Tallblonde

[Forseegood]

hi, hate to be so public in telling you this, but I have no other way really.....you and I have always been in "somewhat" the same boat in terms of how we've been dealing with our disease, anyway, I had a fibroscan today, like a few other members here....and I think it would be great for you to get one too, great relief off my mind and there are no big gauge needles to deal with! You probably know it's a scanning procedure, that gives you images of the entire liver...anyway, don't know if you do, but if so, Ina has my info and I could get you in touch with the good doctor, it's here in Los Angeles in a fairly beutiful setting...hope youre well...

Just taking a chance, don't even know if youre still reading...maybe so...

[jmjm530]

Susan's a bit ahead of the curve. She's already had a Fibroscan and I believe it showed either stage 0 or between 0 and 1. Did you scan with HR or elsewhere? What stage did the scan put you at?

-- Jim

[Forseegood]

oh, good for her...me, average 2...

[Forseegood]

forgot to say, HR, thanks for asking...I guess it's not so bad for having this puppy for over 30 years, though, sure would of like a 1, be grateful for small favors, huh?

[jmjm530]

I think you should view stage 2 as very good news for having the virus over 30 years. It certainly potentially gives you the option to wait out the very difficult drugs we're currently treating with. Maybe an antifibrotic supplement regimen, but I'm sure HR covered those bases with you.

Be well,

-- Jim

[tallblonde1]

Thanks for thinking of me, but Jim's correct...I had the Fibroscan last October in Boston.  I had intended to have my second biopsy the following month, but cancelled the appointment after Dr. A convinced me it wasn't necessary to do both procedures (especially since a recent Fibrosure produced an identical score)

I agree with you that the Fibroscan can really put your mind at ease.  Although I'm a bit surprised to hear that you're a "2" (not that it's a bad number).

Have you changed your mind about treating?  I used to say that I wouldn't hesitate to treat if I was a 2, but now I'm pretty sure that I'd continue to wait.  

How are you feeling lately?  

Susan

[jmjm530]

Wonder if you caught my post on Relacore from 3/6 on the other forum. I'd like to get your opinion if you have one. Thanks. Maybe a product Dr. A. might be interested in. LOL.

Be well,

-- Jim

[jmjm530]

That would be from 3/5, not "3/6".

[goldyn]

Forseegood , I would think really hard on what your going to do, When I found out I went from stage 1 to stage 2 in only 3 years ,I made my choice, and at my 3and 1/2 month post was negative, what is your viral load ? Your a 1a right and your pretty healthy, Well just think about it some people go through tx with hardly no sides at all.....

[Forseegood]

Goldie: I agree with you for the most part, though I know Jim and some others think I should wait, I'm just thinking that I don't know that I'd get into the next trial of Vertex cause I think they'll be focusing on relapsers no? I'm treatment naive...

And I do't know if i'm the trial type...I might eat my words though, at some future date...also, the kid I take care of is in her senior year at high school, and might move out after graduation, and I wouldn't have a gofer here to help me out, steppin and fetchin, ha ha! Although it works out that I'm picking up her underwear from the floor half the time, you know how that is, why can't she make it that extra 20 inches to the hamper? no one knows...I'm sick of the fatigue, though of course there's no for sure thing that I'll get energy back, even if I do clear, I try to get a handle on my expectations, expectations do it to you every time...

Tallblond: I'm so very, very glad that youre still taking such good care of yourself with your diet and supplements, I know genetics has something to do with it, but I also think these other facets play into your overall health with this disese...good for you, yeah, I'd definitely wait if I were you, maybe at some point in the not to distant future, you could treat with Vertex and the SOC, maybe for just 3 months or so, wouldnt that be grand? Or even wait for better then that, I remember your some years younger then me anyway...

I agree with your doc, with the fibroscan, youre getting the whole enchilada, I could see that you could have whole parts of your liver perfectly okay, and just a few parts sub par, and then the biopsy takes just the sub par parts for some patient? The fibroscan gives you the full story...what an amazing machine...I think that along with all the blood marker tests, fibrosure, fibrospect, some other things, really gives you a pretty good overall picture...

