Biopsy

Who of those NOT treating have had a biopsy, please?

[Tallblonde]

I'm not treating, but I did have a biopsy two years ago -- a month after I was diagnosed.  I've also did a Fibrosure test 20 months later and the results were very similar to the biopsy results:

Oct. 2003 Biopsy: Stage 1; Grade 2

June 2005 Fibrosure: Stage 0-1; Grade 1-2

BTW, I'm a 46-year-old female with Genotype 1a.

Susan

[Pirategold]

Female, 61, biopsied 1988 (when liver enzymes first began to be elevated in 1987), and biopsied again in  1999 & 2004.  Initially, mild inflamation (inflammation) of the portal triad in 1988, in 1999, viral at 260,000, by 2004 - Stage 1, grade 2 with viral load at 1,600,000.  Diagnosed 1b in 1993. ALT and AST have remained elevated since 1988 in the ranges of 160 ALT and 80 AST.  Now ALT 63 & AST 36 after totally abstaining from all alcohol.  Never did drugs, but used razors at Y, and used acrylic nails in mid-80's.  At dentist twice each year but never had a blood transfusion.  Gave blood on a regular basis until liver enzymes elevated in 1987.  Am overweight and not getting much exercise.  Also am hypothyroid and on Armour.  I am taking vitamins according to the recommendation of the book Prescription for Nutritional Healing and using B12 2.5 mg sublingually.  Besides multiple vitamin, I'm taking extra C, Calcium/Magnesium, Dessicated Liver, Fish Oil, HCl (digestive enzymes), and bioflavanoids.

Pirate

[Pirategold]

I was 44 when my liver enzymes became elevated suggesting that that is about the time I contracted this dreaded disease, but am not sure whether that is true or not.  Actually, I would have to say that it has been both a curse and a blessing, because I have altered my lifestyle and substantially reduced my alcohol intact to the benefit of myself and my family and I have gained substantial compassion for others who suffer chronic diseases.

Plus it has forced me to look seriously at my mortality and to value life and everything good.

Pirate

[Tallblonde]

You may want to do some reseach on Curcumin (aka Turmeric).  It's the latest thing I've added to my regimen. Its anti-inflammatory properties may be the thing you need to bring those liver enzymes down.

Susan

[Tallblonde]

We posted at the same time.  Yes, I agree that some good things do come from this diagnosis.  It's not all bad.

Susan

[friscosue13]

Thank you.  I'd rather not biopsy and am looking for a doctor who will do a FibroScan or some such.  I have an appointment with a new doctor in two weeks, who I hope will do so (although his receptionist says he requires a biopsy -- perhaps no one ever asked otherwise).  I'm female, 50 years old (can't believe how that looks in print -- I feel 25), 2b, 24.4 million vl, alt/ast just out of range, recent sonogram shows no damage except a bit of fatty liver, according to techician.  Dr. never followed up on sono which is why I'm doctor shopping.  I'm treatment naive, and I think I have time to wait for VX-950 or some such, but would like a FribroScan to ascertain that's the right decision.

[Tallblonde]

The only way you can get a Fibroscan is by participating in a clinical trial.  There are three U.S. sites that are currently recruiting patients.  This link will tell you more:

http://www.clinicaltrials.gov/ct/gui/show/NCT00125762


The Fibrosure (blood test) is something you can get more easily, right now.  My family doctor ordered mine back in June and my insurance paid for it.  Can you ask your family doctor to order one for you?

Susan

[friscosue13]

I've also been going the "natural" route.  Look for "Herbs for Hepatitis C and the Liver" by Stephen Harrod Buhner.  It contains, among many other things, a turmeric protocol.   I'm basically vegan, but the occasional times I do indulge in meat, it must be hormone free; only whole grains and pastas; tons of vegetables.  I'm not big on fruit, but do squeeze in one a day, usually at breakfast, which I've learned is a must.   I swim a mile a day during the week and walk a lot.

