'Watch and Wait' LABS

When someone has chosen the "Watch and Wait" course, does anyone know which blood tests are used on a regular basis to monitor progression of Hep C?

Specifically . . . which tests, by their test name.

Also how often are these test done?

Thanks in advance, bless your all.

~DoMusic~

[Bill1954]

Liver histology is probably the most important consideration for W&W. Therefore, a percutaneous liver biopsy every few years (depending on the current assessment of damage) will yield the most pertinant results. Other non-invasive measures such as Fibrospect/ Fibroscan might be appropriate; ask your doctor for his input on these as a possible alternative.

A complete blood count(CBC),and comprehensive metabolic panel (CMP) will paint a pretty good picture of your overall health; you might ask your doctor for a standing order, and again get his input regarding interval. While a hepatic panel (LFT's) is interesting to help confirm ongoing inflammation/damage, the results are of questionable value. Many of us have advanced levels of damage, with persistently normal ALT/AST values. There are other biochemical markers that are predictive of frank cirrhosis, but hopefully you're not at that stage right now?

I think most here will agree that ongoing viral load assays probably don't yield much value in determining when or when not to get on the treatment wagon.

I hope this helps a little, and that I didn't respond too obliquely :-).

Best to you,

Bill

[ladybug52]

When I was taking the wait and see approach, I got lab slips for comprehensive metabloic panel. It shows  fasting glucose, liver enzymes, & complete blood count. This also gave me a baseline for my hemoglobin before starting tx.
Good Luck.
bug

[bobbyullc]

a biopsy every 5 years was recommended to me. if the new drugs pan out it will be long before 5 years so if you have no sides from the hep c you will be in good shape.

glad you do not have to go through this presant date tx. i waited 9 years and svr went from 9% to 50% with fewer sides.

[domusic]

Thanks to all for your comments and advise. One thing I am interested in is exactly what things do they watch for either directly associated with the Hep C, or extra-hepatic manifestation, or anything else that may reflect on liver health, or overall health, especially effecting other vital organs.

I keep current on copies of all my labs and just want to monitor everything they do and the test results.

Found out about Hep C back in October, 06. Likely been infected since 1973.

Thanks   ~DoMusic~

[jmjm530]

Not to be flip, but the best drug tests for "watch n' wait" are the ones that an experienced hepatologist will order. In other words, it's important to be under a liver specialists care if your HCV positive. As stated, depending on your individual stats, liver biopsy may be ordered every 3-5 years. Alternately, they may order some less invasive tests. As to "extra-hepatic manifestations", again a liver specialist would be the one to help you sort out what symptons, if any, are being caused by Hep C. For many, it's an asymptomatic condition.

All the best,

-- Jim

[domusic]

I Understand what you say about a liver specialist. There's one on my team at the Cleveland VA. The head of the Hep Team here is an Infectious Disease specialist and heads the Infectious disease clinics at University Hospitals in Cleveland, and is a professor at the Case Western Medical School. I also have the head of Gastrointerology as well as a Liver doctor on the team.

As you all know, you never get all of your questions answered with doctors so I usually get regular information releases from the hospital to fill in the blanks regarding my questions. I try to look at every source of knowledge I can to stay well informed. One of the best sources of knowledge is this forum by far, and for this gold mine I am very thankful.

Take care,

~DoMusic~

[chcnme]

Hi Domusic. Yep - music is tops, and yes it helps!   Glad you have a great VA where you are.  We have a great VA in this state.  I can't remember -- but have you had a liver biopsy?  If you haven't, well - just please get one.  Do not make this decision on waiting until you know what a biopsy shows.  A baseline liver biopsy on you will be imperative in the decision making process for watching and waiting.  US and labs are ways to tell certain things, but they are no OK on their own, alone, for a decision on whether you can wait (or if you should treat now).  

