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Old 01-12-2007, 09:38 AM   #1
Lauriemn
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question about tykerb

I was wondering if anyone knows that when tykerb is approved, could a dr, other than an onc, give you a prescription for it?

I would like to take it off label, but I know that my onc won't give it me. But, because it is a pill, is it a drug that you would be able to get from Walgreens if you had a prescription? My guess is no, that it is something that is supplied directly from the drug company to the onc, but just wondering if someone would know for sure.

Thanks,

Laurie

Diag 3/05 at age 37
4.5 cm, 2+ nodes
er/pr-
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Old 01-12-2007, 02:21 PM   #2
heblaj01
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I think general practioners would be reluctant to prescribe off label a new drug (like Tykerb with which they are not familiar) that is normaly prescribed by an onc. (In some countries regulation of public health may allow only specialists to prescribe certain drugs weither off label or not).
But it does not prevent you from asking your family doctor.
However an other specialist such as a neuro oncologist or an hematologist may be better inclined to do so.
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Old 01-12-2007, 06:00 PM   #3
Sandy H
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Tykerb is expected to be released next month (update from San Antonio)and then the oncologist would be able to give a prescription but not until then. It has to come from the drug company and one needs to be in a trial. I am in the Tykerb/Xeloda trial which has a strict protocal of seeing the doctor every 3 weeks with blood work and every 6 weeks follow up bone, cat scan. Was getting muga but that has been changed to every 3 months for me. Don't know if that is the same for everyone. I have to see the same doctor at each visit. I get a new supply of Tykerb every 6 weeks handed to me by the oncologist I am seeing. I get Tykerb for free because it is a trial as soon as it gets released then my insurance will pay for it. I hope this helps. The docs have no control here its the drug company. hugs, Sandy
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Old 01-12-2007, 06:19 PM   #4
Sherryg683
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What is meant by "off label"? I've heard that before, does it mean you have to pay for it yourself or what? My Oncologist plans of putting me on Tykerb in February because I have bugged him about it since I found out about it..sherryg683
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Old 01-13-2007, 01:26 PM   #5
chrisy
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Sherry

"Off label" is when a doctor prescribes a medication for something other than the indication for which it was specifically approved. Insurance may or may not pay for off label use - which is becoming more of an issue given the high cost of the new drugs.

I think the Tykerb approval is for treatment of metastatic breast cancer. So an off-label use would be to prescribe it for early stage bc or for, say, ovarian cancer. Your situation - to hopefully keep you in remission from Stage IV bc should be easier to get by the insurance company, but these days who knows!

Good luck!
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
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Old 01-15-2007, 10:04 AM   #6
Shell
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Laurie-

I took tykerb as part of the trial, but then progressed and went off the trial. i plan on taking it again as soon as it is appoved.

why are you sure your onc won't prescribe it? i can't tell from your signature history what treatments you've had, but i think once it's approved, a lot of oncs will be taking a look at it...

regards,
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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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Old 01-15-2007, 11:54 AM   #7
Lauriemn
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I am stage 2b I had AC, 12 taxol/herceptin and then a year of herceptin. I am ned, right now. My onc will only give it to me if I am stage 4.


Laurie
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