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Old 06-23-2009, 11:07 PM   #1
Believe51
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Thumbs up ~Dana Farber At 4pm Today With Mighty Oak~

For those that do not know me well, I write with my fighting color! We will be seeing Dr Burstein today and I am packed with hope and ready to dismiss cancer from his brain. When the records were handed to me at OncoMan's I cried, I did not know that having those records handed to me would cause such a release. Dana Farber also called and told us we were all set, I cried then too. Looks like we are good to go, oh my, that must mean I have nothing to do but focus and emit positive energy for him all day (smiling).

To send prayers directly, we will be on the 9th floor, Breast Oncology (smiling). I will be the one with the crazy sneakers and the glimmer of hopefullness in her eyes. That quiet person holding tight to the records that hold the key and the list of options that carry hope. We will be there to claim back his life, the one cancer keeps trying to rob. No not today, we will leave with his life, his options and enough hope to travel the globe with. Sitting there will be just as much for him as for all of us! We will be there not just for the salvaging my husband's dismal outlook, but to break the rules once more. We will sit with sweaty palms as we beg for our miracle, for your miracle!

I am hopeful as much as this situation looks bad. I cannot lie to you all, I have read the reports and they are not good. Any other person would have burned those records, not us and neither would you. I have found that it is true, there is always hope. I am not sure when looking at the paperwork I can still see that hope, I think it is the fact that we continue to claim what is ours. My research reflects the hope in black and white. Ed has a race against time, I pray that he has enough time for science to help him.

So my 'lil Chickadees, that is my story and I am sticking to it (wink). I will not leave without more gifts of time, for him to come home with the inspiration to be courageous and wise enough to chose what is best for him. This is about his quality of life now and even if we can give him better QOL then I have done atleast part of my job.

If you would ask me what would you want our prayers to be I would reply this.....

......that Ed can obtain enough time to fairly fight with the options given.....that his QOL would be improved and if it is meant to be, that cancer take him systemically and not his precious brain. We cannot let cancer take his brain.

Thank you for helping me to be brave through this all. These roads have always been rocky but this time we need to get better traction. As we are sitting there and that twinkle in my eye is blinding, remember it is from having a part of you all in us. You are the toughest, most courageous and wonderous people we have ever met. You have allowed me to find the strength to search and destroy, the power to believe!!>>Marie
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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 06-24-2009, 01:43 AM   #2
Ellie F
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I read your posts each day and my heart goes out to you every time.Your struggle has been sooo hard and you are fighting so bravely.
I cannot offer you any advice but I know there are others who do this so well. What I do send you is my deepest prayers and heartfelt support that you both will receive a miracle today.
Love Ellie
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Old 06-24-2009, 01:51 AM   #3
Kavy
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Marie,
Sending special prayers that everything goes well at Dana Farber and that Dr. Burstein makes the right decision for Ed's treatment, and that he will have good news for you... and for us.
Love,
KarlaV.
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Old 06-24-2009, 05:22 AM   #4
Colleen007
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Good luck - you'll be in good hands with Dr. Burstein. I'll be thinking of you!

Colleen
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Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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Old 06-24-2009, 05:53 AM   #5
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I"m Talking to the Big Guy Right now

Marie and Ed,

I'm praying for both of you so hard and so much right now. Ed my dear man you have fought a long hard battle and Maire has been right there by your side day in and day out. I pray that you find peace and happiness. I pray for time so that science can fix your precious brain.

I'm telling God to sit beside you today as you sit on the 9th floor at DF, I pray that he holds your hands while you talk to the doctor.

With my heartfelt love, I pray for you!!!!!!!!

Randi
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Old 06-24-2009, 06:06 AM   #6
peachysue
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New to the site but want you both to know that my prayers and hopes are with both of you. You are obviously warriors so keep up the good fight!
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Old 06-24-2009, 06:15 AM   #7
Mary Anne in TX
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My prayers will be on the 9th floor with you. God bless you both as you step into this next adventure. luv ya bunches, ma
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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 06-24-2009, 06:24 AM   #8
Jackie07
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Marie,

I hope you are getting needed support there at the hospital. Travel safely and find time to rest. We'll be thinking of you and Ed.
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NICU 4.4 LB
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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
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1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
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Old 06-24-2009, 06:44 AM   #9
schoolteacher
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Marie and the Mighty Oak,

You two are my heroes. I will be praying today.

