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06-16-2009, 08:59 AM
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#1
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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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Mighty Oak's Oncology Appointment at 1:00 And We Are Not Leaving Without HOPE!!!~
Start out the post first with my orange fighting color and putting on my lucky green shoes!
Recap on what I have done in the last few days.
*MD Anderson is out. I may be able to get him into an unknown trial. From starting today it would be a 2 week window of acceptance, and again with an unknown drug. If he was accepted, an additional 8-10 weeks. This is too much of a chance and we do not have that long to take that big of a shot in the dark. It would also not do any service to Ed to be away from home and for his quality of life. We are totally okay with this.
*Dana Farber options, if any, will be discussed today at this appointment. I am sure that this is a study there in Phase 1. Either way, we know that there may be drugs that they may be able to get for him 'compassionately'. I think they will have some armor for us.
*WBR for a second time will be discussed on Thursday with Chief Radiology OncoMan on Thursday. The amount of time you get from this is about 3 months. If this is an option in Ed's eye, well then he may gain the time he needs to continue his battle. There are drugs that we can use for synergy that I will talk about too.
*Intrathecal Herceptin treatment will be discussed with our team. Herceptin was not as effective systemically as it was desired but who knows about doing it this way. If this works for Ed, I will feel hope for many others that this could work for them too. I am worried about a drug being directly injected into the brain but I have made friends with the brain and view it as an incredible organ.
*I have a list of drugs compiled. I will discuss the list with OncoMan today. I am not leaving without HOPE today. Look for my updated post tonight just in case I am not home yet....I could be looking for hope....and prayers.
*If we or Dana Farber decides that it is a good idea to come in and discuss drug strategies, we are there. If they are going to review his case and say they would need to see him to explore, no. I am going no where with him to look at him. Here are his records, you have seen them before, but now look. What do you think?
*He does not want to go to far away from home and I agree with this choice. He is frail and really enjoying life lately and needs to be at home. Of course, I would fly him anywhere. I sit idle for his next move. Talk about feeling helpless. I have stopped the pushing and urging but I have not stopped the options.
*If we can take a shot with drugs and cannot do a trial, I will try to get these medications to him. I will contact drug companies and self pay if I have to. I have cancelled our 3rd Cancerversary cruise to have funds to enjoy life today.
Believe's Summary: We must weigh any options vs. side effects and divide that with the time and quality of life he will have. He has had a rough journey and never once complained for anything more than pain. I cannot see him go through much more invasive treatments if he sleeps through the rest of his time. Time is not on our side right now and that seems to post the biggest problem.
I am going there today with HOPE and I will leave with more of it than I went in there with. I owe much of this hope and courage to go on to all of you. You are all such a big part of who I am since by loving you I have been able to find peace through this journey. Your inspiration and knowledge has driven me to places I never thought I could go. I am this person simply because you make me flourish the qualities I endure. I have always been this person but you have allowed me to blossom and grow into even a better person.You can see the real me because I am able to see the real you. Thanks for not just the ammo and information, but for teaching me how to fight. Today is the first day that I feel like a Warrior.
Now, I am going to go gather hope and I will take that hope back home, to all of you. I adore you all.>>Marie
__________________
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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06-16-2009, 09:38 AM
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#2
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Marie,
I will be thinking about you and the Mighty Oak. Let us know what happens today.
Amelia
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06-16-2009, 09:44 AM
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#3
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Senior Member
Join Date: Dec 2006
Posts: 415
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Thoughts, prayers, strength & courage to you!
There is always HOPE!
Keep the Faith~
Jessica
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06-16-2009, 09:47 AM
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#4
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Member
Join Date: Sep 2007
Location: Birmingham, Alabama
Posts: 21
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I am praying for stength for both of you and plenty of HOPE!
Regards-
Suzanne
__________________
Dx 8-24-2007
Stage IV with mets to liver
ER +/PR- HER2 +++
10 months TCH completed 5-08
Ooph 1-08
Bilateral Mastectomy 07-08
Currently on Herceptin and Aromasin
NED since 1-08
UW Vaccine Trial completed 5-09
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06-16-2009, 09:49 AM
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#5
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Marie,
We are with you and Ed in spirit and warrior mode today. I do pray that the Onc. will have some tx plans prepared to get Ed back to NED. It is possible. I BELIEVE!
