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Old 11-04-2007, 02:37 PM   #1
madubois63
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another wall...

On one hand, yesterday was my one year birthday/anniversary of the bone marrow transplant. I am very happy to be here and to have the transplant be considered a success. On the other hand, I received my reports back from my bone and PET scan. The bone scan is clean - yeah!! But, the PET showed 2 new spots on my right lung that are highly consistant with malignancy. The spots are 1.4 x 1.4 cm and 2.9 x 2.6. I have already seen my leukemia onc and bc onc. Tomorrow, I will see my thoracic surgeon to schedule a biopsy. The surgeon will also drain the plural effusion in my right lung that has gotten bigger. I've lived with it, and it hasn't been a problem; but I know he will want to drain and seal the lung again. I have refused to have it drained over the last 3 years (since the first time it was drained/sealed) because they have to collapse the lung. My body has been ravaged enough, and I did not want to chance infection or damaging the lung even further. Besides mets (probable), I've been told the spots could be from an infection (please), a new cancer (ugh - God forbid) or scar (not likely). If it is bc mets, my bc onc will treat me with hormonals until that doesn't work anymore, then go to chemo. If all else fails, my leukemia onc suggested giving me host verses graft disease (again) so that it will become host verses disease and my new immune system will kill off the bc. This can be very dangerous and kill me - great option huh?? So what have I learned this week?? My leukemia onc is very gloom and doom (but I knew that already), but he is smart and thinking ahead. My bc onc and nurse practitioner are the greatest people in the world. They love me and are both upset but not freaking out over this. My onc didn't want to tell me...he says if this is bc then there are plenty of treatment plans to choose from. I have the best family and friends a person can ask for. My friend Liz is just awesome. I don't know if I would have survived without her these past 3 years. So, once again I ask for your prayers. I'll know when the biopsy will be done tomorrow. It may be out-patient (easy), or in-patient (hard). We all know it will be the latter. I usually don't do things the easy way...
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 11-04-2007, 03:02 PM   #2
Audrey
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Oh, Maryann, sorry to read you've got more possible mets to deal with--after all you've been through already...I will keep you in my prayers and hope for good news from your biopsy results. I'm glad to know that you have a wonderful support system in place to help you through this--you know we're all pulling for you here, too- you're such an inspiration/warrior woman, and you always keep your sense of humor and gratefulness no matter what life throws at you.
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Audrey

diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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Old 11-04-2007, 03:04 PM   #3
Patrice
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Maryann,

I'm praying that those spots are from an infection. You have proven over and over how incredibly strong you are - it makes me so sad and angry to think that you might have to take on yet another battle. I know you'll win it if you have to - just don't want you to think about it for even one second.

All my thoughts and prayers go out to you, Patrice
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Old 11-04-2007, 03:21 PM   #4
Faith in Him
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Oh Maryann,

I'm sad to hear your news. Please know that you will be in my daily prayers. I have always been impressed by your strength and courage and today I am impressed again. You are an amazing women and I'm believing that you will beat this back once more.

Hugs.
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 11-04-2007, 03:26 PM   #5
hutchibk
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You could possibly be one of the strongest people I have ever encountered! All I can say is WOW, and I am in awe of you and your journey. Prayers, prayers, prayers for you and your loved ones.
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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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Old 11-04-2007, 03:41 PM   #6
Barbara H.
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Hi Maryann,
I'm so sorry to hear this news. You will be in my thoughts tomorrow. Hang in there. There are new easier treatments coming all the time. The trial I am on is very easy to tolerate and it is working for me.
Best regards,
Barbara H.
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Old 11-04-2007, 03:44 PM   #7
kareneg
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Red face

Dear Maryann,

I am praying for infection, infection, infection! Whatever this brings I know that you will be ok. You are an amazingly strong women and I admire you so much. All my love, prayers and thoughts are with you. I hate cancer so much! All my best my friend.
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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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Old 11-04-2007, 03:45 PM   #8
Mary Anne in TX
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Hi Maryann! Huge hugs and prayers coming your way! You are strong, smart, and the bestest warrior ever, but I hate that you even have to do the biopsy! I'm praying for a huge miracle, that its the least pain of the options! I'm believing for ya, girl! Tons of love, mary anne
__________________
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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Old 11-04-2007, 03:47 PM   #9
Julie2
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Thinking of you Maryann and hoping its nothing, but in case it is something I know you can beat it easily. Wishing you all the best.

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 11-04-2007, 04:13 PM   #10
sassy
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Maryanne,

Seems strange to pray for infection---but I surely will. You are a strong, determined, beautiful person who is a constant inspiration to many of us. Keeping you at the forefront of my prayers.
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 11-04-2007, 04:20 PM   #11
Les
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thank you Maryann

I'm sorry that you have had to deal with sooooooooooo much, thank you for sharing you are such an inspiration to me to stay positive and fight. I will pray for good news for you this week. God bless you Leslie
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Old 11-04-2007, 04:37 PM   #12
Mary Jo
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Dear Sweet Maryann,

I send up prayers for you and a heart that is full of encouragement and love for you. I'm truly sorry you have to encounter yet another "wall" and pray that the "wall" will come tumbling down and there will only be brightness on the other side.

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 11-04-2007, 04:57 PM   #13
Mgarr
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I'll keep the prayers & good thoughts coming.
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Mary


Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson

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Old 11-04-2007, 05:23 PM   #14
dhealey
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Posts: 576
Sending you positive thoughts and buckets of prayers. You are an amazingly strong woman. You can beat this. I loved your Halloween essay by the way. I could realate. Hang in there, we are all here for the long haul.
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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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Old 11-04-2007, 06:30 PM   #15
Esther
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Maryann, so sorry that you are facing a new challenge, but I am sure that you will rise to meet it yet again and deal with this.

You will be in thoughts and prayers as you continue to follow up on this situation.
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Old 11-04-2007, 06:47 PM   #16
lilyecuadorian
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Dear Maryann ..I will thinking about you tomorrow on my Doc infucion room ...tomorrow I will receive my first treatment from the same trial that our sister Barbara H is doing too ...I will need to much of prayers too .. but I hope so much that is just a beatyfull infection only ....for you tomorow but if is not ..there is many many drogs ...you know that girl !!!!
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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 11-04-2007, 07:04 PM   #17
chrisy
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Good heavens mary ann. you are one mighty warrior woman. I think of you all the time anyway, tonight I'll be hoping you learn tommorrow that this is to be a very minor skirmish.

hang in there

much love
Chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 11-04-2007, 07:16 PM   #18
Becky
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Awww Maryann

Why can't you just be left alone for 40 or 50 years now. You've gone through more than anyone ever deserves to and then some.

I will be praying for you and thinking about you.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 11-04-2007, 08:23 PM   #19
Jean
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Maryann,
Gee'ss, I wish you did not have to go through this. I will be saying my special prayers to the green lady for you...

Sending you big hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 11-04-2007, 08:47 PM   #20
jones7676
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So sorry to hear your news...just the waiting to see what will happen is hard enough. I hope whatever it is, they just take care of it in just the right way. Hang in there and stay strong. We are all here to support you.
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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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