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01-02-2007, 08:00 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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Tykerb/Xeloda update!
I wanted to update everyone on how it is working on my skin mets. I can honestly say my skin mets appear to be all gone. No evidence of anything going on in the chest area. I am so happy with the results. It is a great way for me to start out the new year! Also I am in Destin, Florida and am loving it! I hope this shows everyone how good my quality of life is almost 6 years with IBC. We spent 4 days driving down from Maine! I am experiencing some numbness in my hands but no cracks or peeling. I had a few at first but I use lots of foot lotion as it seems to work better then any hand lotion I have tried. I do get tired at the end of the second week of the Xeloda and have almost no appetite but that is about it. For the most part it is an easy treatment just have to plan a schedule and make sure you take it on time etc. I hope this will encourage others to give it a try if their oncologist agrees to it. Wishing you all dealing with skin mets to find the right treatment as each one of us is so different. Praying for a healthy 2007 for each one on this board. 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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01-02-2007, 08:24 PM
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#2
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Senior Member
Join Date: Dec 2005
Location: Illinois
Posts: 327
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GREAT NEWS! I see how you have been struggling with them since Oct 2002!!! WOW! Treatment FINALLY kicked in! CONGRATS!
__________________
Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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01-03-2007, 02:15 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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Congrats!
Hi Sandy
I am really pleased for you.
Jackie
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01-03-2007, 06:30 AM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Sandy
So glad to know this is working for you...lucky you being in Destin...what a great place....I love Seaside the best along the coast....tiny little colorful houses, white sands and lots of Dolphins to watch....I too have found foot cream works better on my Xeloda hands....they were better than ever after I returned from San Antonio....probably not having them in water for dishes etc helped alot....you are showing us all that history is rewritten in this disease....may this combo continue to keep all at bay for you....enjoy the sun and sand....we are all jealous!
__________________
"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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01-03-2007, 09:48 AM
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#5
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Sandy - I'm so glad your treatments are working for you. What a wonderful way to begin the new year. Enjoy the sun and warm temps!
__________________
Andi
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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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01-03-2007, 12:17 PM
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#6
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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love it!
Thank you for the encouraging update and WOO HOO! I'm so happy for you-enjoy Florida!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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01-03-2007, 10:10 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Dear Sandy...woohoo for you!!!!
I am so happy to hear good news!
If you want to do a little sightseeing Baytowne is really neat...also Watercolours and Seaside...enjoy,enjoy!
Marcia
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01-05-2007, 05:24 PM
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#8
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Senior Member
Join Date: Nov 2005
Location: Colorado
Posts: 76
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Great news Sandy...........congratulations!!! Enjoy warm, sunny Florida.
Karen
__________________
Karen Raines Hunt
Dx April 2005 at age 46
stage 3A, very large (12cm) tumor
2 positive axillary lymph nodes
ER+/PR+, Her 2 +++
Bilateral mastectomy, radiation, reconstruction, A/C, Taxol, Herceptin, Tamoxifen, Aromasin
5 yrs since diagnosis and NED
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01-05-2007, 07:52 PM
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#9
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Great news Sandy. Keep up the good work and enjoy your time in Florida.
__________________
~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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01-05-2007, 08:25 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Its great how well you are responding. Have fun in the sun.
Big hugs for you from me.
__________________
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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01-07-2007, 01:29 PM
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#11
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Member
Join Date: Jul 2006
Location: San Antonio, TX/Germany
Posts: 19
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Sandy, that's wonderful news. I am so glad you're having a time of your life. Let the sunbeams tickle you and come home healthy and safe! Hugs, Moni
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