Amelia
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Old 06-24-2009, 07:47 AM   #10
Terri B
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Marie,

I wish I could be up there with you to give you a great big hug in person! Poor baby. Sending you and Ed some warm thoughts from the hot south! Prayer Warriors working up a sweat for you!
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Terri B.
46 yrs. young
Dx IDC 3/6/08
1.5 cm & .6 cm grade III, Stage IIA
es/pr- Her2+++, 9/9 richardson
Double Mast w/expanders 4-14-08
3/9 nodes positive.
additional excision rt breast 4-25-08
weekly T/H x 12 (6-2-08) Done!
FEC x4 (9-8-08) Last one 11-10-08!
Herceptin complete 8/10/09!!
33 RADS DONE 2/13/09!
rt. breast biopsy 3/20/09 .. B9!!
reconstruction complete!
DEEEEEEported on 5/19/10!!
almost 5 YEARS NED!!
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Old 06-24-2009, 08:38 AM   #11
lexigirl
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Dear Ed and Marie,

Saying prayers right now for the comfort of Jesus to be with you on the 9th floor at DF. As bleak as the records may look, we all know that the Might Oak as stood up to ca and kicked its butt. I believe that the right tx will improve Ed's quality of life and may even get him to NED.

I hope that you and Ed will feel all the hugs and prayers coming from all over. We care for you both very much.

Hugs and Prayers,
Lexi
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Old 06-24-2009, 09:50 AM   #12
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
Thank you for refueling me while reading this post. We are getting dressed and will be leaving shortly, I am armed and dangerous. So, I guess all that is left to say is that we are going to search in all of the corners for his treatment.

We are about to make history and hopefully be included in all them stray statistics that are not the norm. What we do today is for us all.

Uncharted waters but ready for the swim of our life. I will talk to you tonight and share even the things that may not help Ed but could help someone else.

And Peachysue, I welcome you and am touched that your first post was to me. I am looking forward to getting to know you and your story. Remember, I will be coming back with hope for us all and I wish that it will inspire your continued fight with the beast.

Love to all, you have made this experience as good as it can be considering the circumstances.>>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 06-24-2009, 09:55 AM   #13
Shobha
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Dear Marie and Ed,

Sending my deepest prayers for good news and hope for both of you at the 9th floor of Dana Faber. May God bless Ed with better quality of life and keep his brain and mind safe from any harm!

God bless you both with the healing touch.

love,
shobha
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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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Old 06-24-2009, 10:00 AM   #14
Soccermom
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My strength goes with you ,Ed and Marie~
Marcia
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Old 06-24-2009, 10:05 AM   #15
Faith in Him
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Marie,

In our hearts, we will all be on the 9th floor with you and Ed. I pray this morning that God will give you the peace to get through the day. That He will guide the doctor's to give you just the right answers and will fill you with more hope and encouragement.
I'll be on my knees again at 1:00 pm california time.
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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 06-24-2009, 10:13 AM   #16
alicem
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Now its my turn to have a "virtual" visit to Boston. I'll be there sitting on your shoulder, trying to remind you to take deep cleansing breaths. I pray for all you have asked us to pray for. In addition, I pray for you to have a sense of peace, calm and focus. I pray for clarity of mind so that you are able to make the best decision possible.

I also want to take this time to tell you that the name of Marie is very special to me. It is a family name - - the middle name of my grandmother, my mother, my sister, one of my daughter's and my niece. You wear the name PROUDLY, and serve it well!!!

Thinking of you all day,

Alice
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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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Old 06-24-2009, 12:03 PM   #17
Yorkiegirl
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Marie & Ed many, many prayers going out.
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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 06-24-2009, 12:26 PM   #18
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I'm with you as well

Marie,

I am right there in Boston with you, so is God holding your hand. I pray for peace and well being for both of you.

Randi
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Old 06-24-2009, 01:48 PM   #19
Sherryg683
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Sending you and Ed a big cyber hug and many prayers. You know you two are special to me. You are always so willing to help others...Ed is blessed to have you fighting for him..sherry
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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 06-24-2009, 02:20 PM   #20
WomanofSteel
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Marie, my prayers go out to you and Ed that all goes well in Boston.
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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