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]

Honestly, Marcia .. it makes sense to me that your GT is there first.  My appt with the specialist would have been much more productive if that had been done first and we would have made the most out of that appointment.  As it was, he told me some things about Hep C and then sent me for a blood test, making for a very excruciating 2-1/2 month wait.  With your GT in front of him, you'll be able to talk concretely about treatment options.  Just a thought.  Take care.

Trish

[Marcia2202]

Oh, that's excruciating! Over 1 year! They are not allowed to do that here. If the hospitals cannot stay within the time limits set by the government, the government has to pay for treatment in a private hospital or another EU country. It's just that my doctor says he cannot refer me to the hepatolgy department, before he has my GT. I will call him tomorrow, to ask him to do it anyway, maybe the GT can follow at a later date. I hope it will be possible. Thanks for the kind words.

Marcia

[Trish77]

Hang in there, Marcia.  It took me ten months to see the specialist after my diagnosis and then 2-1/2 months to get my genotype, etc. after that!!!   Hope it's over for you soon.

Trish

[Marcia2202]

Hey Mike, you're back... You're lucky... I would love to be able to get a biopsy done now. Am so sick of waiting, have still not gotten the results for my GT. They are still striking in DK and everything has slowed down..... It could go on for another three weeks... So consider yourself lucky and get that biopsy! You lucky man.  :-)

Best wishes, Marcia

[Trish77]

Mike:  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...
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Okay ... I did a "hey, wait a minute" ... and you know what?  Yep.  It sounds like a lot of eye wash.  Big brassy Queens New Yorker who walks out on one of the top hepatologists in New York and you're throwing out that excuse?  That you don't want to offend your Italian hepatologist?  What about the head of hepatology at the med school hospital who put his/her time into you and gave you the pre-biopsy scrip?  You're starting to rack them up as it is so why not just get it done.  Seems you're going to offend someone somewhere if you haven't already.  Maybe you're just blowing smoke because you're chicken, like you said.  I get that.  If it was New York, I'd drive down and hold your hand and if I could afford the airfare, I'd fly down to Argentina and do likewise. Well..okay...I'd more likely be cracking one-liners, I tend to do that in those situations ... just ask my ex-husband what it was like after his emergency surgery for the infection in his testicles.  If they could find him.  And that's all I'm gonna say about that.

Anyway.  Yeah, it sounds like alot of eyewash, among other things.  Maybe it's time to just get 'er done.  It's really the only test that will accurately tell you fibrosis level, even with it's own room for error.  Then you'll know exactly where you're at and you can get on with it.  It puts a "period" on the sentence so to speak, you know?  It focalizes all that energy and thinking in the appropriate direction.  And you seem to have plenty of that so why not channel it where it will do the most good and why not find out where that is?  Endoscopy can happen when it happens.  If you really can get a biopsy done any time, then get it done.  

Yeah.. .I know .. I don't know Argentines.  Just get 'er done, Mike.

Trish

[Mary4now]

I was sort of freaking about getting the biopsy, but heard it was not a big deal,, and it really wasn't they gave me something to relax me, and it succeeded, then they found the spot w/ the ultrasound and in 5 seconds it was done, then I had to lay on my side for almost 2 hours, but I was soooo relaxed.  

[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.

[mike716]

No leads yet on where to get lactoferrin, but I'm working on it. It's going into my "preserve the liver from further dammage" cocktail, together with silybin-PC, Vit E, PPC, fish oil/flax seed, glycyrrhizin extract, and naringenin. I'm thinking of running my own personal research study, on myself. All I need is to talk an M.D. into giving me orders for blood tests whenever I want so I can check on the effects and doses. Hard, but maybe not impossible, huh?

M.

[Trish77]

You don't know the half of it.

T.

P.S. I will look forward to the recipe. ;->

[mike716]

You mention "salted" crackers in this forum? My, my, you do have a lot of courage.

M.

[D977]

I used to take clostrum before i went vegan years ago so lactoferrin is in there naturally but you can get extra added. I recall the powder being stuck to the roof of my mouth. Any leads on pills with it?
Also rebuilds the healthy flora
D

[D977]

Hi Mike

ThaNks for the research the more i read the more i like!!
D

[mike716]

Here's some more stuff I found about iron and HCV:

- Hepatic Iron Concentration as a Predictor of Response to
Interferon Alfa Therapy in Chronic Hepatitis C. GASTROENTEROLOGY 1995;108:1104-1109

- Lactoferrin Markedly Inhibits Hepatitis C Virus Infection
in Cultured Human Hepatocytes. BIOCHEMICAL AND BIOPHYSICAL RESEARCH COMMUNICATIONS 245, 549–553 (1998)

[Trish77]

Okay Mike.. this is important.  Salted or unsalted soda crackers?  

