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08-08-2006, 04:35 PM
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#1
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Finally - Tykerb Has Arrived
Just wanted to let everyone know that my oncs office finally received the shipment of Tykerb today. YIPEEEEE.
I went and had blood drawn today and will see him on Thursday to be handed the Tykerb. I am already set with the Xeloda. They are starting me off on 3300 mg of Xeloda daily. I feel that is too high of a dosage but they say that is what the protocal calls for for me and they can lower later. I took it a few years ago and had to lower dosage and then tolerated nicely.
Just excited to get back on something after all of this time (although it feels so nice not to be on chemo for a while)
This coming just in time before our scheduled trip to Italy. We are going for a month which is a long time to be away in a strange country while on chemo. We were not sure if we were going to be able to make the trip with all of this going on. I must admit that I am a bit worried about traveling so far just starting off on a new drug, and not knowing the side effects, but we have had this planned for so long and the trip will do us both good mentally.
I pray for those of you that are waiting to start in this program and that it does not take Food & Drug a long time to approve for everyone. Let's have good hopes for this drug.
Take care and good luck. Will update as I go along.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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08-08-2006, 05:39 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Wow, Irene I am so happy for you. I have been following your posts and hope that this combo works for you.
I am also so pleased that you are going on your trip. Maybe you can keep in touch with your oncologist by phone or by e-mail if you have any questions while you are in Italy. There are also hospitals or clinics in Italy if you need them.
Have a wonderful trip. We will all want to hear about it.
Best regards,
Barbara H.
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08-08-2006, 05:44 PM
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#3
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Thank You Barbara
I have been checking out a few of the hospitals there in case needed and I will do just like you suggested as far as keeping in contact with my onc. The wonders of email.
I will also check in with everyone on the board every once in a while. Until my feet hit Italian soil, I will not believe this dream. We are both of Italian decent so this will be extra special and hopefully find some long lost family members while there.
I want to be UNDER THE TUSCAN SUN.....
Take care Barbara
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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08-08-2006, 06:00 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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BUONASERA Irene!!!!
I am SO happy the Tykerb has arrived and I hope it works WONDERS for you. Take care and God bless. Have a WONDERFUL trip.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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08-08-2006, 06:37 PM
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#5
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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One Italian girl to the other!
Dear Irene,
I have been following your posts.."Congratulazioni" on receiving the Tykerb.
The very best of luck....Enjoy Italy and drink lots of olive oil and point your face to the sun......
Wishing you the best!
Arrivederci, Buon viaggio
Jean
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08-08-2006, 06:39 PM
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#6
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Senior Member
Join Date: Jun 2006
Posts: 153
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Yea!!!!!!!!!!
__________________
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08-08-2006, 06:47 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Have a wonderful trip Irene. You can always stay in touch with your onc via phone or cyberspace. Have him give you a prescription for Binefine ointment or another good ointment in case you need extra care of your hands and feet while away. Bring a good sunscreen too (because of the Xeloda) and make sure you know all the side effects that occured in the trials (so if you get them while you are away, you know thats what it is from). Bring what you think what you will need if you get those side effects (ie: Imodium if diarrehea is a side effect etc). Not only will you feel at ease bringing these items - my motto is that you will not need them if you have them (which is why I kept my baby crib and items - the anti fertility symbols).
Yippee for you - travel and Tykerb, a great combo for NED for you.
Love, Becky
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08-08-2006, 06:55 PM
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#8
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Senior Member
Join Date: Sep 2005
Posts: 556
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Irene,
I am so happy for you. Wish you the way to NED with tykereb.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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08-08-2006, 06:58 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Becky;; you are a HOOT! But truthfully, great advice for Irene and IRENE! You are an angel to keep us posted every step of the way...please continue to post, letting us know what, if any, side effects you are getting...In the meantime; I have no doubt you will enjoy Italy...look for the "hole-in-the-wall", side street Trattorias ... they have the best food!
LOve Kim from CT
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08-08-2006, 06:59 PM
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#10
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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HOORAYYYYY.
i know you will keep us posted.
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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08-08-2006, 07:04 PM
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#11
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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I am so happy for you. Now, lets all pray that it works. I am hoping I will be the next one to receive it. My oncologist says he will give me 2500 mgs of Xeloda as he likes to use less and increase if necessary. He says if a person has side effects such as diarrhea its because the does is too high. Now, that may change when the time comes. Enjoy your trip and keep us posted. hugs, Sandy
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08-08-2006, 07:06 PM
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#12
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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What wonderful news. Have a great time in Italy.
Karen
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08-08-2006, 07:48 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Dear Irene,
I'm so happy for you and I feel with this new drug you will beat thie disease forever. Go and have fun and enjoy your trip.
Love and hug.
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08-08-2006, 08:49 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Terrific!
Irene, I'm so glad to hear you are finally getting to move forward with this! I've had my fingers crossed for so long I'm almost having to type this with my nose.
And just in time for your long-awaited (and much deserved!) trip to Italy! I'm sending huge prayers that not only will the Tykerb/Xeloda work wonders, but that that wonderful TUSCAN SUN and fabulous Italian wine and food will prove to be (as the researchers would say) "synergistic" and healing.
BRAVA!
Have a great time!
Much love
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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08-08-2006, 09:41 PM
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#15
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Irene, such great news!!! Hope you tolerate everything and can enjoy your well deserved trip. You are a TYKERB PIONEER!
<3 Lolly
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08-08-2006, 09:58 PM
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#16
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Irene, I am so happy your wait is now over. I can only imagine how it felt waiting for it to actually get there so you could get started on it. Please try to enjoy your trip to Italy...I know it HAS to be a bit nerve racking starting on a new drug and leaving home...but sounds like you have covered all your bases by checking hospitals for when you get there just in case its needed. And as we all know...if you have it all planned out...you WON'T need it. So you did good girl. 
Your going to be gone a WHOLE month in Italy....oh your killing me. It must be NICE. You are going to have so much fun. I am so excited for you. Have fun and enjoy yourself. I am glad it all worked out for 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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08-08-2006, 11:08 PM
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#17
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Senior Member
Join Date: Jul 2006
Location: Memphis, Tennessee
Posts: 35
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Congratulations
Dear Friend, Wow! I am so happy for you. Best wishes for a fantastic trip and great results with the new drug.
Love, Kathy
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08-09-2006, 01:21 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Great news Irene. we look forward to your reports of its usage.
Christine
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08-09-2006, 04:37 AM
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#19
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Irene-
I am so happy for you - I remember how excited I was to hear that i would get the tykerb with the xeloda, and how eagerly I waited for the doctor's office to tell me could come in and pick it up...
The immodium is a good idea, as would be the the cream for your hands and feet. I know some like bag balm, but I find it so greasy to be unusable. I prefer the Udderly Smooth udder cream, and my local CVS carries it!! Also, I tend to get the splits in the hands at joints as opposed to the peeling, so I always have antibiotic cream and band-aids, which come in handy...
Since you were on the xeloda before, you know not to "tough it out" to finish a cycle if the H/F kicks in - call your onc and keep him posted of developments...
I love Italy, and hope to get back again soon - have a wonderful trip.
Good luck with things,
Shell
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08-09-2006, 10:53 AM
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#20
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Irene,
So glad that the Tykerb finally arrived. Enjoy your vacation as you certainly deserve it.
__________________
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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