I've been watching VX950, and oh..how I hope and pray it'll make it!  I go to Duke Liver Clinic, one the major sites for Vertex research (and others, too.)  2007 is going to be the year, so they say, to watch VX950 (how it does in the trials).  Everyone will pretty much know in this next year from what I've heard how much longer we may have to wait until it's marketed  (2 - 3 years / perhaps 4 - 5  yrs / we'll know something).  Everyone has their ears and eyes peeled!   I was devastated when I learned the 2 prior weeks of treatment I had in 2003 knocked me out of the loop on the VX trials.  My doc tried to get me in with a waiver, but it didn't fly.  He has recently offered me a trial with polymerase inhibitor called HCV 796 (for treatment naive and nonresponders) with the standard of care  (peg and rib for 48 weeks).  It's not shown the potency the VX950 has shown, but my doc says it's looking really good.  I'm still flippy floppy on the decision.  It's a very hard decision to make.  One day my heart and head says "do it"; the next day it says "wait for VX950".  Decisions Decisions!  

Being newly diagnosed can be overwhelming (or at best confusing - lots to learn).  Try not to let any horror stories on treatment scare you FROM treatment.  The newer treatments are expected to be given as possible a "triple therapy" (in other words, the sides won't necessarily be any less and might be worse for some).  With the newer treatments, the treatment duration MIGHT be reduced (might not be).  The hope is the success rate with the newer treatments will go up for Geno 1 from apprx 50% to something much better (rumor of possibly 80, even 90%.)  Those improved odds will certainly make treatment seem a lot more worth enduring.  

Be kind to your liver, and make your decision on treatment after you have learned everything you can about your liver.  
Wishing you the best in everything!  Let us know how you're doing.

[chcnme]

Hi Domusic.  I've been infected since 74, diagnosed in 2003, tried tx in 2003, had to come off, have been in watch and wait since.  Been under care of hepatologist for about a year and a half, seeing him every 3 months for physical exam and labs.   He has all medical records and diagnostics from past 5 years  (for me that was GP, GI doc, hematologist, cardiologist, and psych).  Any labs I have done here (at regular docs) gets faxed to him.  

First appointment there, he palpated my abdomen, felt my liver, looked at extremities from toes up to the thighs, back of legs,  checked ankles for edema, looked at spider nevi on my neck and upper arms (he said they were not an indication of any progression - said that many people with Hep C and mild damage had them and that it's common).  He checked my palms for redness, asked if I had ever had any, (I did once, after acute hep), I don't have any currently.  He asked me to walk a straight line across the room, stand on tips of toes, stand on heels, made me touch my nose with my first finger  (checking neuro, I guess), he made me hold my hands straight out with fingers stretched out and keep them still.  I asked him what he was checking for and he said tremors that are sometimes seen with advancing liver disease.  He also checks my strength in legs and arms.  He asks how I feel - ask if I'm in any pain anywhere, having any nausea or vomiting.

My first appointment with him, I asked him how he would know when I wasn't fine anymore (liver wise) and how he would know I was running out of time as far as treatment was concerned, and he said they would be watching labs and my physical appearance.  I asked him specifically about the normal ALT / AST thing, and he said they watch for increases in those, too, and get concerned when they go up and then remain elevated, and that they look at all the other labs, too (the whole picture.)   On waiting to treat  (since I was scared something bad would happen and would happen fast and leave me with no options)  he assured me that it was not like a scenario where one month I

[domusic]

Thanks Chcnme, You've been very helpful. As a newly diagnosed HCV I'm still grasping for answers. My U/S and blood tests say mild with "near normal" liver function, as they put it. They said I could W & W or treat, my call.

With all the unpleasant Tx side effects I've been hearing about here and elsewhere, and with some promising new treatments soon to become available which really address the difficult to treat type 1, I think, at least for the short term, I'll do the W & W.

It's amazing all the things they've tested me for with all the labs. They even did the drug screening (cocaine, opiates, etc.).

They even knew that I had Mononucleosis as a teenager. I'd even forgotten about that. My impression of the Hep team at the VA hospital here . . . Very much on top of it! Their Hepatitis web is VERY informative. I hope all the forum readers here can use it as an information resource.