And yes, definitely yes, mostly crackers with noodles but sometimes.. oh baby .. noodles with crackers.

Yeah... I get your drift on the "result of a high confidence/time quotient" factor.  And as appealing as your recipe sounds .. I do have limits. I guess that means my no sugar fruit salad secret recipe that everyone loves cause it has this lovely sauce that tastes so good .. is going back in the drawer.

But ooohhh fun ... a booby prize!!  choices, choices .... I love olives .. like tuna ..bulgar is too close to vulgar .. LOVE oatmeal and almond with it sounds yummy ... like grapefruit alot ... cream cheese is very good ..

Okay, okay!!!  I've got it!  I'll take Oatmeal-tuna-pitted olive-grapefruit-cream cheese- stewed pudding flan.

Otherwise, I'll be very grateful for the oatmeal-farina-almond pudding, thanks. :)

I gotta drop into bed before I get myself in trouble here.....

[mike716]

You couldn't be more right, Trish. Ratio is everything. I've tested a lot of noodle-to-cracker ratios and have found the one that suits me best. Nevertheless, on occasion I vary it. Noodles with crackers most of the time, yes. But once in a while crackers with noodles. Wakes up the taste buds, if you know what I mean.

You certainly are nice, Trish, and it was not my intention to suggest otherwise. Golly, no. But for me to impart any of my secret recipes, much less my patented noodle-cracker recipe, well, I need to have a very special relationship with the recipient of my largess, the sort of relationship that can only be the result of a high confidence/time quotient. I trust you will understand and not hold this against me.

To compensate for my caution in this case, I can offer you without compunction any one of my less-cherished formulations. Oatmeal-farina-almond pudding? Canned tuna-bulgar wheat-pitted olive stew? Or my grapefruit-cream cheese-rye seed flan? Name it, it's yours.

Mike

[mike716]

I agree on the oatmeal. I practically live on it. Oatmeal and farina with raisins for breakfast, oatmeal and brown rice soup for lunch, and grilled oatmeal veggie burgers for dinner. Mmmmm...

Re iron, I read that it's baaaad for hepC:

"Despite substantial scientific evidence, however, few physicians implement iron-depletion therapy before beginning antiviral therapy. This partially accounts for the high failure rate of conventional drugs in eradicating the virus (Boucher E et al 1997; Martin-Vivaldi R et al 1997; Tsai NC et al 1997)." Linked at: http://lefcms.lef.org/protocols/infections/hepatitis_c_01.htm

I am looking around for something that will remove iron from the body without blood-letting, the standard procedure for reducing iron. I found this:

"Lactoferrin, a subfraction of whey protein, may be especially beneficial as an adjunctive treatment for serum iron overload in hepatitis patients. Lactoferrin is a potent antioxidant, antiviral agent, and scavenger of free iron. In addition, lactoferrin is directly involved in the upregulation of natural killer (NK) cell activity, making it a natural modulator of immune function (Yi et al. 1997; Ikeda et al. 1998, 2000)" at http://www.smile.org.au/OtherMedicalTherapies/HepatitisC.htm

Cheers!

Mike

[Mary4now]

Just remember Oatmeal ( I buy organic and as whole as I can cook within 30 mins.) is very good for your liver.
Also be careful of the foods that contain alot of iron.  I dont know about the Kelp and if somehow the iron content is safer or what.  I'm just wary about iron especially being post menopausal.

[Trish77]

I crumble the crackers on top and then mix them in along the way as I eat the noodles.  It's all about the ratio.

I'm left wondering how nice I have to be to get that secret recipe .....  like...I'm ALREADY nice ... aren't I?  :)

Take care.

Trish

[mike716]

What's wrong with noodles and soda crackers? I eat it all the time.

How do you make it? Do you mix them together, or do you crumble the crackers on top?

If you're nice, I'll give you my own secret recipe. For now, just a hint: use egg noodle twists instead of penne, they strain dryer so the crackers don't get soggy as fast. :]


Mike