Jim: always like to hear you take on my situation...and I will get back to that relacore, was discussing it with a certain person, and HR, I'll post what they say, I just have to look at it more carefully and I've been super busy...

[GoofyDad]

As long as forsee has started airing her dirty laudry in this thread (or more precisely, her houseguest's) let me continue in that vein.

I generaly sway pretty far towards the watch-in-wait camp. Forsee will corect me if I'm wrong, but I have the impression that while her average may be catagorized as a two, much of her tissue was a one. So watching and waiting would seem a no-brainer.  

But there are more things to weigh. Namely, forsee complains of fatigue that has severely impacted her QOL. She is unable to engage in many activities that she wishes she could. The likelyhood of SVR improving that situation is hard to quantify - but it ain't getting better watching and waiting.

To me though, an even more compelling reason for her to consider treating in the immediate future is the anxiety she has surrounding the disease and the specter of treating. This is not a case where she watches and waits while enjoying an otherwise normal lifestyle. Were it that simple, holding off on treatment would seem like a pretty attractive option. But to me, in this instance, grabbing the bull by the horns (or maybe the tofu by the rice paper wrapper would be a better metaphor), might be the best course of action.

It's of course a personal decision, and I hope forsee doesn't mind me sicking my nose where it doesn't belong (so to speak). But as long as were going to discuss it, let's get those undies out in the open, skid marks and all.        

  

[Forseegood]

(only some of it was a one, a high one, almost two.... most of it was a two)...I think this brings up a good point...I see now that many of us have livers with weird archetectures, or maybe most of us? I don't know all that much about this, HR sure would though...

A scanning procedure such as fibroscan begs the question...that it's really hard to quantify a "grade" or an average, if the disparity between the samples is so pronounced...say a lot of a liver is graded a 2, some graded a 3, and some graded at 4, (could happen, and does) how would you grade that then? With pretty low damage, and high damage in the same liver? If youre looking at a biopsy, they are just grading the relatively small samples they are getting, if I'm not mistaken, and extrapolating those out to your whole liver...but I think it gets confusing if youre able to scan the whole liver, and there isn't uniform damage, like my example...But then youre the numbers guy, numbers make my head swim...

[Eisbein]

Hi Susan,
I have the mother of all colds, and didn't read for several days.
I only read here and there now... one of the side effects of SVR.
It took Ivette 2 years to wean herself of the board, but she finally made it. She did it cold turkey though, while I choose "tapering off" :)
Anyway, you can repost here, or privately.

So they just take individual posts now, as opposed to the entire thread.
Hm, last year I mistakinly posted some copywrited material from Dr.C, and they zapped every post I made, going back weeks...for all I know in archives too.
When I complained, the answer was...we don't have time to check every thread you posted to find the offending one.
Whatever...

I am curious what Dr.C says about your situation.

_______________________________

Jim,
in regards to the laser. I did ask the tech about IPL, but the way she explained it, if I remember correctly, they use IPL on slightly larger veins. Also with IPL only one vein at a time can be zapped.
V-beam covers one square inch at a time, and is a one time shot. They use it for those tiny spider veins that are just beneath the surface of the skin, and are only 1-5 mm long.
I don't know what your spiders look like, maybe yours are differnt, even though both of ours came from Rosacea, and lets not forget, which came from Interferon :)

Haha, your diet...well I asked you once to give me a typical day of your eating habits...you didn't...which let me to think, that you are hiding some Kentucky fried chicken and Salami in the closet :)

Ina

[jmjm530]

My understanding is that Fibroscan's results have been validated by numerically correlating them with needle biopsy results in double-blind studies. Of course, the biopsy results could have been off, so it's unclear which is more accurate. The fact that Fibroscan, can potentially "scan" the entire liver is a plus, although in actuality they only probed one specific point of the liver, very similar to what they do with needle biopsy.

