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JmJm and others about Fibroscan
Hey jim & others i have a real dilemma, what do you think about this? dont know if you remember but i have an appointment with dr "A" in boston in 2 weeks. i had called my hepatologist here in NJ to make sure i could get the Fibroscan without ever having a bx done. i know that it is considered in trials and compared to a bx during these trials but it was my doctor that said "Dr A and me are good friends and even have golfed together, i can get you the scan". now i get a call from him today saying he spoke to dr A and he can not do the scan because i do not have a bx within the last 3 yrs! he said dr A told him he could get into trouble with FDA if he gives me the scan, what a crock of sh&%. HR has offered to scan people here without a BX. i have had the appointment for 3 months now and was traveling 500 miles mostly for the scan. i know dr A is one of the premier hep docs but i do not need more opinions. i have seen several great hep docs and have all the opinions i need. through my own research i know what my tx protocol will be when i treat, off lable pre-dosing and first 4 weeks double dosing to hopefully get to the golden 4 week unde. so i guess what i need to know is do you know anything about FDA rules regarding the scan, any links that say it is ok to perform without a bx. maybe something i could bring with me to show dr a that he will not get into trouble. any idea when it will be approved? my doc here in NJ really screwed me saying since Jan that he can get me the scan. this just reinforces how i feel about these docs, i need them to write the scripts for my meds and i will basically tx myself when the time comes, i do not trust any of them! thanks
glad things seem to have worked out for you, this is where boards like this (well one of the reasons anyway) come in real handy:)
Glad it appears to be working out. And based on your scan results, the urgency of the follow-up biopsy may be clarified. From all reports, I think you will like Dr. A. Try and bring -- or forward in advance -- all your labs, ultrasounds, etc, etc. What I've found useful in the past -- esp since my tx records (going back to 1968) are thicker than a phone book -- is to do a one-page summary of all key events, labs, etc, which show date of infection (if known) and take it from there in a chronological way. Do let us know how things work out.
-- Jim
-- Jim
thanks Flguy & jmjm, ok i took charge ( special thanks Flguy) and it may have worked out :-) i called the scan coordinator and set up the appointment, he said they would need the bx report forwarded within 6 months ( special thanks jim).
Flguy, i pray & hope to hear that your "off lable" tx protocol worked because i may be doing it later this year.
jmjm, you are right about the scan becoming available for everyone soon, like i posted above in this thread i had emailed the fibroscan manufacturer and ask when it may be out and they responded 2008.
desrt , not sure if i understood your post but all positive things have been written about being unde at 4 weeks. the word out of the barcelona meeting & other studies indicate that 4 week unde pcr is a strong predictor of SVR, of course nothing is guranteed with this disease but i will shoot for unde at 4 weeks and take my chances.
Flguy, i pray & hope to hear that your "off lable" tx protocol worked because i may be doing it later this year.
jmjm, you are right about the scan becoming available for everyone soon, like i posted above in this thread i had emailed the fibroscan manufacturer and ask when it may be out and they responded 2008.
desrt , not sure if i understood your post but all positive things have been written about being unde at 4 weeks. the word out of the barcelona meeting & other studies indicate that 4 week unde pcr is a strong predictor of SVR, of course nothing is guranteed with this disease but i will shoot for unde at 4 weeks and take my chances.
See "Subject Inclusion Criteria". No idea what "Cohort 1 is" or why it says six months, but maybe you have a shot as it does talk about getting the biopsy after the scan.
http://clinicaltrials.gov/ct/show/NCT00125762?order=1 It's also seems -- badly written -- to suggest that you can't get a scan while on interferon, but I know of at least one person who did. Someone very close to me indeed :)
-- Jim
http://clinicaltrials.gov/ct/show/NCT00125762?order=1 It's also seems -- badly written -- to suggest that you can't get a scan while on interferon, but I know of at least one person who did. Someone very close to me indeed :)
-- Jim
It sounds like the die may already have been cast with the conversation between your two docs but it couldn't hurt to pursue it further.