Hugs and Prayers,
Lexi
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06-16-2009, 09:51 AM
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#6
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Hi Marie,
Praying hard for both of you. I can't tell you how incredibly brave Ed seems to be and I think he must derive that strength to carry on from you!
May god light up your path and fill you with hope and peace.
love,
shobha
__________________
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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06-16-2009, 09:55 AM
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#7
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Marie,
Just remember that while you are at your appointment, you will have all of us in you pocket - ready to do battle with you.
Love, Alice
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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06-16-2009, 09:56 AM
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#8
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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We are with you and Ed, Marie!
__________________
For Nicola
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06-16-2009, 10:22 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Those green shoes are powerful magic!!! Have some hope from me to take along with you!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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06-16-2009, 10:55 AM
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#10
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Zeloda,Marie???
http://www.asco.org/ASCOv2/Meetings/...stractID=31379
another option..
Methotrexate directly to the brain..
Hoping you leave the appointment with PLENTY of HOPE!!!
Hugs,Marcia
Last edited by Soccermom; 06-16-2009 at 02:57 PM..
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06-16-2009, 11:47 AM
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#11
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Marie,
Good luck at the appointment. I'm praying for a solution.
Best,
Joan
__________________
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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06-16-2009, 11:58 AM
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#12
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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There with you in spirit, strong warrior! 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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06-16-2009, 12:58 PM
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#13
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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God speed Ed and Marie.
Where there is life there is always hope...
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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06-16-2009, 01:10 PM
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#14
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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You two are amazing. While you fight for yourselves, you fight for us all, and I am grateful. Praying for good results.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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06-16-2009, 02:59 PM
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#15
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Senior Member
Join Date: May 2006
Posts: 3,142
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Mighty Oak's Oncology Appointment at 1:00 And We Are Not Leaving Without HOPE!!!~
Sending HOPE your way !!
By the way, you have been so through, but I don't remember if you considered finding a top notch neurosurgeon to go over the MRI with both of you and possibly offer some new and exciting suggestions?
One doc cannot know everything about everything, no matter how good we may think he or she may be. Sometimes we need to talk to other docs. They might just be able to fill in the blanks or offer something that the other docs didn't even know existed.
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06-16-2009, 05:12 PM
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#16
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Wonderful words & thoughts
Dear Marie -
While I was drinking my contrast for my CT scan, I was looking out over our beautiful Lake Union and into the "great beyond" thinking that you would be in your appt about that time.
Praying for some thunderstruck idea to hit your medical team for Mighty Oak. Since I was in my own cancer center which is such a powerful place, was HOPE-ing some extra brilliance would go your way.
I just keep coming back to my own case where my gamma/brain team was totally surprised that my lit up spot turned out to be NECROSIS. They said things like, "with your history and aggressive disease we had to think the gamma knife did not work." (!!!!)
Give the big guy a hug from me!
__________________
"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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06-16-2009, 05:29 PM
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#17
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Senior Member
Join Date: Oct 2007
Location: Scottsdale,AZ
Posts: 43
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Marie & Ed,
I have been praying that miracles will be happening for Ed very soon. I have really good feelings for you two!!!!
As I take much more away from everyone here than I have contributed (I still feel so new even after 2 yrs with BC), I am so grateful for this site. Everyone seems to lean on one another and feed off of one another and just are so sincere! This is the best place for support...and Marie, you are such a strong woman.
Take care, you both....angels are surrounding you!!!
__________________
Dx 5/1/07 (age 47), Left IDC
ER less than 5% +, PR -, HER+ FISH 5.4
Lumpectomy 5/07, Quadrantectomy 6/07
AC 7/07 -10/07, Liver mets dx 9/07 (liver bx)
Taxotere/Herceptin 10/07 -12/07
Herceptin only 1/08 - 7/08
Mastectomy 3/08, RADS 4/08 - 5/08
Brain MRI 5/08 clear
Gemzar/Herceptin 7/08-9/08
Lymphedema 8/08
RADS/Hyperthermia 10/08-11/08
Abraxane/Herceptin 12/08-3/09
Doxil/Herceptin 3/09 to 5/09
Xeloda/Tykerb 6/09-10/09
Navelbine/Xeloda/Tykerb 10/09-12/09
Tykerb/Herceptin 1/11/10
Tykerb/Herceptin/Ixempra 2/1/10
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