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Old 05-14-2008, 01:56 PM   #1
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
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~Mighty Oak's 10th and FINAL A/C Treatment!!

Friday marks Ed's 10th and final A/C treatment. Although he does need a holiday from almost a year and a half of chemo it is really kind of scary! I am sure we will adjust to things, after all what is more scary than a year and a half of treatment...??

This is a major accomplishment and even with the rocky roads and bleak outlooks, he is still here. Between prayer, science and the Warrior he is, he has made it out of the woods. Cautious remission until more testing, this is the farthest he has come.

This is such an inspiration to not only me but the world. One small step for man, a giant for mankind (did I say that right?). The medical industry remains studies on this man in two areas: Inflammatory breast cancer & Male breast cancer. Hopefully these studies can eventually help others in this tough and sometimes bleak catagory of cancer.

So for all those looking for a flaming smile from me after the few weeks I have had, here it is. I have always believed but this cancer is sometimes bigger than us all. I only wish anyone with IBC whom is searching this site for HOPE stumbles along to this post.

Thanks to this site and its members we have learned so much about the journey of breast cancer. Thanks to your support, we have survived. Love to Y'all>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 05-14-2008, 02:26 PM   #2
Sheila
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Congratulations Marie and Ed.....you two have so much to celebrate...what a great tribute you both are to each and every one of us...to every married coupe, and to anyone who has ever lost hope.....may Ed's chemo vacation be the beginning of his new life.
Congratulations to you both....this victory belongs to you both....admirable determination and love!!!!!!!!!
__________________
"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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Old 05-14-2008, 03:22 PM   #3
schoolteacher
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Marie,

I am very happy for you and Mighty Oak. You two have really inspired me since I began this journey.

Amelia
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Old 05-14-2008, 03:23 PM   #4
lilyecuadorian
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Marie and Ed your happiness and celebration is my too ...thanks for sharing
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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 05-14-2008, 04:40 PM   #5
chrisy
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Congratulations, Marie. I feel like I have been on this journey with you and Ed - and to be sure it has been many ups and downs so far. I'm so glad Ed is to a point where he (and you) can get a well needed chemo holiday. Recharge, relax and celebrate for a while.

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 05-14-2008, 05:28 PM   #6
lexigirl
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Congratulations Ed!! That's so great!! He is an inspiration to us all.

Hugs,
Lexi
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Old 05-14-2008, 06:52 PM   #7
Joan M
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Marie, A long trip for you and Ed but you've made it! Best, Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 05-14-2008, 07:21 PM   #8
kareneg
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Smile

Congradulations to you both. I love you!!!!!!!!!!!!

Marie I will call you soon.
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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 05-14-2008, 07:24 PM   #9
CindyE
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Oh what a wonderful day for your husband and you on Friday. Take care and enjoy the finish of chemo.
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Cindy

L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008

Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!



I am calling this my pink journey
Follow my journey into the pink at my blog here

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Old 05-14-2008, 08:00 PM   #10
Yorkiegirl
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Ed and Marie this is WONDERFUL to hear. Prayers will always continue for you all.

Yes you have come long way in a year and half.
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Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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Old 05-14-2008, 08:31 PM   #11
Sherryg683
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You are such a wonderful woman and you and your husband has been through so much. Through all this, you have been such a sourse of comfort to those of us on this board. I pray your husband has many years of remission, he and you deserve this. I remember some of your posts where it sounded like such an up hill battle and still here you are a year and half later. I am so glad his brain mets are clear, what a blessing..sherryg683
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Sherry

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 05-14-2008, 09:12 PM   #12
caya
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Congrats to Ed and you too Marie - I hope Ed has many years of remission. Ed certainly deserves a the break from chemo. Please go out and celebrate, eat chocolate!!

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 05-15-2008, 07:52 PM   #13
dhealey
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Congratulations Ed and Marie. You both deserve a break. You both have been such an inspiration on this site. 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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Old 05-15-2008, 08:04 PM   #14
Patty F
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Ed and Marie congratulations. Get those dancing shoes ready.
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10/15/07: Diagnosed at age 46 lymph node removal (2)
ER/PR - Her2 +++
11/07: Port Installed
11/07 - 1/08: AC
1/30/08: Right Mast Stage lllC
2/28/08: Start Taxol and Herceptin weekly.
5/15/08: Finished Taxol
8/12/08: Finished 33 Rads
1/29/09: Finished Herceptin
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Old 05-15-2008, 08:05 PM   #15
Becky
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I will be thinking of both of you tomorrow. It will be a day of great courage, faith, hope and above all belief that Saturday starts a new beginning for you.
__________________
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 05-15-2008, 08:18 PM   #16
duga35
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Smile

Congrats to the both of you!
You were both a huge inspiration to me and also a big help when you sent me all of the info about male breast cancer. Your kind and encouraging words really helped ease me when I first came here.
Tell Ed that I said congratulations, that I am overjoyed for him, and I'll continue to pray for the both you!!!

Doug
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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Old 05-16-2008, 07:17 AM   #17
Mary Anne in TX
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Marie and Ed!!!!! You're two unique special people! Working to make NED a done deal and helping so many others as you do it!!!! So glad you are YOU (2)!!! 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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Old 05-16-2008, 08:53 AM   #18
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Thumbs up Thanks Again To My Loves....

Yes, life will be a bit more normal for Ed and I. I have to say that we worked very hard to achieve some more time together. Although this is not over it has been quite a ride thus far. Third chemo regime, pelvis radiation, whole brain radiation, many sleepless nights. I anticipate watching him gain some energy enough to ride the brand new ergonomically correct (for back) bike that he was unable to use last spring.

After further testing and continued bloodwork, eventually we will get the word. We are coming out of the woods and into the sunlight.....just waiting to hear the word NED!! For now we will take 'cautious remission'.

Thanks for your support. Would not have gotten this far without you all!!>>Believe51


As Jackie Gleason would say........And awayyyyyy we goooo!!
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 05-16-2008, 09:06 AM   #19
Vi Schorpp
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Marie and Ed

Hallelujah!
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Old 05-16-2008, 11:23 AM   #20
chrisy
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Todays the day!

Although most people don't feel much like celebrating after an infusion of adria, I know you and Ed are thrilled to be at this point! We are all thrilled with you.

So happy for you, and I pray this is the beginning of a long long holiday.

love
Chris
__________________
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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