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08-22-2006, 02:37 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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Question for Irene in Tampa
Irene, do you know if your insuance is paying for Tykerb? I was told they would bill my insurance and if they didn't pay then they didn't know what would happen. It is an experimental drug/trial so am wondering. Thanks in advance and sorry to ask just before your trip. Sandy
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08-22-2006, 03:59 PM
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#2
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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The Best Part Sandy
They will give you the Tykerb for FREE.
You will need to pay for the Xeloda through your insurance but if you are in a trial or the EAP use its GRATIS.
__________________
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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08-22-2006, 05:34 PM
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#3
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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This is what I thought but the nurse in Data Manager Dept. said my insurance will be billed. I know someone that is in an Avastin trial and he was told it was free and his insurance was billed for it and it denied it. He then was told he would have to pay and he said, "no way". They appealed with his insurance and it is being paid. He says he is getting statements from his insurance company showing it is paying. He does not want to question it because he is afraid he will have to pay out of pocket. I guess, we will find out it seems we are told one thing and then it turns out different. It was my understanding it was free. I am not going to worry about it as I have 3 insurances and so far everything has been paid for. Have a great trip. I forgot already where you were going and for how long. Enjoy anyway. hugs, Sandy
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08-22-2006, 06:23 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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I dont understand
what they are telling you. Are you going through a hospital or doctors office.?
They will receive the drug from GSK and believe me its FREE. If they try to bill your insurance, then something is wrong there as the drug company is supplying this as a study. Your insurance company should not be billed at all.
GSK even explains that in their information that the trial drug is free.
We are going to Italy Sandy and leaving on Friday. I am trying to cut down on my packing and am having a hard time parting with things to take. I don't know how to do anything on a small scale. I know that I will probably not use all of the clothes I am taking - but have to down scale a bit.
Like you said, don't worry just be happy.
Talk to you soon.
__________________
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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08-22-2006, 08:01 PM
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#5
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Irene
BON VOYAGE...Have a wonderful trip...we are all so 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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08-22-2006, 08:05 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Irene-
The best advice I always received for packing was to pack everything I wanted, and then walk around the house with the suitcase for a bit - 2/3 of it would then come out as unnecessary... zyThink about bringing a scarf to drape around your shoulders if you're doing cathedrals, duomos, etc if you're wearing sleeveless things for the summertime weather...
Shell
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08-22-2006, 08:08 PM
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#7
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Member
Join Date: Aug 2006
Location: naples fl
Posts: 17
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irene how did you get to be on tykerb
hi there my name is kerry and was was dx at 31ys old and did all my tx so i was wondering how i can get on this drug tykerb i was stage 3-b with pos nodes her2nu +3 and i have been off my hercetpin four 6 weeks and i am soo afraid that something is going to happen. pls let me know how you got to get it. thank you so much input like this is soo important. kerry
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08-22-2006, 08:29 PM
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#8
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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,
This is from the EAP press release from GSK:
How much will the product cost through the EAP?
Ø In the U.S. patients will not pay for Tykerb while enrolled in the EAP.
Ø Local guidelines will apply to the Tykerb EAP in countries outside the U.S.
Regards
Joe
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08-22-2006, 08:51 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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dear Joe,
I just have to say how amazed I am at your ability to keep up with our chatter......Clark Kent has nothing over on you...
Love Kim from CT
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08-23-2006, 05:48 AM
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#10
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Thanks Joe, now, I do remember reading this some where. Some times I get overwhelmed with information. Thanks to this support someone will be there to help us get the correct info. or set us straight from chemo. Sandy
Last edited by Sandy H; 08-23-2006 at 05:51 AM..
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