| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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04-26-2007, 10:08 PM
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#1
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Who is on Tykerb/Herceptin?
Who is on Ty/Herc?
Ty/Herc/Xeloda?
Are you in a trial? Or your doc prescribed it off label?
Is your insurance paying?
Thanks! Still writing my research paper to present to my onc Friday. Hoping to expand the rubberband around his brain... He's just really careful and worries, rightfully so, about unintended consequences without enough data.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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04-27-2007, 12:54 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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I am on Tykerb, Herceptin and Xeloda, and my ins co United Healthcare is paying for it.
For me this is the FDA approved use of Tykerb/Xeloda.
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04-27-2007, 07:01 PM
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#3
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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I just recieved my 3 month supply of Tykerb today. I am on it with Herceptin alone as a preventative. My oncologist prescribed it to me off label and my insurance gave me no problem with it, I pay 40.00 for the 3 month supply. ...sherryg683
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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04-28-2007, 05:49 AM
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#4
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Sherry
Do you get it from a big mail-in pharmacy associated with your insurance, for example Medco, or do you get the three month supply from a regular pharmacy?
Thanks for the info!
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04-28-2007, 09:52 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Lani:
I think that the Tykerb is only available through mail order pharmacies, that the Tykerb Cares program is contracted with.
Once your onc submits your paperwork, the Tykerb Cares program forwards your prescription to one of the participating pharmacies to fill the order for you.
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04-29-2007, 08:01 AM
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#6
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Yes, and the Tykerb Cares people contact your insurance to determine which of the participating pharmacies is a provider for your insurance in order to get the best coverage for each individual.
The list of participating pharmacies is on the TykerbCares website.
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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05-11-2007, 06:57 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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I am on Tykerb and Herceptin. I am going to check with my oncologist about whether we are going to add a chemo. Am I the only one on just the two?
Carolyn
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