Keeping Your Mind Off of BC Fun things and posts that do not apply to BC |
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03-22-2008, 12:05 PM
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#1
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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TIPTOE & TEX in NORTH CAROLINA
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Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
Last edited by lilyecuadorian; 03-22-2008 at 12:08 PM..
Reason: forget a tip
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03-22-2008, 12:12 PM
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#2
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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here is 2 more
I will post more picture soon
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Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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03-22-2008, 12:42 PM
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#3
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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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Love You Lily!
WOW, Lily! You are amazing!! What a computer maven! And cartoonist!
Love, love, love the pictures. And the dialogue! How clever you are. And how sweet of you to take the time to share pictures of Tippy and Tex. YOU WIN THE PRIZE for best presentation, hands down!
Thank you so very much. (After I got out my magnifying glass I saw your next post saying to just click on the pic!) You have made my heart smile!
I am praying for you to dance with Ned. !!!!!!!!!!!!!!
Love, Andi
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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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03-22-2008, 12:53 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Thanks for sharing Lily. I didn't realize how much I missed Tip until I saw her pictures. I didn't have the pleasure of meeting Tex yet.
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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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03-22-2008, 01:22 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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And your little son is adorable!!
__________________
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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03-22-2008, 10:29 PM
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#6
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Awesome pictures! and so funny, too!
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03-22-2008, 10:41 PM
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#7
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Wow Lily, YOU SURE ARE TALENTED!!! Your son is adorable.....
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*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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03-23-2008, 01:25 AM
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#8
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Very funny and cute!!! LOVE THE PICTURES AND YOUR SON!!!
This so reminds me of my kids kindergarten class. My son had a first year teacher - Mrs. Weik. Everyone loved Mrs. Weik!! She had a thing for bears, so Boo boo bear was her thing. Each kid got to take home Boo boo for a week. We kept a diary and took pictures and added them to the book. Boo Boo came to our house just in time for a blizzard, so I made him little boots, a scarf and a coat. The following year, I made sure my daughter got Mrs. Weik just so we could have Boo Boo back again!!! Can't wait for my visit. It will be nice to have flying companions...
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03-23-2008, 10:55 AM
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#9
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Oh! Lily!! :-))))))
HILARIOUS!!! Those little critters are so cute! and having so much fun at your place with Max and your doggy!
Thanks Lily for a good warm laugh (my sides are aching! lol!)
All the best Sis
Blessings
Hermiracles
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2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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03-23-2008, 12:22 PM
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#10
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Looking forward to more pictures...Thanks.
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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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03-29-2008, 10:32 PM
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#11
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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some more pictures and mondays go to Stephn house
here is some more picts
(dont forget to click in each picture )
here is me with Tex and Tip having some secrets and coments about rush and other side effects on Tykerb .... monday in the morning are going to WA to Stephn House ...
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Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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03-30-2008, 04:01 AM
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#12
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Senior Member
Join Date: Mar 2007
Location: From Syracuse, NY but living in Tokyo, Japan for 26yrs
Posts: 132
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Thank you Lily for the great updates!
__________________
Kathy S in Tokyo (44)
11/2004 partial masectomy (clear margins) - ER/PR++ HER+++
12/2004 Tamoxifen
11/2005 Clavicle & neck lymph nodes mets
30 Days rads, 7 months CEF-T Chemo
6/2006 mid chemo lung mets oral toremifene
10/2006 changed hospitals
12/2006 Tamoxifen and monthly Zoladex
2/2007 Dramatic growth of mets! Stopped Tamoxifen and Zoladex
3/2007 Began weekly Herceptin
6/2007 Added weekly Taxol to regime
4/2008 More lung mets - stopped Taxol
5/2008 Xeloda - 3 weeks on 1 week off
8/2008 Got a port!
9/2008 Stopped Xeloda, started weekly Navelbine
12/2008 Tumor progression, stopped Navelbine
1/2009 Taxotere begins again, once in every three weekly Herceptin IVs
3/2009 Added Zometa pelvic bone met, lung tumors progressing, stopped Taxotere/Herceptin
4/10/2009 Whoa seizure! 6cm&3cm brain mets. craniotomy and gamma knife surgery 5/15/2009 Started Adria/Cyto stopped 9/15 due to progession. Brain mets back 10/28 surgery more gamma soon
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03-30-2008, 04:48 PM
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#13
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Lily - you and your family certainly showed Tip and Tex a great time! How am I going to top that??!!
Too bad they were not here last weekend for my nieces' ice skating birthday party. They won't be here for my herceptin appt on Wed either, but I will take them back to show around.
I will update the itinerary soon and add those who have offered a stay.
Guess the "kids" can help with the spring cleaning!
__________________
"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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03-30-2008, 10:09 PM
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#14
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Senior Member
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
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Hi ! You are one great kid!
& ! Thanks so much for sharing !
I just Love those pictures!
Bless you and your family!
Jo
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04-01-2008, 08:18 AM
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#15
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Senior Member
Join Date: Oct 2005
Location: Boise, Idaho
Posts: 758
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Thanks, Lily, for the fantastic sharing. I miss those two so much and eagerly look forward to any news about them. This time of sharing about TipToe & Tex has added so much to my life. Ain't that a hoot? Who would of thunk it? That a crazy, beautiful person in Canada could have started this insanity that has add so much to our existence. Pink Girl, we love you!!!
Love & hugs,
Marlys
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04-01-2008, 10:44 AM
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#16
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Thanks Lily for the great pics with the speech
bubbles. It looks like you and your family
enjoyed your visit with the kids.
Thanks Marlys. I am glad you are enjoying
the adventures of Tip and Tex. It was a very
fun project to start - thank you everyone
for keeping it going. I look forward to meeting
Tex this summer and being reunited with Tiptoe.
I wonder if she likes all those "summer drinks"?
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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