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Old 03-11-2008, 12:13 PM   #1
Believe51
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Arrow ~A New England Get Together~Let's Do It!!

Hello friends. Wanted to try to start getting thoughts together so some of us can meet this spring or summer. I would love to see as many of us meet as possible. I will try to organize this to suit as many schedules as I can. If lodging is an issue with someone who may not come from the immediate area I can offer my bed to them. Even if you do come from the area I am willing to offer a happy place to bed down.

I am not sure when the second spa trip is planned or even still on, so this will be one thing that we may have to work around for me. If it is still on I know I will have to go, I am waiting with utmost anticipation and really hope that a spa trip is in my future.

I do know that Kareng and Mighty Oak are working out issues and concentrating on heading towards NED. If we could accommodate Karen and maybe head towards her way I am confident that if feeling better she will be handing out hugs to us all.

I can promise if we chose to go to....let's say: 'The Cheesecake Factory' (Sheila..LOL) that I WILL BE GORGING MYSELF ON 'CHEESECAKE'.

Let's see what we can come up with My Warriors. Please post if you are interested in organizing this with me. Even if we get together to just enjoy the air and unique conversation I want you all to know I am yearning for this.

And if not, some of us live so close to one another that we should be able to do one on ones if need be. So here is a shout out to East Coast Family Members to make one of my dreams come true. Kareng, Hazel Joyce, BarbaraH, the other Marie in RI....oh I could keep going on and on. Comma-n and join the party. Suggestions for this adventure are appreciated also.
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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 03-11-2008, 01:36 PM   #2
Sheila
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Marie
This is such a great idea...wished I lived closer. The Illinois group is meeting again this Sunday....this time at the ClubHouse in Oakbrook...it was a great time last time, a special bond to meet one on one. I hope you get a great response!!!!
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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 03-11-2008, 04:56 PM   #3
Barbara H.
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I think it would be great to have a New England get together. Weekends would be best for me since I work during the week.
Thanks,
Barbara H.
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Old 03-11-2008, 05:44 PM   #4
Hazel Joyce
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Count me in, Marie! I'd enjoy a face-to-face meeting with the members of our region!
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IDC Stage IIIA
Diagnosed Nov 2006 (routine mammogram), age 51
Lumpectomy, lymph node dissection Dec 2006
3 cm tumor, 8 cancerous lymph nodes
Grade 3, ER/PR -, HER-2/neu +++ (by FISH, average 20 copies per cell)
A/C x 4, Taxol x 12, Herceptin x 47 weeks
35 radiation treatments
Completed treatment on April 3, 2008
Chest port removed October 2009
11 years since diagnosis NED
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Old 03-11-2008, 07:32 PM   #5
Karen W
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Let me know when and if I am in Boston to visit my friends, maybe I can attend, too.

Karen
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Old 03-11-2008, 07:49 PM   #6
atdec05
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I'm from the Boston area and would love to meet up with other members of the board. I'm not as active (on the board) as some of the women here, but would love to get together. I could also help coordinate.

- Anna
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- Anna

Stage I - DX 9/2005
ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis -
start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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Old 03-12-2008, 02:04 PM   #7
Believe51
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Talking Only ME....

BUMPING THIS UP>>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 03-12-2008, 02:49 PM   #8
atdec05
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Mighty Oak update?

Hi Believe,

Is your husband still going to Dana-Farber? That's where I went.

- Anna
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- Anna

Stage I - DX 9/2005
ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis -
start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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Old 03-12-2008, 03:03 PM   #9
Joe
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Depending on the amount of Maine Lobsters and Ipswitch clams available, Christine and I may be lured to visit New England.

Regards
Joe
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Old 03-12-2008, 07:40 PM   #10
Joan M
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Hi Marie, Great idea. I'm in NYC (Staten Island, actually, the "forgotten borough") and I'd love to drive up to New England for a get together. I work during the week so the weekend would be the best for me. 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 03-13-2008, 07:21 PM   #11
kareneg
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Smile

I will be there. What a wonderful idea.
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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 03-13-2008, 08:58 PM   #12
karenfritzohare
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I read often, but am not a big poster.
I live in Western Massachusetts and would love to try to get together. K
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Old 03-14-2008, 05:37 PM   #13
Becky
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Keep me in the loop too as my daughter lives in Providence and I live in NJ. Also, for work, I can sometimes be just about anywhere.
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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 03-14-2008, 09:11 PM   #14
Carol Carlson
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I live in Southboriugh, Mass. which is just west of Framingham . A New England get-togther would be great. Keep mt posted.
Carol
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Old 03-17-2008, 03:58 PM   #15
Believe51
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Thumbs up Just a couple of things...

First of all I am really excited about this get together. So far some of the major requests seem to be weekends and we must arrange it so that there will be plenty of Maine lobsters and Ipswitch clams to bribe Joe & Christine with! LOL..hehehe!

Becky, I will keep you in mind especially because our last plans to meet never materialized and with patience I knew there would be another chance to steal a hug.

Kareneg, I wish this was a secret but I still have a Christmas gift here for you and the little one. Oww, that should be written under "Most Embarrassing Moments".....(smiling)

Joan M....I am touched that you would consider coming from New York to visit with us all. That goes for Joe & Christine also, truely moving! What touches me also is our 'shy ones' that are going to try to meet with us all. This makes my heart sing My Friends.....(in my mind only 'cause really I am tone-deaf)

Most of us seem to be very close to one another so this should run very smooth. There are also others that live in the area and just may have missed the post. This will all come together nicely and will be a chance to do this again because we are so close.

And Anna, Ed still works with Dana Farber in conjunction with one of the top Oncologists in Rhode Island. He is also allowing them to study him as a Male Breast Cancer patient w/Inflammatory BC. There appears to be only one other living man with IBC and he lives in Lebanon. Hope we can someday help others with any information we can supply.

Before I go my message center is full (yes...200 messages) and I will be aiming to clean it tomorrow. Please do not PM me until then, I would hate for you to write a PM that you cannot send. Or use my Yahoo e-mail, after this post I will update my address for you. I cannot wait.

Talk soon My Loves>>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 03-18-2008, 09:02 AM   #16
Colleen007
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I am also a "lurker", but would love to meet up if the timing is right (I am in Franklin, MA). With my 3 week on/1 week off treatment schedule, we do the best we can to make the most of the "off" weeks and have our calendar filled pretty far in advance. Pick the date/time/place and if my calendar is open, I would love to join all of you.
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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.

Last edited by Colleen007; 03-18-2008 at 09:03 AM.. Reason: spelling
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Old 03-19-2008, 03:55 PM   #17
madubois63
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If the drive is not too bad, I'd love to try and make the get together. I'm on Long Island, but have been known to drive most anywhere for a good concert. This would great!!!
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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 03-19-2008, 05:41 PM   #18
Mary Jo
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I'm in Wisconsin so can't come BUT would love too - so instead I will be with you in spirit. Has to be good enough for me I guess.

Mary Jo
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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 04-14-2008, 11:50 AM   #19
Believe51
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Posts: 2,999
Thumbs up 'ello.....

Wanted to bump this up so we can start getting things in order. Remember, Maine Lobsters and Ipswitch Clams for Joe & Christine!!

Let's get started>>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 04-14-2008, 12:37 PM   #20
MJo
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I'm down here in Delaware, but I used to live in Connecticut, so I know the way to Rhode Island. Might be able to make a weekend.
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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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