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11-08-2007, 10:28 AM
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#1
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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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Trial Trastuzumab-MCC-DM1(One more on this trial)
After all kinds of tests the trial started on November the 5th of 2007. So far there is not much to it outside of the tests before the start. During the first infusion they took my blood pressure, pulse and temperature every 15 minutes. That was a little annoying but worth it.
They are looking for more candidates for this trial. Right now there are a hundred total people on this trial nationally and five in North Carolina.
One other thing they are looking at is that with the combination of the drug there is a possibility that there will not be heart damage. Further more, it's been easy to tolerate for me so far.
I will keep you gals up to date as it goes along.
__________________
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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11-08-2007, 06:17 PM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 589
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Good luck! Let's hope that you do great on it along with everyone else. Will be watching for your posts.
Eric
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11-09-2007, 09:46 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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I am so glad everything worked out good for you! I pray that this trial will go smoothly and kick butt! Thanks for doing this and letting us know how you will be feeling and doing. I love you my friend!
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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11-10-2007, 09:10 PM
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#4
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Member
Join Date: Nov 2007
Location: Minneapolis, MN
Posts: 20
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Lily,
I will starting this trail on the 12 of this month. Let's pray it kick's ass on this dam cancer! My prayers are with you!
Marsha/MPB
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11-10-2007, 09:41 PM
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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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Marsha good luck on the 12 I will thinking about you that day , I mean monday and I sure you are going to be OK too .so far is easy ...
__________________
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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11-10-2007, 10:52 PM
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#6
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Senior Member
Join Date: Sep 2005
Posts: 556
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My best wishes to Marsha and Lily and hoping this is a miracle drug. Please let us know how you are doing.
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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11-16-2007, 11:55 AM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Please keep us updated! You all are our newest pioneers and are paving the way for so many more behind you! Blessings and best wishes!
__________________
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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11-17-2007, 03:54 PM
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#8
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Senior Member
Join Date: Oct 2007
Posts: 47
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Lily,
This is the first that I've seen that you started this trial. My thoughts and prayers are with you (and Barbara H.) always. Please let us know how you are doing.
Patrice
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11-19-2007, 06:18 PM
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#9
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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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Thanks, Patrice ...I went to my Doc today for a blood drow and I got the results from last week results (just blood) and my liver enzimes are a little bit higher ...my is 65 and normal is 34 ...other then that is OK so far ...I never hav before no even when I have taxotere, carboplatin and herceptin and 4 tumors and now with the new drug this is one of the side effect ....today I have my echocardiogram and so far is OK .....my next ct scan,brain MRI is going to be on Dec 10 (except my conciense)they are going to check everything else ...so by Dec 14 I will got the results and My Doc going to ASCO to San Antonio he is going to have a conference there ... is not that much side effects like others drugs so get enroll and lets help to get this drugs quikly in the market for future options . next monday I will have my 2 infucion....thanks Sister for all the wishes and blessings
__________________
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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11-21-2007, 03:00 PM
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#10
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Senior Member
Join Date: Oct 2007
Posts: 47
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Lily (Marsha & Barbara H.), I'm thinking of you all, and will anxiously await Lily's scan results on the 10th. You'll all be in my prayers, especially tomorrow.
All my best, Patrice
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11-26-2007, 02:07 PM
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#11
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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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Hi, I went today to receive my 2nd infusion and it was much better then the 1st one ...my liver enzyme was normal again, the 2nd week was higher 2nd week normal thanks God !!! ( I guess I drink lot of water and tamarind juice) and my echo was OK ..also ...so lets see what is going to happen this 3 weeks ...for now I'm OK ....
__________________
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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11-27-2007, 09:19 AM
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#12
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Senior Member
Join Date: Nov 2007
Posts: 210
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keep us posted lily.. glad to hear you are feeling better after the second infusion
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12-01-2007, 06:47 PM
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#13
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Senior Member
Join Date: Oct 2007
Posts: 47
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Lily, I was so glad to hear yur recent reults! You keep going girl! You are in my thoughts and prayers every single day - and I look forward to hearing more positive news- you deserve it!
All my best, Patrice
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12-10-2007, 10:03 AM
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#14
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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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Sisters I will ask you for some prayers this week, because I will doing some test ct and MRI ...I will need that especially this week ...from that depend if I will still on this trial ......thanks and Love you all
__________________
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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12-10-2007, 12:48 PM
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#15
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Dear Lily,
You have mt thoughts and prayers extra ones for this week please let me know how you are doing when you can. I love you my freind! Tha cat Scan was today when will you get ther results? I am praying so hard for you!
Love Karen
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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12-10-2007, 03:09 PM
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#16
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Senior Member
Join Date: Sep 2005
Posts: 556
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Lily,
I am thinking of you and praying for clear tests.
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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12-10-2007, 04:09 PM
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#17
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Member
Join Date: Nov 2007
Location: Minneapolis, MN
Posts: 20
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Hi Lily,
I have prayed for you since we met, I know God will not fail us, he has plans for you and I. Hang in there sister and know we are all holding you in prayer. I had my second round and I still had it kick my butt. But I don't care as long as it is working.
hugs to you my friend.
__________________
MPB
IDC in 1996 Stage 3 Grade D 17 pos. nodes
2003 liver mets found HER2 Her/Taxol then did the first trail for Trykerb and Xelosa until 11-07
Six new tumors on neck will be starting the MCC_DM1 trail this week.
"Believe in miracles, and watch them happen!"
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12-10-2007, 07:50 PM
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#18
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Lily,
You are in my prayers every day but I'll say a special prayer this week that all goes well for you. Glad to hear the treatment is working for you
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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12-10-2007, 08:15 PM
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#19
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Senior Member
Join Date: Oct 2007
Posts: 47
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Lily,
You are always in my prayers, but I'm saying special ones for you that these tests results are exactly what you are looking for. Sending positive thoughts and love.
Patrice
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12-12-2007, 06:57 PM
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#20
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Lily, I will be keeping you in my prayers that your test come out with good results and you continue to do well with this trial. God Bless!
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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