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Old 08-23-2007, 05:18 PM   #1
sally
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xeloda/tykerb

I am still waiting to hear from the pharmacy about the tykerb. I had a question. I got the xeloda the other day but I am waiting to get the tykerb before I start the xeloda. I forgot to ask my Dr. and I am assuming this is the right way to take the drugs, together. Let me know what you think. Thanks, Sally
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Old 08-24-2007, 06:30 AM   #2
doh2pa
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Hi Sally,

From a practical standpoint it's easier to begin them together, since you are on a 3 week cycle with both of them. But I would call your onc to check anyway.

Good luck, hope this works well for you. It's been a fabulous and easy combo for me.
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Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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Old 08-24-2007, 05:48 PM   #3
Esther
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I actually started one before the other when I got it. I'm on an every other week schedule with the Xeloda, so the cycles vary anyway.
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Old 08-25-2007, 05:10 PM   #4
Heide
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Problems with script coverage for Tykerb/Xeloda

Hello Everyone,

I started on Tykerb/Xeloda on 8/22/07. It was over 26 days from when my Onc prescribed it until I rec'd scripts in the mail. He said that was a long time to wait and to receive it. I had road blocks with my prescription coverage, as I'm sure others have. I have Anthem bc/bs that I buy myself (not thru an employer) because my husband is self-employed and I work at part-time and don't receive ins. benefits. Anthem has been wonderful to me! Unfortunately though, my prescription benefit has a max of $2000 per year; and since Tykerb/Xeloda fall under prescriptions; I couldn't get a month supply of either drugs. After buying a 25 day supply (5 pills a day) of Tykerb, I maxed out my coverage and put the $497 dollar remainder on my credit card. I then was considered prescription un-insured and applied to Roche (with the help of my Onc and his fabulous nurse) and Roche is providing me with a 3 month supply of Xeloda while they assist me in finding alternative funding. The Tykerb is hopefully coming from another program called Committment to Access. I'm still waiting to here from them about my app.

I guess my reason for telling you all this is because I feel like, well, for lack of a better word, a loser because I can't pay for my own medicine. But who can afford $4000-$6000 a month for prescriptions! Lots of insurances must have caps on prescription benefits right? I don't know how long I'll be on this treatment, and with new drugs coming out in the future, I'm sure they'll be scripts (pills) as well. Because there was a lag between xments (I was taken off HKI-272 phase 2 trial in July), my Onc had me come in for a dose of Herceptin to hold me over. It makes no sense to me that my ins. will pay for the Herceptin infusion, but not Tykerb/Xeloda pills. If I could get Tykerb/Xeloda in infusions I would, but was told it doesn't come that way.

My husband tries to comfort me and tell me that I will get my medicine and not to worry, but I get real upset about it. I know I shouldn't put a price tag on my health (and ultimately my life) but it's hard not to. Has anyone else out there felt this way or had these problems?

Thanks for listening.
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DX at age 37 on 5/24/05 Left breast IDC and DCIS, high-grade
modified radical skin-sparing mastectomy 7/11/05 with re-con TRAM flap.
tumor size 3.5 cm
HER2 To CEP-17 Ratio = 6.76 positive ER positive
A & C infusions Aug. - Oct. 2005
Taxol & Herceptin infusions Oct. - Dec. 2005
6 weeks radiation completed March 2006
Continued on Herceptin every 3 weeks until 10/24/06
re-occurence left side supraclavicular nodes Jan. 2007
HKI-272 phase 2 Trial Jan. - July 2007 (supra nodes shrunk for awhile)
Enlarged node in chest wall near windpipe.
started Tykerb/Xeloda 8/22/07 (on for 2 months - not working - 3 new liver mets).
11/07 Neupogen(G-CSF)/Herceptin/Navelbine Trial 11/07
2/8/08 Catscan shows 1 of 3 liver mets went from 9 to 24mm.
2/29/08 Phase II trial of Ertumaxomab.
4/10/08 Catscan shows progression on liver mets and 2 new liver mets.
4/11/08 Started Taxotere/Herceptin.
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Old 08-26-2007, 08:59 AM   #5
Joy
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Heidi, I'm so sorry for your dumb insurance stuff. I have pacificare and while, I feel very fortunate to have it (through CoverColorado, formetly Colorado Uninsurables, our state high risk pool) my prescription coverage fortuantley does not have a max, but my initial co-pay for T/X was $2800 for 3 weeks worth. Now it has since come down because I had an out of pocket limiting thing, but it is still over $500/month. I applied to the Patient Access Network for help and they awarded me a $7500 precription grant. For which I'm sooo thankful. Google them, if you haven't and see what they can do. they were actually the most pleasant and knoweledgable people I dealt with at the time of crises. My insurance compnay, not helpful, my prescription manager, not helpful-did not know a THING about the drugs. But the specialty pharmacy, US Bioservices and the Patient Access Network Foundation have been great!

Good luck with all of it!
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 08-26-2007, 06:24 PM   #6
Heide
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Location: New Hampshire
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Thank You Joy!

I appreciate your kind words and information. I will look into it.
__________________
DX at age 37 on 5/24/05 Left breast IDC and DCIS, high-grade
modified radical skin-sparing mastectomy 7/11/05 with re-con TRAM flap.
tumor size 3.5 cm
HER2 To CEP-17 Ratio = 6.76 positive ER positive
A & C infusions Aug. - Oct. 2005
Taxol & Herceptin infusions Oct. - Dec. 2005
6 weeks radiation completed March 2006
Continued on Herceptin every 3 weeks until 10/24/06
re-occurence left side supraclavicular nodes Jan. 2007
HKI-272 phase 2 Trial Jan. - July 2007 (supra nodes shrunk for awhile)
Enlarged node in chest wall near windpipe.
started Tykerb/Xeloda 8/22/07 (on for 2 months - not working - 3 new liver mets).
11/07 Neupogen(G-CSF)/Herceptin/Navelbine Trial 11/07
2/8/08 Catscan shows 1 of 3 liver mets went from 9 to 24mm.
2/29/08 Phase II trial of Ertumaxomab.
4/10/08 Catscan shows progression on liver mets and 2 new liver mets.
4/11/08 Started Taxotere/Herceptin.
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Old 08-27-2007, 10:46 AM   #7
hutchibk
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Hi Sally - my Xeloda showed up 12 days before my Tykerb, and my doc told me to go ahead and start the Xeloda. I am glad I did as I think it mitigated the side effects that might have been worse for me as a result of "front-loading" - i.e. starting two strong drugs at the same time. It allowed my body to get used to one before adding the second one.
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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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