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Old 04-05-2007, 07:05 PM   #1
SoCalGal
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supposed to start tykerb/xeloda tomorrow - help!

I am supposed to start tykerb/xeloda tomorrow. Any advice or things I should do? I am so scared.

The pharmacist said to take the tykerb on an empty stomache, all 5 at once. CAn I take this with my morning coffee? I am supposed to also take xeloda, two pills twice a day with food - 14 days on 7 days off.

I am 49 years old and have been fighting this for 11 years and am not ready to give up! Last week I was told I have metastatic etc...lungs and sternum and also had elevated markers for the first time. (oy).

I remember taking xeloda with herceptin in 2002 but I seem to remember that I could only last on xeloda a short time due to stomach probs. I remember being told to "stay ahead" of pain, nausea, etc. Is it the same advice on this regime? Thanks for taking time to respond and I look forward to some insight. -Flori
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Old 04-05-2007, 09:00 PM   #2
Soccermom
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Flori, no answers from me..just lots of hugs and HOPE that this regimen will do the trick!

Marcia
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Old 04-06-2007, 03:50 AM   #3
Mary Anne in TX
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Hi Flori!
Maybe calling the nurse and talking to her about others who have had this combination recently would help! The treatment room nurses where I go are filled with suggestions and so willing to help us know what to do to prepare and deal! Why not make that call to reassure yourself? ma
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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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Old 04-06-2007, 05:26 AM   #4
vickie h
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Xloda

Hi Flori, I started on Xeloda a couple of days ago, an I'm waiting for the Tykerb to come within the next week. I take 3 pills in the morning and 3 at night (3,000 mg) and so far, so good. No symptoms yet. I will be 2 weeks on, one week off also. Let me know how you do and I will keep you posted as well. My prayers to you and much love, Vickie
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Old 04-06-2007, 06:06 AM   #5
Sheila
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Flori

I am only on the Xeloda with Herceptin but I was told to take with food, 2x a day, 12 hours apart. I was also told to only take tylenol, no advil, asoirin etc. I haven't had any problems except for the handd foot symptoms. I take 2500 mg a day, 14 days on and 7 off.
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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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Old 04-06-2007, 09:47 AM   #6
cindyh
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Flori: I've been on a tykerb/xeloda trial since january. I took the xeloda with breakfast and the tykerb one hour or more later, then the second dose of xeloda with dinner. no problem with coffee. I had a lot of trouble with diarrhea and had to go thru various diarrhea meds and a couple of dose reductions to get things under control. I had some sore fingers & toes with peeling, but that's better now too. I also continued herceptin and zometa, every three weeks. Good luck to you. It's a lot of pills, but I got used to it.
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Old 04-06-2007, 10:17 AM   #7
Jean
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Flori,

I do not have any suggestions just wishing you all the very best in your
treatment. You are a strong fighter and am happy to hear that you have
had success for the last 11 yrs. Wishing you continued success.

hugs,
Jean
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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
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TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
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Old 04-06-2007, 10:40 AM   #8
IRENE FROM TAMPA
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Smile Hi Flori

I am also an 11 year survivor.

I have been on Tykerb/Xeloda since last August. I started off with what the protocol called for ofr 3000mg of Xeloda with the 5 pills in the am. of Tykerb.

Yes you have to take the Tykerb on an empty stomach one hr prior or after. I usually take the Tykerb while I am getting dressed for work in the morning and then by the time I get to work I have my coffee and whatever else I am eating that day for breakfast. I am now on 2650 mg of Xeloda since it upset my stomach quite a bit. I have on and off bouts still but its better.

Good luck to you and it should be ok. This is really not difficult to tolerate except with me, its my hands/feet drying that bothers me the most.

Any questions I can help with, do not hestitate to ask.

Take care Flori
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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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Old 04-06-2007, 11:58 AM   #9
Marie G
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Smile Good Luck

Just want to wish you luck tomorrow with your treatment, we will have you in our prayers. From what I read about Tykerb, you are the perfect candidate for this wonder drug and hope you do well with it, keep everyone posted about your treatments, we are excited for you. This may be all your prayers answered.>>Keep the faith, God Bless>> Marie G
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