[friscosue13]

Thank you so much!  It's good to go to an appointment armed with something concrete.  As I don't yet know my new liver dr. personally, my primary is so anxious for me to treat (as it is he who diagnosed me), that I'm confident  I can get him to order the test for me.  I'm seeing him this coming Tuesday.

[Pirategold]

Thanks for the recommendation of Curcumin (aka Turmeric).  I am also drinking pomegranate juice daily and a drink I have become very fond of is 1 t of Bragg's organic cider vinager w/honey in a mug of hot water.  It's wonderful.  I have fogotten exactly it's value but apparently I was impressed enough to start and it has really become a treat.

Another treat my whole family enjoys if a bowl of frozen blueberries with non-fat whipped cream w/almonds sprinkled over top.  Wonderful!

Am a fresh garlic lover too!

Pirate

[Tallblonde]

Frisco: It's probably a good idea to take a copy of the FibroSure fact sheet (see link below) and the test order number: #550123 so your doctor and the lab people don't make a mistake and order/process the wrong test.

http://www.labcorp.com/pdf/HCVFibroSureLabFacets.pdf



Pirategold:  I've been munching on a pomegrante this afternoon!  Yummy!

Susan

[friscosue13]

TallBlonde:  you're a Godsend -- thanks again.

PirateGold:  I, too, am an advocate of raw apple cider vinegar -- I use it in salad dressing and have used the the combo with honey as a sleep aid, among other things.  The definite book is "Cider Vinegar", by Cyril Scott.  It's pretty much a classic.  Also, see my note, above, to TallBlonde, re: turmeric.  Please excuse all the book references, but I'm a whole foods cook/chef by training and avocation.

[friscosue13]

Sorry, PG -- I meant to type "definitive" book -- not "definite".  In any case, do check out both books.

[mistybean]

I did have a bio but it was 8 years ago.  I was only 37 at the time and had a normal liver: stage 0/1.  I have no clue what state me liver is today.  I did drink from last bio to prior to treatment.

[NYgirl]

I am so glad I had the bx it wasn't that bad and lasted such a short amount of time AND I AM A MAJOR CHICKEN!!!

I had enzymes in the 200s figured something bad was going on.  I used to drink Mr. Smirnoff like a FISH.  Had a good drug history of close to 30 years.

When dx'd I thought I would never be able to quit. Amazingly my liver is so important to me I can't imagine putting any alcohol in my body again.

I am Stage2 Grade2.  I am POSITIVE that the hardcore drinking really elevated this status.

As soon as I quit drinking and started tx...my enzymes dropped to 20 and 16 from the 200s.

I am glad I had the bx because I know exactly where I stand now...and after tx I intend to get another and see just how much my liver has gotten better!  :)

[jezzbe]

I am 52yr./f geno 1, high vl, Fibrosure test says stage 1/2 grade 0, ALT & AST high normal, am trying to decide about biopsy. Will only do if I feel I can get through treatment, have 3 kids age 13, 9, & 3 and am not sure I could take care of them on treatment. I have been reading this board over last month and have learned so much. WOW! Does anyone have more  info on Fibrosure results matching( or not matching) biopsy results?

[NYgirl]

I am a single mom with a 15 and 17 yo.

It's DOABLE....there are good days and bad days but overall you can do this!

The bx is so important in DECIDING I really think.  It's quick and relatively painless. I figured why not be armed with every bit of knowledge I could possibly have in fighting this disease!

If you ever need to talk...I'm always around.  I decided to treat FOR my children. That is what keeps me going on during the bad patches.  I think they would like to have me around a long, long time.

Once you know your grade/stage it will make the decision much easier for you.

Best of luck and welcome!  :)

[friscosue13]

How did your C manifest itself -- in what way were you very sick?

[NYgirl]

The way I looked at it - I had nothing to lose right except a few moments of discomfort (although I was sure I was going to be TORTURED!) and I would gain so much knowledge.

