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11-09-2007, 11:27 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Breast cancer
Five years ago yesterday I had my final rads treatment in California </ST1 after completing chemotherapy, and drove due north with my husband. Herceptin wasn't available then, except off-label if you happened to know about it on your own and could find a doc who knew about it and was willing to write for it.
At the same time yesterday as my anniversary, my good friend across the continent from me died of HER2 breast cancer. Chemotherapy, radiation, and Herceptin hadn't worked for her from the start, and had only made her remaining time more difficult. We had talked about this many times. She is still very much with me, and I still have so much to learn from her.
In memory of my friend,
AlaskaAngel
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11-09-2007, 11:28 AM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 232
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Dear AA,
So sorry for your loss. You and your friend are in my prayers.
Karen
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11-09-2007, 11:40 AM
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#3
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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I know you have struggled long and hard with the difficulty you had
getting herceptin and the doubts you have on the adequacy of your treatment.
Wouldn't it be lovely if in return for informing breast cancer patients of their
IHC and gene array results (so they can relax about what treatments they did or didn't get and plan what treatments they may need in the future if their tumors have not changed dramatically since they presented), they would allow donation of portions of their tumors to a tumor bank on which to do any and all testing wished with fully consent and with full disclosure of their clinical course (how they actually did, what treatment they got etc)
I think this would speed up cancer research tremendously and many researchers I have spoken with tell me that the patient privacy laws have hindered their research tremendously!!!!
Yes, some her2+s who suffered with anthracyclines will be upset if they prove TOPOIIA negative, but think of all those her2-ER+PR+ patients who were treated with chemo when their likelihood of benefiting was far smaller. If you (Alaska Angel) ended up to be PTEN negative, you could rest assured that herceptin was unlikely to have helped in the first place.
More importantly it might give you ideas of pathways which might need to be blocked should it ever, God forbid, recur.
It is not that easy a story, as the multitude of pathways and negative and positive feedback mechanisms is overwhelming, but I have read that some oncologists hold to the theory that if you can block the three most important pathways or so early on...
This is a science in its infancy it seems. But hope (lack of regrets) keeps people going (also a hope that they might be somewhat prepared/armed with ammunition should things get worse)
Off my soapbox for now!
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11-09-2007, 11:48 AM
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#4
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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I am so sorry for your loss.
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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11-09-2007, 11:57 AM
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#5
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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AA
I am so sorry for your loss....it is very hard to lose a dear friend, especially from this disease...know that she is at peace smiling down on you.
__________________
"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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11-09-2007, 12:17 PM
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#6
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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thinking of you
My Dear AA,
I feel your heart break...never easy to say goodby to a loved one.
I am deeply sorry that you have lost your friend. I can only say that
time does help to ease the pain, her memory will remain in your heart,
to cherish.
Kindest Regards,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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11-09-2007, 12:19 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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AA,
First, congrats on your 5 year milestone!! That is just terrific!! I am happy that you are still doing great!
I am sorry to hear about the loss of your friend. This disease is so horrible. There is no rhyme or reason on who will recur or not. I am sorry that your friend never fully recovered from her txs. I am thankful for the herceptin and am blessed so far to suffer not more seriously.
Big hugs to you,
Lexi
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11-09-2007, 12:54 PM
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#8
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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AA,
I also congratulate you for your 5 years and yet I am also sorry with your loss.
Love
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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11-09-2007, 12:57 PM
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#9
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Alaska Angel, Please accept my sincere sympathy on the passing of your dear friend. My heart goes out to you. You have my deepest sympathy. I will be keeping you in my thoughts and prayers.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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11-09-2007, 03:14 PM
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#10
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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For Alaska Angel...
Dear AA,
My heartfelt sympathy for your loss. A few years ago, my dearest friend in the world, Sue, passed on. I understand your pain. Though I knew she was FINALLY at peace, without any more suffering, I could not imagine her not still being in this world with me. I believe we will meet again, in the Spiritual Realm, and that too gives me much comfort. I will rush in to arms shortly after arriving, I have no doubt. I do believe death is not the end of our story. That our divine Soul survives and continues to be... I often look up and talk to my Sue and listen for her response. I will love her eternally, as you AA, will no doubt love your friend forever.
