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Old 12-27-2006, 05:29 PM   #1
bashmaz
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Question I qualify for the Lapatinib/Tykerb Clinical, but have to pay for all the tests

Hi all - it looks like I can get into the clinical trial for early stagers for a year of lapatinib,( or placebo.) I've never had Herceptin or a recurrance. However, unlike a previous GSK clinical trial i was in (for a her2 vaccine), this one says I have to pay for whatever my insurance won't cover. I can't imagine insurance companies are up for paying for "elective" tests - i.e ekg, etc, that are required about every 3 months during this trial. I also feel a bit miffed at having to claim all the tests (except bloodwork), through my insurance, as I worry about the lifetime max. for claims.

Also, one of the side effects is nausea/vomitting, and I'd hate to have to pay out of pocket for Zofran! And if I actually had NO side effects, I'd figure I was taking the placebo, and then I'd still be paying for a year of tests. I do feel that this would still be a good thing, and a benefit to our children, so I'll probably end up doing the trial, but just thought I'd see if any of you have comments/thoughts on this.

Marianne
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Old 12-27-2006, 06:15 PM   #2
PatS
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I should be starting this trial soon, as long as I pass the MUGA test on Friday. It's my understanding that insurance should pay for these tests as they can be standard follow up tests. However, if insurance doesn't cover them the oncs office will contact the company running the trial and they will probably pay. My oncs office doesn't seem to think it should be a problem, so we'll see what happens. My onc said the most common side effects she's seen are a rash and diarrhea and says these often clear up on there own. Hopefully she's right!

Pat
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Old 12-28-2006, 10:27 PM   #3
Shell
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I agree with Pat, although I am surprised that a trial doesn't cover a test required only for the trial - i was in the xeloda/tykerb trial, and my insur. paid for the cat scan as i would have gotten that anyway, but the trial paid for the muga (or echo)...


i had no need for any anti-nausea meds while on tykerb, so try not to worry about that...

good luck,
shell
__________________
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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Old 12-30-2006, 01:58 PM   #4
bashmaz
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thanks PatS and Shell for your replies

After talking to the trial coordinator, I have a clearer picture of what the trial will/won't cover, and it looks like they cover nearly all of the tests. She also said not to worry about the nausea thank goodness. Now I just hope I get the actual drug, not the placebo!

Thanks again
Marianne
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