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Checking in after GI visit--June 30, 2009

Jun 30, 2009 - 10 comments
Tags:

biopsy

,

treatment

,

virus

,

test

,

Q&A



Got home from GI earlier. Here are the things he has to say:

1.My liver enzymes have gone down from (ast/alt) 90/66 respectively, to 13/20 respectively.

2.Viral load 561(titer) (confirmed by repeat testing) yes, fivehundredsixtyone...no typo there. He said it's the lowest he's ever seen, and only recognizable due to today's technological advances in the sensitivity of the testing. Used to be that you were negative if you were below 50,000, then you were negative if you were below 10,000, then below 1,000, now the test today shows less than 50 as normal. So, if I had been tested 10 years ago instead of a few months ago, I would have shown up as normal, and therefore, negative for Hep C antibodies.

3.No genotype could be detected because of not enough virus in my blood to sample (not enough quantity, the lab said).

4.TREATMENT IS UNLIKELY..due in part to my normal liver enzymes, and in part to my low viral load. Says enzymes indicate either a great response by my immune system, in which case, interfuron is unnecessary, or the HCV is so bad, my immune system has stopped fighting it...unlikely.

He offered me the option of whether or not to do a biopsy bearing in mind it probably would not affect his inkling not to treat. I accepted, saying I want as much information as I can have about this, so he wrote me a referral to have it done.

I asked him if, hypothetically, I didn't see him again for 6 mos, or a yr, what would he expect my 561 viral load number to do...go up? down? stay same?  His answer was the PCR can vary greatly even within a day, and is no indicator of liver damage; two biopsies (now and later) will better tell the story of liver damage or not. Says only 50% of people with HCV ever go on to cirhossis (sp?)...Unless one drinks alcohol...then odds go up to 90%

I also asked him, since my viral load is so  low, why not treat now? Wouldn't it be easier to get rid on NOW? He says no..either I have the virus or I don't, and the viral load doesn't necessarily mean treatment. I asked if I shouldn't be having fevers, sweats, chills, flu-like symptoms if my immune system if fighting it right now. He said no.

There were some other findings unrelated to HCV indicating more tests...Upper  G.I, LLQ pelvic ultrasound, CBC, PT, PTT tests before biopsy.

So, I think this is another case of hurry up and wait :]  I'll keep writing; maybe not so much for you all, but so I can keep a record for myself. But, perhaps, as I post my Q&A with my GI Doc, he'll be answering questions some of you have as well.

Take care, you..yeah, YOU!  :]



Comments
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220090 tn?1379167187
by Andiamo1, Jun 30, 2009
The biopsy is the key to any decision regarding treatment.  If you have very little fibrosis, you can afford to wait.  If you are stege 3 or higher, you have to treat as soon as possible.

The longer you have the disease, the higher the probability, you will develop cirrhosis.  Most people will never develop it.  I had the disease for many years and did not know it.  I drank during the 25 years I was unaware (mostly wine with dinner) of it and ended up with stage 3.  You are young, so the is not the case.

I wish you the best and good luck with the biopsy results.

Eric

903604 tn?1274717574
by averagegeek, Jun 30, 2009
Hey Andiamo, thanks for the well wishes.

Can you tell me what the stages are? I assume 1 is earliest, and 3 later, but are there stages after three? Can the biopsy indicate a level ZERO, indicating no liver damage? And what about the case stories of people having unexplained "spontaneous remission" It's not unheard of but very rare from what I read. I wonder just what the chance of that is.

Good luck to you, too.

~Charlotte

Avatar universal
by winner727, Jul 01, 2009
wow your back . I got back from a couples days off .just saw your journal .Im not sure what to make of the low vl # ,but I dont think you should treat . with stage zero ,why not wait for    "  add on drugs  "            to peg /riba ?  Im certain the biopsy will tell    .I thought that if they cant find a geno type , how can they give you a treatment .what dose ?, how long ?     did you get the   psyc           letter yet ?  I hope you can wait for better than  50 /50  chances  .Im on shot 18 coming up . doing okay  had to cut my nice weekend at the cape by a day ,too much activity . ya get " burnt and tired " quick on these meds  .      good luck ,nice to see you back !         bob                  

903604 tn?1274717574
by averagegeek, Jul 01, 2009
Yep, I'm back. I haven't been here much cause I haven't had much news since my last post; was waiting for more info to share.

One thing I forgot to post is this: GI Dr. said PCR can vary three-fold in a single day, from 1/3 the number the lab finds, to three times the # within a single day. That's why it's not a good indicator. He seems to think that if no damage is being done actively, (as measured by ast/alt) that a wait and see approach is a good thing for me. The liver biopsy is to kind-of get a picture of what's going on in it right now, as a baseline, so it can be compared to later biopsies, and comapre damage from time to time.

