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01-19-2009, 09:01 AM
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#1
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Time for M D Anderson IBC
I have made my decision, I will go. I talked with their contact person yesterday and I will have to go there to get considered for any of their clinical trials.
Now I will research which IBC specialist to ask for.
Any Ideas?
I love snow as I watching it fall, fall, falling to blanket my world outside my window. God is good!!
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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01-19-2009, 10:07 AM
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#2
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Alice, I am so happy you are going there! That is the one place that seems to have the most research on IBC. I have IBC also and am nearing the end of treatment options. I don't know of the Dr's there, but i assume they have excellent Oncs as well as staff. I wish you the very best and will pray for you to get into a trial that will knock the socks off IBC! Let us know how you're doing. 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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01-19-2009, 10:27 AM
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#3
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Senior Member
Join Date: Jun 2007
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
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Alice, I will keep you in thoughts as you go to MD Anderson to grab the ammo you will need to go into combat for IBC. Not only will you be helping Midwest Alice, you will be helping others who are or will be walking in those shoes. May strides Alice, walk slow and breathe. I have been trying to follow your journey so please post with regular updates when you are feeling up to it. We will be watching you and praying for your best. Best of luck!!>>Believe51
__________________
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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01-19-2009, 10:32 AM
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#4
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Good luck Alice - I hope and pray that MD Anderson's team can kick that IBC to the curb!!
all the best
caya
__________________
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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01-19-2009, 10:41 AM
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#5
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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My prayers are with you, Alice! MD Anderson Team has the most extensive knowledge of IBC. I am sure they will find a way to clobber IBC.
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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01-19-2009, 10:53 AM
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#6
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Alice,
I am happy that you are going to MD Anderson. My prayers will be with you.
Amelia
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01-19-2009, 11:26 AM
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#7
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Alice, one of the ladies I know on another forum went there for a second opinion last year and is doing great. Her own onc said there was nothing he could do but they started her on xeloda/ixempra and although the treatment is tough her scans are showing great shrinkage so far.
If you'd like me to mail her to ask for a name just let me know and good luck!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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01-19-2009, 11:37 AM
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#8
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Senior Member
Join Date: Oct 2005
Posts: 823
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I have heard wonderful things about
Massimo Cristofanilli, M.D., at M.D. Anderson in Houston, Texas.
He is a IBC Specialist.
__________________
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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01-19-2009, 02:05 PM
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#9
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Thanks for responses, Here is more detail on my bio.
My breast rash had gone away by time of dx.This is not very common.
.
Before treatment CT/PET:Showed shadow on my spine, gone on 2nd. We thought it was a shadow, it may or may not have been.
My second CT/PET was after first-line treatment: My onc is almost sure the ? on my hips and pelvis will turn out to be bone growth. I think any change in April scan will answer that.
The great news from my 2nd is all organs looked clear and no sign of cancer around tumor site before radiation. What a blessing of healing!
So at this point I research.
I was turned down for a vaccine study at U of Washington  because of low muga scores, 53,43,48. My onc and Doc at u of w both agree my heart would be fine, its an FDA regulation for their study. I have found 2 or 3 vaccine studies for reoccuring cancer that have muga requirements <= 45%
Improve my muga: Join a gym. I am going to two gyms at 5:30 AM to see who has swimming lanes open. Im a morning person. I also baught my co-q10. My goal is to bring my muga above 50% What ever the out come I know my body and mind will feel better the more active I am.
I want to get in the system at the new IBC clinic at M D Anderson and see what tirals will be coming out. I want to sell a case for below adv mugas in trials. Also vaccines trials for us while on Herceptin.(like u of W trial)
I continue on my journey.
I am thinking about going on a mission trip in July. I will go with my church to Germany for 10 days and teach English to teenagers. (I'm a teacher)I have to let them know if I'm interested next week. Both my kids voted yes!! I am waiting on my onc vote, I think he will vote yes too!!! If I have a change in treatment I can do it before I go or when I get back. I vote yes!! Now it is just a matter of being excepted on the team. Please pray for Gods will. No worry, if this is not the right plan another will turn up.
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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02-07-2009, 03:18 PM
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#10
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Hi Everyone,
I flew out ahead of an ice storm here in the Midwest and spend 9 days at M D Anderson in Texas. Here is a up date.
I saw Dr. Cristofanilli who specializes in Inflammatory Breast Cancer
at MD Anderson He is the head of the first IBC clinic in the world.
I received good news from my PET,BONE SCAN,CHEST X-RAY AND
BLOOD WORK. 40% of IBC patients have metastasized at
the time of diagnosis. We had figured mine was in my spine. The bone scan
confirmed treated mets in the spine. I am NED So my treatments are working on the cancer and I have
no active cancer in my body.
I will continue to see my onc in town and will continue every
three weeks injections of Herceptin for an unknown length of time (years)
and now they will add Zometa to strengthen my bones. My onc is awesome. In Oct. when my heart ejection fraction
dropped too low to continue Herceptin he put me on a heart drug to bring it
up. I will be working on bring up my heart score (muga) by
exercising and making sure my cpap in working correctly.
I will be back at MD Anderson in April for a brain MRI. This type of cancer
has shown a trend to metastasize to the brain without symptoms at about a
year out. Herceptin doesn't cross the blood brain barrier so we will take a
look and go after them if they are there.
My friend Karen traveled here with me. She is a retired nurse so she
likes hospitals and this place is amazing. She has been great support for me
and we have found out we are well suited traveling partners. We are talking
about taking a trip out west or to the Holy Land.
I have much to be thankful for and continue to be amazed by Gods plan for
me.
1 Corinthians 10:13 "No temptation has seized you except what is common to
man. And God is faithful; he will not let you be tempted beyond what you can
bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
Thanks to everyone for your posting. I learn so much for all of you. We are such a supporting group. And a big hug and thanks to Vickie H. for your strength and the love you have showered on me.
Keeping the faith,
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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02-07-2009, 04:46 PM
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#11
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Senior Member
Join Date: May 2006
Posts: 3,142
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Time for M D Anderson IBC
M D Anderson is a great idea !! You go girl !!
Best of luck, good health and don't forget to keep putting one foot in front of the other.
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02-07-2009, 06:31 PM
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#12
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Alice,
I am so happy that you are getting such great care. Awesome news that NED is sticking around. I have many times thought of being seen at MD Anderson. I have Kaiser health insurance, so I think it would be an out of pocket expense. I have heard that their facility is really great.
Lexi
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02-07-2009, 07:30 PM
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#13
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Awson news. Thanks for posting.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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02-07-2009, 08:23 PM
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#14
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Senior Member
Join Date: Oct 2005
Posts: 823
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Alice so glad to hear the good news.
Dr. Cristofanilli was the one I posted about to you. I have heard WONDERFUL things about him. I'm so glad you were able to see him.
__________________
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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02-09-2009, 05:19 AM
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#15
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Alice,
This is great news. I know going to MD Anderson has helped to give you some peace of mind.
God Bless You, and I hope you have a great day.
Amelia
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