Once you get started down the road you will be fine - you are proactive in what you are doing and already on forums asking questions and stuff. THAT is the most important thing you see and I really believe (which I learned HERE) KNOWLEDGE.  You just can't fight anything with a blindfold on LOL.

The doctors are caring but have so many patients - nobody is going to care more about your results than you. Always remember that.

I'm glad you are here - you know you are incredibly strong too and I can tell just by the few things that you have arleady said!

Just hold your kids in your heart...they will get you through treatment. I promise.

[lackalustre]

i never had a biopsy either.  but was very sick with hepc.  i treated in 03 and cleared.  geno 2b.    i recently had a fibrosure and it was in the very low range of fibrosis and portal fibrosis.  i dont have anything to compare it to but i plan to have another fibrosure in a year or 2.  just to see if the numbers drop any lower than presently.  since fibrosis is revesible.   im wondering how those who have had fibrosure and biopsy  compare with their results.  this is the first thread ive seen where someone said their fibrosure and biopsy were exactly the same.

[jezzbe]

Thank you I have read alot of your comments and that is pushing me to consider biopsy. I am meeting with doc next week and think he will be pushing fot biopsy, too.
Best of luck to you! you seem unbelievably strong as do most here who are undergoing treatment!

[dancegirl54]

Geno 1a, 50 yr old female Single mom to 4, one is married, two teenagers that are hep C positive and one in elementary school! I work like a dog to support my kids and am concerned about how treatment would affect that ability. I also carry the health insurance on the 3 youngest.

My biopsy results (this year) stage 0 and grade 0-1
Fibroscan 7.1 which is consistent with what the biosy shows
Alt, AST was 29, 34 in July, now 44,49
Stopped taking black cohosh for hot flashes and will recheck in 6 weeks to see if that's the cause-that was the only new thing
GGT is elevated as well

My 2 kids that have it have not had biopsies.  Daughter will have one in January only because of spleen enlargement - she refused to have one up until now, son is under 18 and we'll wait

[jezzbe]

What is GGT and wat does elevation mean?
What is risk for kids having it, I had amnio with 2 and read that is a risk as well as birth. I have not had kids tested only hope thneir will be newer treatments with less sx for them.

[NYgirl]

Supposedly the chances of passing it at birth are VERY very low (somoene will have the number I am not so good at remembering those any longer).  But it seems to ME that we are a a pretty small community in here and there ARE a few children that HAVE gotten it that way so it makes me wonder at those numbers.

I had both my children tested the week after I was dx just to be sure. I didn't think that they COULD be but when I realized that they are 15 & 17 and I've had this 25 years supposedly...I realized I was WRONG and they sure could have it.  I thank GOD that they are negative and I pray so HARD for people like Dancergirl who not only have the STRENGTH to deal with their own dx but their children as well.  Now THAT is one STRONG STRONG woman who will do fantastic in treatment because she has that INCENTIVE and DETERMINATION :)

[Tyree2005]

I too debated on having a bx but everyone on the board felt it was neccesary before going on tx.  I am 55y/o f with 1b. I had my biopsy last thursday and like they told me it was a breeze. No pain at all the worst was them trying to start the IV and drawing blood they stuck me 4 times. I will be starting tx soon with out any thought. It's a must for me to kick this virus out of me. I must get myself back in shape to enjoy my grand children. Go for the biopsy and that way you will know for sure what shape your liver is in.
peace and love to everyone.
Tyree

[NYgirl]

LOL what a difference in you already.  I remember when I came to the board with all my billion questions - thank GOD we get such good solid educated ADVICE in here.  I really thought it was going to be horrible too and it wasn't much at all.

Just look at all the real knowledge you have to base all decisions on once those results come back!

Let us know the minute you get those results back.

