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03-16-2007, 05:47 PM
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#1
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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6 years and one day!!!
Wanted to share my anniversary with you hoping this gives some hope to those that may need it. Yesterday marked 6 years living with IBC! I think of these 6 years, this past year was the best. I have done traveling and lots of fun things and my quality of life is still very good. Yes, we are looking for a different treatment plan and hopefully, there will be those out there that will continue to work for a long time. I am saying a prayer for all of you on this board struggling to stay on top of this disease. It is a full time job being a patient advcate, doing research, being in tune with our body's signals and following heathy habits which is a struggle some days. Sending you all a big hug and blessings where ever you are in your journey. Also a big thank you for the support of this board. Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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03-16-2007, 06:00 PM
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#2
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Senior Member
Join Date: Dec 2005
Posts: 274
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Wishing you all the best
Hi Sandy,
I always read your posts and you are so uplifting. Congratulations on the six year anniversary. That is great news. You are always uplifting and I know that helps all of us during our "moments". Wishing you continued good health and all good things.
Sincerely,
Liz J.
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03-16-2007, 06:07 PM
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#3
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Congrats
Dear Sandy,
How wonderful to share your happy day!
Wishing you continued success....God Bless,
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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03-16-2007, 07:12 PM
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#4
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Senior Member
Join Date: Sep 2005
Posts: 589
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That's phenomenal Sandy! Celebrate and enjoy!!! Eric
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03-16-2007, 08:07 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Congrats Sandy!! You are an inspiration.
________
Maite cam
Last edited by sassy; 08-22-2011 at 09:12 AM..
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03-16-2007, 08:12 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Sandy,
Congrats and thanks for sharing this. It is so important for us to share good news and success stories. Thanks for all you do.
Many many more good years to you!
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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03-16-2007, 08:18 PM
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#7
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Sandy,
Congratulations on six years!!! It is always such an inspiration to hear such good news. It sure gives the rest of us something to look forward to.
__________________
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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03-16-2007, 08:41 PM
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#8
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Congrats Sandy. We all need to keep hearing good news! Bev
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03-16-2007, 08:53 PM
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#9
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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You GO Sandy! It is hard having to go through all this but you give us hope to keep plugging...and I always love seeing your posts because you look so dang cute in that pink vest...sherryg683
__________________
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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03-16-2007, 09:19 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: .
Posts: 211
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Dear Sandy
Congratulations and thanks for being there for all of us when we need it.
love
Linda
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03-16-2007, 10:36 PM
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#11
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Congratulations Sandy - I hope you do lots and lots of celebrating. And thanks to you for all you share on this board - it is truly an inspiration to me.
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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03-17-2007, 12:00 AM
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#12
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Sandy, Its so nice to hear from others that are years out from DX and doing well considering all they have been through. It gives us so much hope and reminds us all that we can do it too.
Big Congratulations on being six years out Sandy. I know it sure hasn't been easy for you, but you are a true inspiration to all of us. Thank you so much for sharing that with us. Your such a positive person and we need people like you. I am so glad your here and sure appreciate all the support you've given all of us. Your a very strong and awesome women that I really admire in case you didn't know that.  God bless you.
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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03-17-2007, 05:06 AM
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#13
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Sandy
Congratulations!!!! Put on the green shoes and kick up your heels....you are an inspiration.
__________________
"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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03-17-2007, 06:35 AM
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#14
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Sandy,
Congratulations !!
For those who are unaware, Sandy has been a part of the HER2 Support Group's San Antonio Breast Cancer Symposium Ambassador team for the last several years. Her tireless efforts on behalf of IBC parients on a local and national level are much to be admired.
Warmest Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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03-17-2007, 07:56 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Sandy
What an inspiration you are to all of us. Congratulations on this milestone. Are you wearing your green shoes today?
Love and Hugs to you
__________________
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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03-17-2007, 08:01 AM
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#16
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Sandy, I am so thrilled to hear the good news about you reaching your 6 year anniversary with ibc. In part you are able to celebrate this milestone because of the great advocate you are for yourself. Of course a great medical team helps as well! I am glad this past year was so good to you and I wish you many many good years in your long future ahead. You truly are an inspiration to so many.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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03-17-2007, 09:18 AM
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#17
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Congratulations Sandy!!! Noone deserves to be celebrating more than you do. Hope to continue to see your celebratory posts, 20 years plus one day sounds good to me!
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03-17-2007, 01:25 PM
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#18
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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 News!
How Exciting, Sandy! And your story does give me hope! thank you for sharing your special day with us! mary anne
__________________
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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03-17-2007, 04:52 PM
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#19
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Sandy wow..what an achievement and I also would like to send you best wishes and congratulations!
Tricia
__________________
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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03-17-2007, 04:56 PM
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#20
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Thanks for all your nice posts. To answer Becky's question about the green shoes-no I did not wear them! I wanted to but our weather was such that I did not leave the house all day. Stayed home cooked, and made phone calls. It snowed all night and than turned to rain and sleet. My husband spent all afternoon plowing heavy wet snow. I know I will wear them soon because I just love them and they are so comfortable. The weather will be warm here soon. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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