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Old 09-14-2007, 06:04 PM   #1
Joe
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For those who had only a partial response to Herceptin

We received a press release today from Genentech. Christine and I spoke to the Product Manager of Herceptin at San Francisco last weekend and he was very excited about this.

Trastuzumab (Herceptin®) is a drug used to treat breast cancer in women whose tumors contain the receptor for a protein called HER2. In some women, however, the drug stops working. Researchers are therefore seeking more effective drugs for this disease.
Trastuzumab-MCC-DM1 is an investigational drug that contains trastuzumab linked to a chemotherapy drug. When trastuzumab binds to the HER2 protein, it then releases the chemotherapy drug directly to the tumor cells. Trastuzumab-MCC-DM1 has caused cancer cells to die in laboratory studies, and has prevented or slowed the growth of breast cancer in animal studies.

http://www.clinicaltrials.gov/ct/sho...509769?order=2


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Old 09-14-2007, 07:11 PM   #2
lilyecuadorian
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Smile thanks Joe

you are just a ANGEL ....with us .thanks thanks
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 09-14-2007, 07:35 PM   #3
Lolly
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Joe, your link didn't go to the specific trial, but I found it and have taken the liberty of providing it below:

A Study of Trastuzumab-MCC-DM1 Administered Intravenously to Patients With HER2-Positive Metastatic Breast Cancer
http://www.clinicaltrials.gov/ct/sho...509769?order=1
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 09-15-2007, 05:43 AM   #4
Barbara H.
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Smile Trial

I am waiting for one small test to allow me to take part in this trial. This is the trial I wasn't able to begin this past summer because of the low muga scan. Then after my muga increased the trial closed You also have to be off all treatment for four weeks. I have therefore been off all treatment since June. This has been painful for me because my cancer has continued to progress in the bones. Herceptin alone actually worked for me in the beginning. The breast cancer was in my lymph nodes, liver and lungs and a few infusions brought me to NED. Unfortunately, in February 06 it was detected in the bones. At this point, I am scheduled to receive my first infusion of this drug next Thursday. It must be quite tolerable because the oncologist said I should feel well enough to give my speech to my classroom parents at Curriculum Night later that evening. The tolerance of this drug certainly sounds better than what I have been reading about Tykerb on this forum. I was waiting until I received the official word of being in the trial to post this information, but with Joe's post decided not to wait. Of course, I will let everyone know how I tolerate this drug and what kind of response I receive from it.
Best regards,
Barbara H.
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Old 09-15-2007, 06:41 AM   #5
Joanne S
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Thanks again Joe! Can't thank you enough for your support and dedication in keeping us HER2ers informed.

WOW this is very exciting and promising news, Thank Genetech. And Thank the Lord!!

Let us all pray for best possible responses in this trial!
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Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 09-15-2007, 06:44 AM   #6
Joanne S
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Barbara, Sending my best wishes and praying for you!
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Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 09-15-2007, 08:01 AM   #7
pattyz
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Barbara,
Keeping good HOPEFUL thoughts for you...

It must have been so difficult not to be on any tx and waiting.

May you have a quick positive response.

hugs,
patty
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Old 09-15-2007, 08:49 AM   #8
Julie2
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Barbara,

I wishing all the best and a complete response with this drug. Please keep us posted.

Thanks,
Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 09-15-2007, 10:47 PM   #9
Sherryg683
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Exciting news, thanks for the info. I know I can always go here to keep up to date...sherryg
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 09-16-2007, 04:43 AM   #10
eric
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also available at Sloan....http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=06-049
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Old 09-16-2007, 08:31 AM   #11
Barbara H.
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trial

The trial that Eric posted is actually the trial I am in. It is the same drug, but it is a phase 1 trial. I believe I am in that trial because you have to have measurable disease to be in the phase II trial and for some reason bone mets are not easy to measure. I am being treated at the Dana Farber. When this trial first started a year ago treatment was every three weeks and I would have preferred that. Now it is every week. However, it is very tolerable for most patients, and I am therefore happy to be a part of this trial.
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Old 09-17-2007, 12:19 PM   #12
StephN
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Thumbs up Get on with it!

Barbara -
I am SO glad to hear that this trial is available to you. Am sure you would NOT have waited so long to start treating again if you (and your doc) had not thought this a good shot against those bone mets.

And an easy treatment to tolerate while you are back school teaching to boot. Sounds much better that getting "the trots" with the Tykerb. Can't imagine having to scoot out of the classroom in mid sentence ...

Will send you all the good vibes I can muster for this to be the last treatment you will need for these stubborn mets.
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"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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Old 09-17-2007, 01:34 PM   #13
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Barbara - please don't be afraid of Tykerb. Some have reactions to it, some don't. I have absolutely none. I tolerate it extremely well. Overall, I think I feel better on Tykerb than on Herceptin. I had a general malaise on Herceptin that I haven't felt since on Tykerb/Xeloda. But, I was on Herc for 18 months and have only been on T/X for 5 months. I don't even have diarrhea anymore on T/X (maybe one day a month). I only have a sore toenail. There are 'fixes' for the Tykerb side-effects, and I am guessing that many of the side-effects are from Xeloda too. I have found that the main key to tolerating all chemos and gene therapies is eating as healthy, whole, close to the earth as possible. Whenever I trip up just a little, my body tells me so by revolting in some small way. When I concentrate on dietary wholesomeness and commit to it, I feel amazing, considering all that they have thrown at me!

Tykerbers - remember:
*no grapefruit products
*no folic acid (it can be found in your multi-vits and b-complex... it can make the side-effects worse)
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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