:)

[cuteus]

as a baseline, a biopsy is the best thing to have for determining damage, they test the tissue to see if there is AIH and they also do iron stains to rule out a problem with overload.  You can not get the extras with the scan. THe fribrosure is a poor substitute for bx, it works best if paired with the fibroscan.  If anyone wishing to wait does not get a biopsy, a decission is made without the complete picture on hand. Complications are very rare with the bx nowadays. And they are relatively painless during and after. I suffered more with a tooth extraction. Follow ups after bx is another thing, I would choose a fibroscan for that, based on the latest articles from the AASLD.

[jezzbe]

How does one get a fibroscan? I live in Boston and read on this forum that Dr. Afdal can do them. I have an appointment with him later this month but am wondering if I will need to be in a trial in order to get one?

[anise]

I finally got my biopsy after knowing I had Hep C for 5 years.  I am a 2b and the doctors weren't going to treat me back in 2000 because of some Pegsys delay.  Well, I decided to wait and took Chinese herbs.  However, I couldn't stop wondering what condition my liver was in....  So I got one in late Oct. of this year.  Am I glad I did!  I am grade 2, stage 2, and am going to go for the treatment in March.  The biopsy was easy, as they gave me something to make me drowzy, I hardly felt anything.

[dancegirl54]

TO NY Girl and Spacecoast
Thanks for your kind comments - that's why I keep coming to the site for the support and encouragement

To Jezzbe
GGT is Gammaglutamyltransferase, another enzyme that can be elevated in liver disease
As far as I know, passing hep C at birth is supposed to be rare but I had 2 out of 4 that got it. The oldest and the youngest were spared and these 2 were very close together. Theories are that my V/L was very high at that time in my life, who knows? They were born at the same hospital and the other 2 were elsewhere so maybe there was more blood transfer than normal? It's not productive for us to dwell on how it happened, only that it did and what can we do about it now.
As far as Fibroscan in Boston, I am in a study and I believe that you have to be in order to have one. The machine is not approved for use in the US yet, that's what they are trying to get- they have to do the same studies that were done in France.  In Boston, a requirement is that you have to have had a recent biopsy, so it would NOT be a replacement for a biopsy, you could potentially have one in addition to. What part of Mass are you from? I am on gmail as dancegirl 10

[scubadiver30]

I'm a 43 year old male. Geno 1a/2b VL 5 millon
Fibroscan F0-F1 - ALT 81/AST 39. Everything else normal range
No symptoms whatsoever just yet...
I've been wanting to get a bx but my drs are reluctant and keep telling me to wait & control with ultrasound & blood panels & fibroscan every year. I even talked to dr Adfhal to travle to Bosotn and he said Fibroscan is reliable at low levels. He said I should believe it.

Guess my drs don't wanna treat because of my double geno and high VL so they're waiting for the PIs.. If I experience a deterioration in my QOL in the next 6 months, I'm gonna travel to the States and get a bx and start combo asap. If not, I will stick to the tx start projected date of 2007
Regards
Diver

[jezzbe]

Thanks for all the info! I live right outside of Boston, what is gmail? ( i feel soo stupid asking). Where do you live, you are so lucky that you are stage 0! I am close to stage 2 and will have to treat soon I am really praying for these new protese inhibibitors and hope I can wait for them. I am also worried and feel guilty about my kids. I have not had them tested yet. I feel helpless in that regard. good luck with your daughters biopsy!

[dancegirl54]

I live right outside of Boston too!
How long age were you diagnosed, how old are you - I dont remember seeing your"bio" but I dont read everything.  gmail is an email provider. gmail.com
We are not supposed to share email addresses on this site but I was giving it to you - use it if you like!

[friole]

Hey - just wanted to pop in and say how touched I was about your son, and his understanding of hep C and how you are handling it.  You are a remarkable lady.   My brother lives in Chatam -- I called him this morning because I was watching the weather channel and saw the snow and knew he would be at home (and not fishing today).  Enjoy the snow.
friole