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10-26-2007, 05:36 AM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 589
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Survey: Need help
Hi all. Unfortunately Caryn had short success on Taxotere/herceptin and I'm in need of reasons to remain optomistic. I know there's a lot of good stuff out there but I can't bear the thought of losing her so my fears are winning out right now. Has anyone had long-term success with a chemo without the help of herceptin and tykerb after going through a bunch of chemo's? Herceptin and Tykerb haven't seemed to help her.
Thanks in advance.
Eric
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10-26-2007, 06:11 AM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Eric
Has she tried Avastin? It combined with Herceptin or Tykerb seems successful....I even have Taxol added, but I was thinking maybe Abraxane for your wife. Also what about the new trial drug Swanky is on....you can find it under her posts. My prayers are with you both....this disease is so relentless! Dont give up!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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10-26-2007, 08:14 AM
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#3
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi Eric
I don't have any answers to your questions. I am
bumping this up so some of the wise women warriors
who have been through the trenches can offer some
advice. I know there are other treatments out there
for you and your wife to try. Good luck and keep the
faith.......
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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10-26-2007, 08:16 AM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Eric, Sheila is right, there are more combinations and drugs to try. What did 2nd opinion say? I'm believing they'll find just the right combo for Caryn! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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10-26-2007, 09:56 AM
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#5
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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Eric how about this trastumuzumab-MCC-DM1 open label for met bc who progressed on herceptin therapy and there is More Information
Study ID Numbers: TDM4258g
Last Updated: September 24, 2007
Record first received: July 27, 2007
ClinicalTrials.gov Identifier: NCT00509769
Health Authority: United States: Food and Drug Administration
ClinicalTrials.gov processed this record on October 25, 2007
__________________
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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10-26-2007, 10:08 AM
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#6
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Senior Member
Join Date: Sep 2005
Posts: 556
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Eric,
I can understand your situation. We become so helpless sometimes. Caryn can try xeloda, which can be used for long time,Navelbine is there. Since she has success on gemzar won't the onc try again? I am thinking about you and the family. Please don't loose courage. I think something will be a magic bullet.
Julie
__________________
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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10-26-2007, 12:45 PM
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#7
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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just bumping this up
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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10-26-2007, 01:15 PM
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#8
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Eric, I'm back on Herceptin/Taxotere/Xeloda after 4 months of Tykerb/Abraxane which was briefly effective but then I had progression. The HTX combo is slowly shrinking the tumors in my axilla and chest wall.
Has your onc considered a triplet? Even though I had Taxol before, and also Xeloda, and experienced progression eventually, the triplet seems to be making a difference.
<3 Lolly
__________________
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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10-26-2007, 01:51 PM
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#9
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Recent new trial for HER2 mets
Eric -
I am so sorry to hear that Caryn is once again in the market for new drugs.
I know a woman in a trial here for a new drug - a big bag of pretty purple stuff called KOS-953. (Still a letter/number name.) She was heavily pretreated and has shown improvement. It is a weekly infusion and she comes from Montana.
Here is a link, and I am sure you can Google this drug and find out more.
http://www.fhcrc.org/patient/treatme...hKind=clinical
__________________
"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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10-26-2007, 05:46 PM
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#10
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Senior Member
Join Date: Sep 2005
Posts: 589
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Thank you all for your responses. Caryn spoke to the doc and his plan is to wait for her scans over the next 2 weeks. If the spot in her liver grew then he may consider RFA, freezing, injecting or heat. If it shrunk he may continue this chemo for one more time.
I'll try and respond to each of you...
Sheila: avastin is definitely an option although I'm a bit skepticle since I havent seen as dramatic results as with herceptin and tykerb
PinkGirl and MA: thank you
Lily: I am intrigued by the idea of trastumuzumab-MCC-DM1 but nervous since its still in phase 1. If her Onc suggested it I'd probably be both nervous and excited.
Julie: xeloda didnt work for her but navelbine and (I agree) gemzar should still be an option for her. How did you remember that she had success with that?????
Lolly: I like the idea of triples although my guess is her onc might be nervous about triple toxicity. Definitely something to discuss with him though.
Steph: interesting trial. Thank you. I'm thinking of you with the problem with your swelling. I hope Hickman can figure out how to rectify it for you. It sounds annoying and you've been through enough.
Thank you all, I don't know how well I could manage this crappy situation without all of you to lean on. Love to all...Eric
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10-27-2007, 07:05 AM
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#11
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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There are so many options out there Eric - don't lose hope. New drugs are being developed every day. I am hoping they can find just the perfect combo for her so that she can reach NED. Hang in there!
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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10-27-2007, 09:02 AM
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#12
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Eric
So sorry for Caryn having to go through this again but there are so many different combo's out there she can try. Of course, her onc will be the best to determine this and drugs she may have used in the past can now be used in combo with something Everyone is different and unique in how they will respond so unfortunately it becomes a trial and error.
I have been doing this now for 11 1/2 years straight on one type of chemo or another and each time I think, this is it, there is nothing left but then we find something different to combine. Thank goodness to research and new drugs arriving.
You are being smart in researching all of her possibilities which is the thing to do. I am sure she will find something that will keep her stable.
You both take care if you should have any questions that I might be able to help you with, pls do not hestitate to let me know. I am here for you both.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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10-27-2007, 10:38 AM
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#13
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I can't offer any help beyond what all of the other junior oncologists here have offered. We should all get honorary degrees, right? I totally agree Eric... I don't know what we would do without this amazing group. I think my doc is slowly becoming clued in to the fact that he has about 50 junior/assistant doctors whom he has never met... don't know how he feels about it, but Her2Support is well represented in my appointments with him!
__________________
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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10-27-2007, 11:28 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Eric,
I am on the Herceptin MCC DM1 phase 1 trial and it is very easily tolerated. I can't think of an easier drug to handle other than Herceptin alone. The only complication I have had is that it raises liver enzymes in some people. As a result, I had to forgo treatment this past week. Nevertheless, in just four weeks this has been a miracle drug for me. I had constant pain in my hip and couldn't sleep. I am now pain free and work full time teaching third grade. I am being treated at the Dana Farber.
Good luck,
Barbara H.
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10-27-2007, 12:02 PM
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#15
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Senior Member
Join Date: Sep 2005
Posts: 589
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Thanks all.
Barbara, I've been watching your postings and can't tell you how happy I am for you and all of us that you are having such a positive experience. Let's hope others benefit as well.
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10-28-2007, 10:12 PM
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#16
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I don't have anything else to offer but prayers and positive vibes. They are coming your way.
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10-29-2007, 05:49 PM
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#17
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Prayers to you and Caryn from California. There are so many combos still for her to try. I am entering year 4 without ever getting a break from chemo, but I am ok and I have learned that when I start to feel fearful, I become even more pro active, as you are doing. New drugs are entering the market with speed these days and there is much hope. Look toward the sun and know that all here love you and support you. Love, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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