As to Forsee, "fatigue" is the number one complaint doctors hear in America, especially from women over 40. Fatigue could be from any number of reasons and you can't just attibute it to Hep C. But playing devil's advocate, from what I've read here and personally experienced, the majority of people who treat succesfully do not have any less fatigue after treatment. In fact, many report more and no doubt from the after effects of the treatment drugs. In my case and others, the only thing positively different post treatment is that my enzymes are normal and my virus tests negative. I'm not negating either, they might indeed save my life, but in terms of how I "feel" -- I don't feel any better, to the contrary. There are lots of reasons to treat, with liver histology IMO at the top of the list. But for someone to treat solely because they feel fatigued, IMO they are not only setting themself up for potentially a big disappointment but not accurately weighing the actual risk and rewards. The other points regarding how much she may be focusing on the disease are quite valid and something I assume she's aware of. I showed up here a couple of days after I started treating and gave Hep C very little thought prior to that. Maybe, one day in the not too distant future, I can go back to that, we'll see.

Ina,

The tech has IPL mixed up with another type of laser. V-Beam is also a laser, IPL is not a laser. IPL stands for intense pulsed light. IPL actually covers more of an area than V-Beam and works deeper but not as intense. IPL is gentler on the skin and therefore IPL requires more treatments. Another name for IPL is the "PhotoFacial" laser even thogugh again it's not really a laser. As explained to me, IPL is more for redness, lasters like V-Beam are more for veins. Therefore one protocol is to first do the IPL treatments and then remove any veins left over (IPL can remove some veins) with a laser such as V-Beam. I mentioned a type of laser in my previous post -- can't readily find it -- that my doctor prefers over V-Beam for one-time vein treatment. You might want to look it up and discuss with your technician. How much are they going to charge you for the V-Beam treatment and will they do your entire face? I believe V-Beam costs $2,500 per treatment with my doctor but in my case might require more than one treatment. IPL on the other hand, costs between $500-700 per treatment but requires 5-7 treatments. Again, IPL primarily for redness and skin tone, lasers like V-Beam for specific veins.

-- Jim

[Eisbein]

I don't think the tech has it mixed up, probably me.
Tell you the truth, at the time I had my consultation I had come down with terrific back pain, and maybe I got the lasers mixed up.

The entire face with V-beam is $350, which sounded reasonable to me, considering that big shot is normally outrageously expensive.
I have so many other issues on my plate right now, that for the next 6 month this problem has moved to the back burner.
With less inflammation those spiders are also not as noticeable any more.

I am trying to learn how to exist on a gluten free diet, how to live with chronic back pain, and how to enter old age without becoming a sour puss :)

Ina

[jmjm530]

Thanks. I guess I should start shopping around. $350 sound A LOT better than $2,500. Let me know if you find out anything new. If so motivated, take some Alexander lessons for your back but only from a certified teacher.

-- Jim

[Kalio1]

Fibroscan does ;not (as you stated) probe "only one specific point of the liver" at all. Not sure how you came to that conclusion, the Fibroscan covers your entire liver, the "probe" as you call it is not a probe at all but rather a hand held wand that is moved by the tech across every inch of your liver if it is done right. The pictures and fibrosis readings show a continuous picture on the screen and the machine interprets the elasticity while the tech reads it.

A biopsy is one small "probe" of tissue, the Fibroscan, as Forsee said covers your entire liver allowing you to see how some areas are fine where others show some damage. You can see if a person has a consistently "even" distribution of fibrosis vs having it in some places and not in others.

[MissMiss]

So sorry to hear about your cold.  I hope you are feeling better soon.  I have had so much trauma here I can't even begin to tell you!

Last night I had to watch my 2 year old grandson with an IV in his arm.  They tested him for the flu and that RSV all the kids are getting around here.  There was no less than 10 kids there his age, all with a fever of 104.  