Chcnme, have you been following the VX950 news. It looks to me like this will be a God send for us type 1's who are the more difficult to treat. With better SVR rates, less side effects and shorter Tx time (hopefully).

My hope and prayers are with you and all the other hep'ers here.

Very best regards,

~DoMusic~ It helps . . .

[domusic]

Incidentally the VA has an excellent website for Hepatitis.

http://hepatitis.va.gov/

Great resource for both Patient and Physician.



~DoMusic~

[domusic]

Thanks again for your thoughts chcnme, So right about music. It is my life's work both as a player, and I also make musical instruments, and have so since the early 70's. I guess I'm fortunate in that respect because being self employed this way I can bow to my fatigue when necessary. At about mid day I feel pretty exhausted and have to "Nap". It really helps too and afterwards, I have to liberty of going back to work as needed. I can work through the day or through the night. And if my mind and my spirits need a boost, I'll just grab a guitar or a fiddle and just sit down and sooth that savage beast, or just turn on the stereo. It's a blessing most appreciated by a musician.

My Dr. actually said a Bx wasn't necessary at this time but if my labs indicate it down the line, it would be recommended. So until it's necessary, I'll not run any risks, even if the risks are low.

I know the VA here is sometimes involved with trials but I'm not sure exactly how. Maybe in cooperation with the drug companies doing the research. I understand the phase III trial for VX950 will soon start. I am inclined to look into getting in on that if I can. It would be great to get a cure with it before it's available to the general public, but then again I could be part of the group that gets the placebo or however they work it. I will have to look into it.

I was a bit devastated when they told me I had Hep C. But not really knowing much about the disease, it was a slow process realizing what the disease was all about and slowly gaining knowledge about Hep C, so I guess it was a slow motion devastation. Much easier to accept. I've spent "All" of my free time practically, learning about the disease, studying virology and anti-virology as it were. It's very in depth for a novice but fairly understandable. I should probably limit my studies, but I've also been reading about other viruses in the Flavivirus family. Very interesting . . .

I spent most of 2006 (since April) getting sicker with fatigue being the major complaint. By July, I could hardly get up and walk across the room. It really put a hamper on my working and I pretty much exhausted what little savings I had in reserve, from not working. Fortunately when I went to the VA finally in July I found some other Non- Hep related issue, like blood pressure, that have been address and over all I feel much better having these issues addressed. The problem with Tx, is if I get to the point I loose too much ability to work, I'll be in big trouble. So a better Tx program will be very welcome to me. So I Wait & watch . . .

Take care of yourself and thank you!

Regards,
~DoMusic~

[chcnme]

Hi Domusic! Now that I have a break, I can sit down and shoot the breeze :)  Cool about playing the fiddle and guitar!  Really cool.  I play piano.  In fact I

[domusic]

Good to find another musician. Over the years I've always been able to identify with another musician as they have a unique quality common only to a musician, or similar artist. I've tried getting away from it a few times in my life but found myself slowly fading away. Getting back into music usually brings me back and you are right, music makes all hardships tolerable. Must be a spiritual thing.

I've always want to learn the Irish accordion. My interest is mainly Celtic music (at least for now). It began with good ole Rock and Roll and folk music back in the early 60's and migrated on through country rock, to bluegrass then to contemporary Folk and Celtic and European folk. I've done the band thing but in my town, in order to make a living with music you have to play in bars and I don't drink (fortunately with the Hep). I've been a studio musician and played on special recording projects with some fairly famous artist/s and have been offered many jobs playing but didn't want to travel all over the country so declined. I've also made a few instruments for some well known recording artists. I make a decent living now but not much more. It's a job I wouldn't mind doing till the day I die so I have no intentions of retiring. I consider my retired already.

One of these days I'll have to figure out how to hook up with you outside this forum which I understand is forbidden. It would be great to gather in the woods for a jam. I've done that a lot in the past.

Take care,

~DoMusic~

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