| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-14-2007, 09:40 AM
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#21
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Joy-
Brenda's advice sounded right on, and I hope you get the answers and reduced costs as a result. I am like Sheila, in that I'm very grateful my husband's insurance - it covers all but my co-pay of $19/month for tykerb.
Stay postive and focused, and I'm sure things will work out for you.
Kind regards,
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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05-14-2007, 03:49 PM
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#22
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Odette
I won't know if the onc. will keep me on the Xeloda yet, I will find out next Monday when I go for my Herceptin...this is my week off and my feet are really hurting. I don't seem to be havig a good response to the Xeloda this time, but I haven't taken 6 cycles yet...if she changes me, I will send you my "stash."w
__________________
"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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05-16-2007, 11:30 AM
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#23
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Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
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The Saga Continues
Yesterday my nurse calls: my oncologist got a fax that Anthem is going to cover my Xeloda. Yess, it is in writing now.
This morning at CVS to fill my prescription, I inquire what is my copay?
So the lovely pharmacist calls the special line reserved for pharmacies, they put her on hold, then hang up on her then the answer comes: my copay is 100% = $1250 for two weeks of Xeloda.
The reason they gave her is that it is a brand name; my coverage is good only for generic.
Crazy, I was so upset I forgot to get the other things I wanted at CVS, then went to the grocery store then drove home w/o my groceries.
I guess I should not take it personally. I think I'll drive to Canada over the weekend and get it there; it is only about $ 900 according to my research.
My only consolation is all of you gals, following and sympathizing and the letter that I'll write to the insurance company.
Love and hugs,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
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05-16-2007, 11:50 AM
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#24
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Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
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Oh Sheila,
I'm so sorry to hear that your feet are hurting so much, you would probably like to be off the X.
This insurance business makes me feel like I stepped into Franz Kafka's novel The Trial. I hope things work out well for you either with or without the Xeloda.
Please just e-mail me if you really do not need the rest of your X pills.
My prayers and good wishes are going your way,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
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05-21-2007, 02:02 PM
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Sheila
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This message has been deleted by Sheila.
Reason: given
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06-01-2007, 01:52 PM
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#25
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Tykerb Cares program
Joy, I called Tykerb Cares when My insurance refused to get me to a specialty pharmacy and pay for the Tykerb. I called 866-489-5372 and they were absolutely wonderful. They worked everyday for 2 weeks to get me the medication and my co pay ended up at 20 dollars a month, this was after my insurance refused to pay for it! Keep calling your insurance, but I would trust that the Tykerb Cares program will do most of the work for you. They were relentless in getting me mine. Much love and luck to you, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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