I guess the flu virus is in your nasal passages.  So, they squirt some water up there first, then they suck your brains out (it sounded like anyway) into a tube and that's how they test for it.  So, everyone watch out when you gotta help a young one blow their nose!

HE just learned how to do the thumbs up.  After the first bag of saline, the RN comes in and askes how ya doing and he gives him a thumbs up.  What a trooper!

Thank goodness he was negative for the flu and RSV.  I'm running on reserves today for work so gotta go.

Feel better!

miss

[jmjm530]

Kalio: the Fibroscan covers your entire liver, the "probe" as you call it is not a probe at all but rather a hand held wand that is moved by the tech across every inch of your liver if it is done right.
---------------------------------------------

Obviously you have no knowledge of the Fibroscan trial protocol. Not saying one way is better than the other, but your scan by HR was not by trial protocol. How do I know? Because I was scanned twice at a trial research site, and discussed probe placement in detail with the scan/research tech. They only do it in one spot in the trials. It's not a matter of "done right", this is how the trials are currently being done. One reason, no doubt to remove operator bias and error, especially as this machine hopefully will roll-out all over the country soon.
Again, please do your research and read my posts carefully before commenting.

[jmjm530]

Kalio: (Fibroscan)covers your entire liver
---------------------------------------------
This is also wrong even if you did move the probe around. Fibroscan works best where there is little fat between the scan and the liver. Therefore some probe points are more accurate than others. Another reason they pick the spots where they place the probe. Yes, Fibroscan measures overall liver elasticity, but it's because the elasticity in one spot correlates very well with overall elasticity, again explained to me by a scan researcher at the trial facility. I'm a big fan of Fibroscan, but it is what it is. I believe there's a special Cat Scan device in trial or research that may indeed do what you suggest -- cover the entire liver -- but that works on a different principal and the last I heard -- from Rev's post I believe -- it's currently not available to the public.

[GoofyDad]

On Fibroscan: From what I've heard of HR's protocol, his procedure does indeed cover large areas of the liver. Indeed, he seems to vary technique on an adhoc basis, based on the procedure results he interprets in real time. this probably varies considerably from a protocol that was being developed for large-scale rollout for administration by a broad workforce. It seems to me Jim's and Kalio's fibroscans were quiet different experiences.

On biopsy: My hepatologist made it quite clear to me that he expected a biopsy could vary by up to two stages. I've heard of several ppl who HR reported as having significant variation throught their livers. Makes sense to this knucklehead.

On forsee's fatigue: I should probably let forsee speak for herself, but as I understand it, what she experiences is not run of the mill fatigue. This is used to be a runner, now has trouble going shopping and can't take a walk on the beach fatigue. Caused by HCV, and relievable by SVR? That's the million dollar question.  


  

[Forseegood]

But maybe HR would really be the one to comment on this, but he mostly went over my entire liver, and that's where I thought the debate was, if youre indeed able to go "well almost" over the entire liver, the grading system is a bit different one would think, unless youre going to extrapolate "damaged" spots and give them the highest values...he went over one lobe, then on the next, he told me since he's had this machine for so long (one of the first to privately own one) and has studied it for so long, he's been able to damage control some of it's failings...he should really comment on it, but I know for sure he covered more territory than an average biopsy, my doc told me in order to get adequate samples from a biopsy (for a truly comprehensive view) they'd have to at least take 8 -10 samples from all over the liver, people won't be lining up for that biopsy, ha ha!

Maybe if HR's not busy he can comment, cause I know he should be the one to comment about his own methods< I'm no expert, he might need a break from this board from time to time, as we all do...Course Jim, you sound like you know much more about the trial fibros, but maybe that's a bit different, sounds like it is...

As far as the fatigue, I'm fully aware that I might not be getting a whole lot more energy if and when I clear, and end up getting long term sides to boot...and there is such a thing as menopause fatigue, and it started coming around the time of my menopause....and I agree that many don't feel relief from that particular hep symptom after clearing, or not clearing...but there are many people who do, I've personally spoken to them, or read them here and at other boards....

