Perjeta? For those with Brain and/or spine involvement
Ok, great!
Wherever it is, I'll go to it!
Plane tickets to the States or France, sign me up!
__________________
[
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]
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04-23-2013, 02:55 PM
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#7
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Re: IT Perjeta? For those with Brain and/or spine involvement
thanks again as always, get my #2 of 42 mg this week, the herceptin is coming from my rx part of health insurance, the will send enough to due weekly. They must already get some kind of crazy discount on these drugs, my tykerb, and Herceptin, orders say say copay adjustment program.
I am still on 1 mg decadron still a little headache, but driving self around, use a walk if no cart to go through stores, and getting ready for summer here in the desert. I will too probably stick to the herceptin, IT and IV, along with my Tykerb for now. Save it for future arsenal. after the 4th 42mg , I think if all goes well should be able to go up another 21mg.x 4, as long as scans are stable, then on to 1.5mg/kg.
Take care and prayers for healing and those who are seeking better options than the "old school" stuff.
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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04-28-2013, 07:09 AM
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#8
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: IT Perjeta? For those with Brain and/or spine involvement
Darita, I'm up for new school too!!!
__________________
[
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]
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04-28-2013, 08:33 PM
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#9
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: IT Perjeta? For those with Brain and/or spine involvement
My daughter Susan was doing Perjeta IV for whole body treatment, but progressed. Some bone increase and more involved lymph nodes.
Doubt if this would then be of benefit intrathecally. She is now on the Kadcyla (tdm1). has had but two treatments so don't know yet what benefit she might get.
She has reached the stage with the Depocyt that it is monthly now and all other weeks she gets the Herceptin. She had some bad days battling chemical meningitis. but steroids and anti-nausea meds helped.
Some improvement in the spinal cord over all but a slight progression in the caudal area. Might need that radiated. Will do another MRI to help decide.
Glad Nina continues to do well. That also helps give us hope.
Ev
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