Getting into trials

[mike716]

I am 64, in good overall health, recently diagnosed with HCV, genotype 1b, still have pretty good blood markers, and am probably a good patient for drug trials.

I know about the NIH trials website, but it isn't patient-friendly and takes a whole lot of time and trouble going through it and then trying to contact the people doing the trial, maybe for nothing. With hundreds of trials going on, I could spend the next year looking for one.

I'snt there some central trials clearing house for patients, where you can offer yourself and see what trials are interested in you?

[Trish77]

Yeah....I felt like I was double-crossing my hepatologist when I headed off for a second opinion to another one in Toronto and then landed in a drug trial and had to come back and tell him .. um .. I won't be treating with you and here's why.  But .. it was best for ME.  Anyway.  I've said enough on this and it's in your hands.  I do wish you good luck with whatever you decide and I hope you keep us posted with how it's going.

Thanks for the oatmeal-farina-almond pudding directions.  :)

One thing you don't want to do .. is run out of batteries.

Take care.

Trish

[mike716]

What you say makes a lot of sense. But you don´t know Argentines.

Anyway, I can get a biopsy done whenever I want over at the med school hospital. I already talked to the head of hepatology there about it, and he gave me a scrip for a pre-biopsy blood analysis (TP-KPH [?], prothrombine time, and platelets). So I think I can just waltz over there and have a biopsy done pretty much any time I want. The trouble is that then I´m sort of double-crossing my hepatologist at the Italian Hospital.

I know this all sounds like a lot of eye wash, but you gotta understand I´m living in the third world...

Re the oatmeal-farina-almond pudding, you just toss a handfull of almonds into your oatmeal-farina (75%-25%) bowl along with the sultarina (pitless) raisins. That´s after mixing in the honey (liquid) and the soy milk, natch.

I´ve been experimenting with healthfood store oats-from-the sack, but decided to go back to Quaker after burning a nice stainless steel pot while posting to this forum. It´s too far to run back and forth between my computer and the kitchen with these slow-cooking oats And my smoke detector ran out of batteries.

Mike

[Trish77]

Mike:  Last reason: I already got on my horse about biopsies and am in a fight to get them to do a FibroTC (tomography-based) and/or Fibrotest (special blood markers) instead of biopsy. What am I gonna do now, go back and say: "Do a biopsy on me or else"?
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Well, yes.  Well not quite like THAT ...haven't you ever heard that adage."it's not what you say, it's how you say it"?   How about "would you please do a biopsy"?  You can tell them you'd still like to pursue a Fibro CT and it looked like the best option at the time and that the thought of a biopsy had you pretty freaked out at the time so you were looking strongly at alternatives...however, you've kept an open mind, kept reading up on it and you're thinking that a biopsy is starting to look pretty good.  IF that's how you really feel.  

This is about your health, yes?  I get the endoscopy thing...what the heck.  Then you know where you're at with varices, nothing lost there.  If you really want a biopsy, then suck it up and get it done.  Just a thought.

Good luck.

Trish

[mike716]

My hepatologist probably lost a coupla patients with varices and he's paranoid. I figure, let him look for varices if he wants. Anyway, is an endoscopy really more invasive than a biopsy? I've heard some blood-curdling stories about biopsies, whereas I never heard of anyone bleeding to death from an endoscopy. But what do I know?

The thing is, they're going to do a colonoscopy on me with general anesthetic anyway, so why not go in from the other end, too, while they're at it?

Last reason: I already got on my horse about biopsies and am in a fight to get them to do a FibroTC (tomography-based) and/or Fibrotest (special blood markers) instead of biopsy. What am I gonna do now, go back and say: "Do a biopsy on me or else"?

They already figure they're dealing with a nut case. Why make it any worse? I hassle them too much, they might tell the Health Plan people to invoke the "pre-existing condition" threat. Then where would I be? I don't have insurance in the U.S.

I know you're probably right. But I have to look at the whole picture. See what I mean?

M.

[copyman]

i would insist on the liver biopsy first. seems they are doing things backwards where you are. doctors usually do a biopsy first then if cirrhosis is found they do the more invasive endoscopy procedure. best of luck to you

[mike716]

Oatmeal-farina-almond pudding, huh? Sheesh! Now I gotta go out and get some almonds to test the ratios. I shudda kept my big mouth shut.

M.