biopsy/advice

[rearfang]

Hi everyone,
I didn't want to take up space, but I guess I am anyway. Tomorrow is my bx. I should be able to drive home after the several hour waiting period, right? How long until the results will be available?I figure the valium should be worn off pretty well by then? A couple of days ago I jumped in on a thread, but only got one response (Thanks Barngoddess.)My insurance company will NOT cover tx, although my dr. had my hopes all up that they would.... I guess I knew he was wrong, but waited to find out anyway. Now I guess I'm going to have to find another alternative-- I really don't want to have to take out a second mortgage. I'm recently separated and am already barely squeezing by. How long does it take/how involved is it to get into a clinical trial? How often does one have to go to the site that is sponsoring it? Can one get into a trial and be "overseen" by one's own dr.? I have looked up some info, butall of the appropriate trials are more than a 3 hour drive from where I live. I know I want to do tx even if there is very little damage to my liver.
Laika--How's it going?

[LvdByGod!]

hi rearfang, i hope you can find out a way to work this out...i hope some experienced trial people can come and help you out with those questions...also i wouldn't trust your dr to find out about your insurance for you...mine can't even get the prescription requests right...i always have to follow up on him...also the insurance reps have given me conflicting info too on occasion so it will be up to you to find out what's really going on...i also agree that there must be some mistake here cause interferon is standard tx now for hep c...unless you have some bogus insurance co. hope not!!!

i'm not on a trial but see a dr 1 1/2 hours away so they're letting me come in every 3 months...they will also let me get blood from a lab closer to me if i choose...they also told me they would be willing to work with me through my local liver dr...

but with trials i'm sure they're more picky...so...???

time to call gramma or sis or your girlfriends and put the question out there...i know if i lived by you i would love to help you in that way...i'm sure others will feel the same way...

it's only once a month at most, i believe that you will have to go. my new specialist also has a nurse call me to check up on me...which is nice and i can ask her for side effect meds and any probs i may be having...this also saves trips in...

i pray for you for your biopsy, that all will go well...take the valuim and pain meds, in enough advance of your test that it acually starts to work befor the poke...if you chew it that should help it work sooner...also if you take it on an empty stomach...unless they do it interveinously...then no worry...

i had varsed and darvaset intervienously and it was great!!!...so great i didn't want it to end...;O)~

boy is that the old druggie in me talkin!!!

(been off drugs for 20+ years now thanks to the Lord...liked them suckers too much back then...)

i just know there will be a solution for you with treatment...i'll be praying for you kiddo...

sandi

[DH Bill]

It sounds as if you gave up to soon on your insurance. My company switched providers 24 weeks into my tx and the new one said they would not cover the last 24 weeks of tx. I fought them (polite but riba firm) and finally got them to cover me although with a much higher copayment. I believe some companies policy is to just say no and hope you will go away.

If I would have not fought I wouldn't be SVR today. You sound down and discouraged I have been there. Don't give up. Where there is a will there is a way! Keep your chin up and don't give up without a fight.

[donAlfonso]

I just realized I hadn't read your original post very carefully.  Sorry.  Your insurance sounds like one of these phony plans that turn out to cover nothing.  I hope you can find some way to get affordable tx.  Would it help you to wait until the insurance company can no longer claim pre-existing condition.  You say you have minimal damage, maybe now just isn't the time (and I am very pro-tx).  Not to be glib, but get a new job w/real insurance.  Again, best of luck.

dA

[stan1]

have you applied directly to the assistance programs supported by the drug companies (Roche, Schering Plough)?    here's the number for PEGASSIST, the Roche program: 1-800-387-1258.   if you have no rx coverage and don't exceed their income threshold, they may be able to supply you with free pegasys and copegus.   there's an application that must be completed by you and your doctor, and the prescriptions must be written in advance and included.   PEGASSIST won't disclose to you over the phone what their income threshold is; you'll have to apply and see what happens.....the figure they'll examine is the AGI (adjusted gross income) from your most recently-filed 1040.  