My understanding -- a very weak understanding :) -- is that the while the biopsy has to be done within a certain period of time vis a vie the scan -- the biopsy can be done *after* the scan. So assuming you have a change of heart and decide to do the biopsy after all (one can always change their mind later although I think in your case -- forgot some of the stats -- a biopsy may be a good idea) this may qualify you for the scan within the FDA guidelines, which I'm sure Dr. A. knows cold.
Like FlGuy says, you might want to work direct at this point. You might therefore want to contact the scan coordinator directly through the office. Explain the situation, that you had -- maybe still have -- an appointment, and were denied because of the biopsy, and that you have now reconsidered that you want a biopsy. Hopefully that will be enough to get you in. If my understanding is incorrect, and your pleas fall on deaf ears, I still think the trip is worth the day's drive back and forth, assuming your insurance will cover. I know you've gotten lots of opinions but this guy is a good one.
Lastly, there will probably be a scan device local to you -- local to a lot of folks -- in the relatively near future. You might therefore call the larger teaching hospitals in NYC to find out. Maybe someone even has one already.
Hope it all works out.
-- Jim
My understanding -- a very weak understanding :) -- is that the while the biopsy has to be done within a certain period of time vis a vie the scan -- the biopsy can be done *after* the scan. So assuming you have a change of heart and decide to do the biopsy after all (one can always change their mind later although I think in your case -- forgot some of the stats -- a biopsy may be a good idea) this may qualify you for the scan within the FDA guidelines, which I'm sure Dr. A. knows cold.
Like FlGuy says, you might want to work direct at this point. You might therefore want to contact the scan coordinator directly through the office. Explain the situation, that you had -- maybe still have -- an appointment, and were denied because of the biopsy, and that you have now reconsidered that you want a biopsy. Hopefully that will be enough to get you in. If my understanding is incorrect, and your pleas fall on deaf ears, I still think the trip is worth the day's drive back and forth, assuming your insurance will cover. I know you've gotten lots of opinions but this guy is a good one.
Lastly, there will probably be a scan device local to you -- local to a lot of folks -- in the relatively near future. You might therefore call the larger teaching hospitals in NYC to find out. Maybe someone even has one already.
Hope it all works out.
-- Jim
I'd be interested to see any solid proof you have that forcing your labs to come out undie at 4 weeks by high-dosing actually produces a sustained response in the end. Too much of SVR is still dependent on genetics, yours and the virus'.
I wish you well in your journey, but I've seen way too many people get themselves in trouble thinking their doctor is just a walking 'script pad.
I wish you well in your journey, but I've seen way too many people get themselves in trouble thinking their doctor is just a walking 'script pad.
Cut out the middle man - your doc. Contact Dr. A, or his office, yourself and make the arrangements. Drive the appoinment in the direction that you want it to go. A pretty long time ago, more than a year, one of our members made the trip from Europe for this express purpose and was successful in his quest.
Hi thanks for the offer and if i ever get to the west coast i may have you set that up with HR. by the way where has HR been? will he ever come back here?
my stats: 50m, geno 1a, VL 5 mil, US, cat scan, bloodwork, all normal. fibroSURE test 10/6 was FO-F1.
Update: i did hear back from the manufacturer of the fibroscan and they said FDA approval will come in 2008.
my stats: 50m, geno 1a, VL 5 mil, US, cat scan, bloodwork, all normal. fibroSURE test 10/6 was FO-F1.
Update: i did hear back from the manufacturer of the fibroscan and they said FDA approval will come in 2008.
Hi, I forgot your stats, whatever you have of them...If you want to come to LA, I can help arrange that HR give you a fibroscan...the people here on the board that had them from HR- were really pretty impressed...
I dunno, maybe he just wants to be able to compare your results to the biopsy for whatever reasons, I can think of a few...youre going to get information from live tissue, that is different then you'd get from a fibroscan, obviously, other info like whether you have a fatty liver, etc...but I really think the fibroscan is really good to give you info on fibrosis progression, or lack there of.....this coming from me and I ain't no expert...let me know....
I dunno, maybe he just wants to be able to compare your results to the biopsy for whatever reasons, I can think of a few...youre going to get information from live tissue, that is different then you'd get from a fibroscan, obviously, other info like whether you have a fatty liver, etc...but I really think the fibroscan is really good to give you info on fibrosis progression, or lack there of.....this coming from me and I ain't no expert...let me know....
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