2Irish for instance, she didn't even SVR and she said she's felt better then she has in years...just from  giving her body a break from the virus onslaught I should think...I think we've both read that many here talk about having a feeling of well being, etc...that they forgot they ever had, that they "had" been thinking they were just getting "older" etc before they SVRed...till they rid themselves of the virus, and saw that it had been the virus after all - that was the culprit of many of their symptoms...I have read this over and over too, as well as the sadder stories of people who don't feel better, even after SVRing...I've maintained all along it's a crapshoot after all...I just figure I should look into it now, and get all the info...my doc wants to talk seriously with me after I get more tests...he puts a lot by the findings of the fibroscan and we're going to discuss all of it (Vertex is at my hospital after all) soon...

One more thing about fatigue, by now I figure there is fatigue, and there is fatigue...I have friends who now say they are "fatigued" cause they get really tired from running around all day, picking up the kids, etc etc etc...that they never used to feel this fatigued from all of this, and now they do...well, sometimes, I can't even run around all day, or walk around a shopping center, or do that stuff in the FIRST place...When a person has chronic inflammation, a big symptom is fatigue, because the body is trying to fight off the culprit, some people don't experience this....I also know I might be getting double-teamed by menopause and hep c, one making the other worse...I know darn well what all the downfalls are, and any upsides to the equasions too, but obviously I'm not a 1 anymore, and there's things I should think seriously about...Jim, I want to say I value youre input, and agree with much of what you say...

[jmjm530]

According to the scan researcher, the results are similar even if they move the probe to a different location. Of course, the locations must be viable -- in other words not obscured with bone or have too much fat between probe and liver. As to Forsee, neither of us are in her shoes, but even if her fatigue is caused by HCV, how many here actually have more energy after treating? I don't. Many others report less energy. Like Bobby said, it's like putting one thing (interferon) on top of another (hep c). So, she could conceivably treat, get rid of the virus and end up feeling even more fatigued. No guarantees.

-- Jim

[jmjm530]

You've certainly done your homework -- and then some LOL -- so if anyone can make an informed choice on whether or not to treat it's you. As to the fatigue thing again, menopause of course could cause that and some with some people fatigue can come and then mysteriously disappear, again irrespective of HCV.

As to how HR's scan protocol differs from the trial protocols, I've been well aware of that for some time as he's posted on this. He also -- and hopefully I'm not misquoting him -- said he would probably accede to whatever scan protocol was finally established, if and when that happens -- although I doubt even ten armed me could keep him from poking around since he apparently has turned it into an art:)

Still, the study data that correlates scan data with biopsy results, is baseed on a single point probe. And if this machine is going to be available nationwide, they probably feel it important to take the operator out of the equation as much as possible. HR aside, can you imagine what kind of wacky scan results they will get if every tom, **** and harriet nurse uses their own judgement to rate a scan? Bad enough with licensed pathologists coming up with different reads on the SAME biopsy slide, but letting scan technicians (probably who have only taken a weekend course) use their own judgment would be chaos. No, what they're trying to do is come up with a non-invasive way of measuring liver damage that can be available local in a liver specialist's office. If the trial results work out, this should be happening pretty soon. Spoke to my doctor recently, and he says they will try and get one soon.

I'm sure HR will chime in if and when he wants to, but I really see no disagreement between what he does and what I've said.

-- Jim

[honey11]

Hi Foresee!  Somehow I kinda figured you would still be sitting at 1 like Susan but yea,,,2 isn't bad at all.  I definitely know where you are coming from on fatigue and being a woman,,,it could very well be menopause and/or hep. You never know.  I have been going through a touch of that lately and sometimes I could fall asleep in the middle of afternoon.  My question and of course you don't have to answer but just wondered why you don't treat or haven't in past?  Is it because,,you are afraid of the side effects more so and worried about long term damage?  Or did some of the ones that already treated,,,scare you off with their bizarre behaviours and you were afraid it was contagious lol J/K