I happen to think that "not enough material to test" for genotype is a good thing. I don't much care what type it is, as long as there isn't even enough of it to test...and the Dr's preliminary decision not to test makes the matter a moot point anyhow.

I think I mentioned that he told me, 'I'll always be positive for active Hep C, and I'll always be a carrier, BUT there is a good chance it will never make me sick' eg. liver damage. (hence the 50% figure in original post).

He says take good care of my immune system, exercise to reduce belly fat (and fat and elevated enzymes in liver), don't drink alcohol, eat well, Etc. I am already doing those things since my 1st Appt. with him...lost 7 inches of fat, mostly around my midsection...so that couldn't have hurt my recent tests either, I suppose.

Keep on Keepin on..

~~Charlotte

220090 tn?1379167187
by Andiamo1, Jul 01, 2009
The stages are 0 - 4 with 0 meaning no scaring and 4 cirrhosis.  There are various stages of cirrhosis, but I forgot what they are.  In any case, given the short time you have the disease, you are probably stage 0.

There are many new treatments about to come on the market, so have you thought about waiting untils the new stuff is available?  The treatments are shorter and the probability of SVR much higher.

Enjoy your music!  I am a music lover as well; most of my family are professional musicians.

Eric

903604 tn?1274717574
by averagegeek, Jul 01, 2009
Hey,

Thanks for stopping in. I'm glad to know that a stage 0 does actually exist. My GI says no treatment for now based on my liver enzymes. They're not just in the normal range, but SMACK DAB in the middle of the norm. range...couldn't BE any more normal. So, yes, watchful waiting is in my future. The biopsy was optional, and I chose yes. I want a baseline to have something to compare to in a year or five years, or whenever.

Funny you mention music. I woke up with a song in my head this morning, which has replaced the previous song of the last 3 days. Yay!!! Thank my lucky stars, I can't even remember what song was stuck there the last 3 days, and I'm not gonna try hard to remember it, either. The one I woke up to this morning is by Bruce Hornsby: That's just The Way It Is....."Hey little boy, you can't go where the others go, cause you don't look like they do. I said, hey old man, how can you stand to think that way, did you really think about it before you made the rules? He said, that's just the way it is. Some things will never change. (oh, but don't you believe it).

My family all play something. I just sing. My Uncle, Scott Sanchez, is a pro classical guitarist and music professor, And his Dad was the inventor of "Muzac", made famous by elevators nationwide. lol. :D

Anyway, I have to scoot if I'm ever gonna make it outta the house today to go to the gym.

Take care of you.

~Charlotte

220090 tn?1379167187
by Andiamo1, Jul 01, 2009
I love Leonard Cohen ( He was a 60s hippy like me - LOL):

Oh the sisters of mercy, they are not departed or gone.
They were waiting for me when I thought that I just can't go on.
And they brought me their comfort and later they brought me this song.
Oh I hope you run into them, you who've been travelling so long.
Yes you who must leave everything that you cannot control.
It begins with your family, but soon it comes around to your soul.
Well I've been where you're hanging, I think I can see how you're pinned:
When you're not feeling holy, your loneliness says that you've sinned.

Well they lay down beside me, I made my confession to them.
They touched both my eyes and I touched the dew on their hem.
If your life is a leaf that the seasons tear off and condemn
they will bind you with love that is graceful and green as a stem.

When I left they were sleeping, I hope you run into them soon.
Don't turn on the lights, you can read their address by the moon.
And you won't make me jealous if I hear that they sweetened your night:
We weren't lovers like that and besides it would still be all right,
We weren't lovers like that and besides it would still be all right.

233002 tn?1316027966
by glucklich, Jul 01, 2009
Eric,
LC is a favorite of mine as well. Although while on tx his sad songs filled my head without relief.

But as he says:

To the men and women who own men and women.
Those of us meant to be lovers will not forgive you for wasting our bodies and time.

Hope all is well..

233616 tn?1312787196
by merryBe, Jul 02, 2009
Well, I'd like to chime in with "so long Marianne" and have a good life, but it sounds like your doc beat me to that punch.

Problem is, what pop's in my mind is "that's no way to say goodbye"...also an Lenny tune....but hey..
gotta say hello before goodbye...a doc should be an educator,,,not a "no big deal" type. It's truly amazing the nonchalant attitude some folks come away with.