I'm not sure how the Schering program works, but it's called Commitment To Care......i don't have the phone number but someone here probably will.    another factor to consider, even if you can get the IFN/RIBA supplied free, is the potential cost of white-cell boosters like Neupogen and red-cell boosters such as Procrit, should you need them.   Neupogen costs about $300 per 300mcg vial (a typical single dose) -- some patients use none, others a few vials a month, still others at a pace of up to 12 vials per month. Procrit costs about $500 for a typical dose of 40,000 units -- once again, some patients never need it, while others will use between two and twelve vials a month.   Amgen has an assistance program for Neupogen but some hoops must be run through.   the manufacturer of Procrit (Ortho-Biotech), specifically *excludes* hep c patients from its assistance program.

will your work-related medical coverage pay for the drs appt's & labwork for tx, even if they don't cover drugs?

stan

[donAlfonso]

INF tx is no longer experimental.  The NIH recommends tx for almost anyone diagnosed w/hepC.  As long as your insurance plan includes prescription coverage, you should be covered.  Appeal immediately, don't even bother to speak with anyone less than a supervisor.   And have your doctor contact the insurance company as well.  Don't give up, and best of luck to you.

dA

[Laika]

Hey..I'm doing great.  If I didn't know I had a shot and swallow pills 2 X a day, I wouldn't know anything was different.  I was so excited that I could get out of bed and live my life for the last 3 days that I'm absolutely high on it.  I know I can't probably expect to cruise thru treatment with no sides, but so far so good.  My drs office says about 80% of their hepC patients don't feel much of anything for sides.  I'm hoping I'm one of them.

I've been worrying about ya.  I get very angry about the ins co situation.  What is the deal when you get a job with "benefits", think you have insurance, pay your part of the premium, and then when you need treatment that would put you in the poor house, they say "oh we don't cover that".  But we don't want to see any "frivolous lawsuits" against the poor suffering major corporations, do we?  Ugh!

I'm glad you're keeping at it.  I know it seems un-doable right now, but hopefully solutions will reveal themselves.  You need someone to help you.  It's tough to ask, but there are people out there who really would like to help you get your biopsy, drive you back and forth.  There's probably no one that you'd LIKE to ask, but probably someone that you could.  They didn't give me anything for my biopsy except some novocaine type stuff at the site.  Next time, I insist on something to relax me.  By the time it was over, I had a crushing headache and they had to give me something for that.  It's not a big deal--it's just nerve wracking.

Here's hoping you will get a break on your biopsy results, anyway.

Laika

[cuteus]

the hospital might not allow for you to drive home after the procedure, they did not allow me to drive after my colonoscopy, my biopsy or my eye surgery, and they were all done under local anesthesia. You better find out for sure if you can drive yourself.  They would not even allow me to go back home in a taxi withouth someone been there with me.
hopefully you might show very little damage and you have time to weigh other options.

good luck

[rearfang]

Thanks for the response. It isn't so much the drive, it's how often? I work full time and have a 3 yo at home, so I obviously couldn't be doing it on a weekly basis. How often did you have to make the trip? How hard was it to get into the trial? How long did it take to begin tx?
Lauren

[rearfang]

Good memory. The rx plan will cover only 90 days worth--like that really helps-- and that's even if I can get on it with a "pre-existing condition". I haven't put too much effort into that idea yet, as I'd still be looking at around $20,000 of uncovered expenses. I put a call in to the county about a plan for covering catastrophic illness costs that insurance doesn't cover, but I fear they'll tell me I make too much. Too much to qualify for assistance, not enough to afford it. Go figure.Thanks for the input about the bx. I guess I'll plan not to drive.

[new-sojourn]

I had to drive 3hrs+ each way to be in a test.  I had NO insurance, end stage, major esophogeal bleed b/got into Schering-Plough Commitment to Caring (?).  My local doc was set up for minor things that might crop up.

If you gotta drive, you gotta drive.  Many hep c patients from rural areas have to drive to the 'big city.'  If its free meds and a chance to cl, every mile is worth it.  the alternative for me was death.

[stan1]

your doc will probably call with bx results in a week or two -- have someone drive you home from the procedure....the hospital will probably insist on it -- you might get IV ativan and/or demerol, and even if you don't need it, they'll most likely make sure that someone is driving you home.   take it easy for a few days afterward and don't do anything physically strenuous that might cause internal bleeding if the opening takes a while to heal.   i don't know anything about clinical trials, but didn't you say you had a rx plan through work that you could sign onto after a waiting period?   would that cover the meds?   good luck,

stan