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07-10-2013, 06:08 PM
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#1
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Member
Join Date: May 2013
Location: Manorville, NY; the beautiful pine barrens of Long Island where nature is beautiful; tree farms, horse farms, pine barrens, and life; birds, flowers, butterflies, plants, fresh clean air.
Posts: 11
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IT-Herceptin - Only the beginning....
Hi All! Well I have been accepted into the newest IT-Herceptin Trial that is now going on at the Satellite Site in Manhattan's Memorial Sloan Kettering. I had my first treatment of 60 mg of Herceptin just yesterday and went through a series of lab rat testings throughout the 7 hours that I was there. The tests, I understand, are important for this study for it to hopefully be a success to myself and others in the future! But, yes, they were mentally and physically draining I must say. Now back home and feeling a bit queezy; not nauseous, just wishy, washy in my stomach. I think a good sit with "the John" might help this out. I also found out that I am the first patient to receive the 60 mg. in this study. Hoping to be a pioneer for all of our futures. Wishing all of us will have answers and meds in the near future that will banish this disease from our futures and our childrens and grandchildren's futures! Prayers to all and I will continue to update as trial progresses.
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07-10-2013, 06:19 PM
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#2
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: IT-Herceptin - Only the beginning....
Momof4boys,
What does the IT stand for?
You are a pioneer! Thanks for being willing to join a study.
I love your location description.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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07-10-2013, 07:44 PM
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#3
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: IT-Herceptin - Only the beginning....
May you have success with the trial and yes, may being a pioneer help to banish this disease from our existence.
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07-11-2013, 12:16 AM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: IT-Herceptin - Only the beginning....
I T = Intra Thecal in this case. Very new and moving into greater use.
__________________
"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.
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07-11-2013, 08:49 AM
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#5
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: IT-Herceptin - Only the beginning....
Momof4boys,
Thanks for posting and telling us about the trial and your experiences. And you are a pioneer !!!
I also love the description of where you live!
Best wishes,
karen z
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07-11-2013, 09:13 AM
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#6
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: IT-Herceptin - Only the beginning....
Congratulations "Mom"!!
Best of everything to you!
You will most certainly be in my prayers
Please keep us posted
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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07-11-2013, 02:55 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: IT-Herceptin - Only the beginning....
Thanks for doing the trial and sending best wishes to you!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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