Sue always used to tell me that what was happening to her had nothing to do with my outcome! Surely I prayed she would somehow survive, but she convinced me that our cancers were different. And that is likely what your friend would tell you, or perhaps has. My life was touched by a remarkable Soul who blessed me with her friendship. I hope you too, AA, will try to focus on how wonderful it was to have such a special person in your life, rather than concentrate on your loss. I have too many times had to go through these losses over the last 12 years. We do not know why we have survived, but we continue on, with the accumulation of all those beautiful Spirits that have touched us so deeply. In tribute to them, we carry on, not relinquishing a single day to utter sorrow, as each of them would no doubt wish. You must at the same time as you mourn, rejoice over your wonderful anniversary, AA. We mourn with you. We celebrate with you... This is what Life is all about. Sharing the burdens and the joys...
With love,
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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11-09-2007, 03:46 PM
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#11
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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I'm so sorry you lost your friend and know how tough it is to get over as I also lost a friend to this disease last year and still think of her most days.
I also want to congratulate you on your five year mark, thats wonderful and I wish you many more anniversary's but hopefully happier one's...
__________________
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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11-09-2007, 03:57 PM
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#12
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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So sorry for the loss of your dear friend. She will forever now be your guarding angel. Congrats on your 5 year anniversary. It has only been l year for me and I look up to those who have survived as you have. It gives me inspiration.
__________________
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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11-09-2007, 05:07 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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My sympathy to you in the loss of your friend. And congratulations to you on your five year mark!
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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11-09-2007, 06:42 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Dear AA
It is difficult to lose any friend but more so when it is someone who battled a disease in which you had and are winning the battle. I am very sorry for the loss of your friend but I am very glad you are here and are able to be my friend.
I remember when I was first diagnosed, I read Susan Love's Breast Book. The end of the book deals with metastatic disease. Dr. Love commented that she had 2 patients. One (statistically) should never have done poorly but did and the other was Stage 4 from the beginning but did wonderfully, beating the disease for many years and then passed away from something else. That is the nature of cancer. Same treatments or more and one does well and another doesn't. As Lani said quite well, one day we will know much more. Until then, we can cherish the angels and the survivors because both teach us humility and give knowledge in different ways.
I am thinking about you tonight in different ways too, with great joy and in sympathy.
__________________
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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11-09-2007, 07:09 PM
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#15
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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AA, Sorry about your friend. I can't wait il they find a way to beat this thing. BB
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11-09-2007, 07:29 PM
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#16
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Dear Alaska Angel....
Sorry to hear about your friend, how ironic the timing. bummer. Thinking about you more lately because the apples are ready at Apple Hill..........another season of apples for you and me.....not for your friend or the one I lost (started chemo with me) - who knows how long or why or what......heck, I'm just so glad to be here for however long!
Love to you,
Donna
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11-09-2007, 07:30 PM
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#17
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Senior Member
Join Date: Dec 2006
Posts: 136
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Becky -
I don't know how you do it but you always have a way with words in any situation----regardless of the post.
AA---your friend wants you to win this fight for you and her. Keep on keeping on.
__________________
Debra
Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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11-09-2007, 10:19 PM
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#18
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Senior Member
Join Date: Sep 2005
Posts: 208
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Dear Alaska Angel, So sorry for the loss of your friend. But I know you will always have her in your heart. Peace, and love, Diane
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11-09-2007, 11:25 PM
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#19
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I am so sorry about the loss of your friend. I know it must be heartwrenching. I will be praying for you and her family.
Congratulations on your 5 year anniversary, I am just sorry that the events happened on the same day.
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11-10-2007, 01:00 AM
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#20
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Alaska Angel
I am sorry if I sounded callous by discussing your regrets regarding your treatment without commiserating regarding the loss of your friend. It was just the way you phrased/introduced your friend which was so tied in to the fact that you felt denied herceptin treatment at that time.
I am sure you shared much, much more than a disease with your friend and that this loss has hit you hard.
Becky put it well..cherish both the Angels and the survivors. Isn't that what your friend would want you to do?
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