So hello, first of all. I'm Merry, but not real happy with what's passing for patient care between you and your doc.
What is his specialty first of all?

my son had a VL of 27 on one test, and 3 others with no VL, the most sensitive test >1 revaled no VL.

The operative concept is do not treat unless you have more than one lab confirm that you A. have the virus and B. have given your body a chance to respond on it's own....15-20% will clear this on their own.

Also some positive labs turn out to be slide contamination or machine error due to improper maintainence (cleaning).
More reasons to have extra labs done if you have not. I'd have another lab (not the same one) do another set of tests to confirm results before I'd even have a biopsy, knowing what I now know. Remember labs aren't dangerous, biopsy can be, so make sure you have the disease first is all.

after that, if you have no damage yet, then wait for better treatment is the usual advise, although waiting for years and years may not be wisdom. The reason is that high VL has been established as a factor in tx failure, so waiting until your VL is in the millions has it's own set of risks. My suggestion would be to learn a lot more first, then make an informed decision as to when to treat. You are young, and your immune system may keep things at bay long enough for a better cure to be available, but as you age it will get harder for the immune system to fight the virus, youthful people do have a muh better treatment result then us grannies do.

The other subset of reason not to postpone treatment forever has to do with much recent research showing that the glands are greatly diminished in their outputs by the progression of this disease. In fact the studies are all indicating that this virus does cause a progressive system wide negative effect. My take is any virus you carry continual will take it's toll, this virus is more insidious than most, HIV being the known biggest bully, but HCV isn't a lightweight either, even though some docs treat is as such. My experience has been that I knew of the research on pituitary, pancreatic, thyroid and brain dysfuntion brought on by this disease, and much of that resent research was not even known at my clinic even by the docs...so even if you are asymtomatic for years eventually every rooster comes home to roost. The casading effect of endocrine signalling dysfuntion basically means that HCV is slowly but surely setting up it's host for a whole series of very serious diseases.
I was amazed when going to PubMed how much new info on thyroid and HCV, pituitary and HCV, diebetes and so forth...the new studies show much higher rates of dysfuntion than in the general populace. Meaning, Hep is itself breaking down the whole system. Maybe not as fast as HIV, but it is doing it. These are both retroviruses, the sneaky, adaptive types that destroy our RNA/DNA and/or immune systems and are not to be taken lightly.

I'd bear all this in mind and educate yourself. DO NOT expect your doctors to know all about a disease they treat. Most liver specialists are so busy these days they have not got near the time we do to keep up with the research. The better the doctor, the more busy they are, so it is no surprise that they cannot keep abreast of everything.
Even an intelligent retired doctor or patient cannot keep abreast with the plethora of new research.

mb

903604 tn?1274717574
by averagegeek, Jul 02, 2009
Dear MB,

My Dr is  GI with a specialty in nutrition, and I've only seen him twice so far. Unfortuantely, My insurance carrier has only one lab they work with, Quest Diagnostics. If I were to have labs done anywhere else, it would cost me out of pocket a lot of money I can't afford, hell, any money is unaffordable right now...I'm disabled and my husband is on unemployment. :(  Sounds like good advice though.

In one of my earliest posts I inquired about other damage and symptoms of HCV besides liver failure, and I don't recall anyone having a really good answer. I did a little reading about HCV, and found it can in some cases cause kidney failure as well, but I couldn't find much more info out there about it. You sound like you've found some good places for up to date information, and I would greatly appreciate it if you could send me some links to them. In the mean time, I will go to PubMed and check it out. I haven't heard of it before.

To be honest, I wasn't very disappointed to learn of the no treatment yet stance, what with hearing all the horror stories about sickness, depression,  up to a year of flu-like symptoms, and so forth. The thought to forget I have it is very enticing. My Dad is encouraging me to have a second opinion about treatment. I'm in the watch and wait group on this one, as I'm really hoping for the spontaneous clearance miracle. 15-20% is nothing to sneeze at.

So, speaking of labs, I have an appointment to go have more blood work done today in preparation for the biopsy on the 7th. I know the biopsy has risks, but it does sound like a sure fire way to tell if I have HCV, and if so, how bad. The GI said VL doesn't always correlate to liver damage. Some people have a low VL and much fibrosis, and others have high VL with little fibrosis, so this is a good way to have the whole picture. And he may actually see the results and decide to treat. Like I said before, he has an "inkling" not to treat, but it doesn't preclude it. He is willing to do what it takes for me to become/stay healthy...he just knows what tx can be like for people, and wants me to avoid it if possible.

Well, I have to go get ready for lab work, so take care, and send me those medical info sites if you will, so I can make more informed decisions about all of this. Thanks.

~Charlotte

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