Philzone.org Discussion Board: Archive 2004: Hep C Archive: Had my 4th biopsy-what do you all think I should do?

Hi all,
I just got results back from 4th biopsy in 20 years. I still am in stage 1 fibrosis. My doctor says I can wait 3 months and check my enzymes again. My hep c went from mildly active to moderately active and I will turn 50 in 5 months. He would like me to consider treatment any time but indicates that I can safely wait and see if enzymes increase. If they do, he will recommend treatment in 3 months. My Hepatologist is Dr. Hassanein, he is the dirctor of hepatology and liver transplantation at UCSD (University of California at San Diego). He said all of the supplements I'm taking probably are not doing much good. He suggests an herbal formula from Japan called Sho-Saiko-to (H09). He said this is the only formula other than peg therapy that has been shown to halt or reverse fibrosis, and lessen symtoms. He is directing a clinical study now at UCSD. Do you think it's OK for me to wait? Has anyone heard of this herbal formula?

Haven't heard of the herbal formula but health wise it doesn't sound like you are in too bad of shape. There are a lot of people around here that have waited until they felt the time was right.

Jeff, it's not a cure I don't think, but myself was on 2 herbs for liver enzymes, an Amish herboligist recomended them to at least to keep the immune system working right until tx begins, my doc says they may help some, he agreed

Hi-I'm new to the site. Jeff-just an opinion like everything else here-if fibrosis has begun, how can you not consider suppressing the virus asap? I would. My question this beautiful Florida evening: I've done peg/rib a couple years ago but the enzyme count has returned to 672k and a new gastro-doc wants me to do peg/rib again. He thinks it would really suppress the beast. I am a good "resoponder"-has anyone out there done this twice? Would appreciate your feedback. Thanks.

hi jeff and earl,
welcome to both of you! i am sure that you will soon be hearing from some folks that know a hell of a lot more than i do. however, here is my experience. a year ago i had my first biopsy. my liver was in pretty good shape and the doc suggested i put off treatment for now and return in one year and get my bloodwork done to see if i am still doing well. so, that is where i am at. i just had my blood drawn and an ultrasound and i will get the results on jan. 6th. and once again, i will have to make that decision. hope that all goes well for you guys. and yes, there are some doing their 3rd round of tx. i am sure you will soon hear from some of them. take care and happy holidays!

Hello Earl and Jeff,

I am one of the 10 to 20% of folks with chronic Hep C that ever need a transplant.
Most people die with Hep C,not from it.

Jeff, you seem to be progressing very slowly,but this is what happened to me.

I was diagnosed in 1997 already to advanced for a biopsy or tx.I had a transplant in 2001 after a miserable 4 years.

3 years post transplant,I had a biopsy and I was stage 3 fibrosis.I went on Pegasys/Copeg in May of this year and tolerated it very well.I responded at 12 weeks,but the day of my 26th shot I had a stroke.

I have never smoked and was an avid racquetball player,most of my life.
I am now 49 years old,and disabled.

I am a worst case scenerio,but tx is dangerous,so I think if I were you,I would be thankful your Hep C is progressing slowly.
If it aint broke,don't fix it.
Michael

Jeff,You sound like you're in pretty good shape right now. This is poison and they don't even know long term effects. Don't rush in unless it's necessary. But hell, I'm not a doctor.

Earl, WELCOME to this wonderful site. 627K sounds like your' viral load. Many multiple timers here. I was a total nonresponder 12? yrs ago. This time so far so good. Drugs are much better now.
PEACE, Mark
Good talkinta Dr Martino tonight. And good visiting with Dan.

Thank you all for your insights. Based on all your commentary, I'll put off treatment until I see that my enzymes are consistently increasing, I will then do treatment. It means that after 30 years of good luck with slow progression, the beast is getting stronger, taking advantage of my age (pushing 50) and the fact that I've had this 30 years. Michael, I'll pray for you. And Earl, welcome and thanks for the reminder to be ever-vigilant of this beast, to check its progression frequently. My doctor says that a person like myself can stay at stage 1 for 20 or 30 years and then suddenly the disease will progress logrithmically (go from stage 1 to stage 4 in in a couple of years, for example). For those who chose to delay treatment, be aware of this sudden progression.

Hey Now Jeff & Earl, welcome to this phine phamily
as I've been away for a while. after three biopsies in the last for 4 1/2 years and 26 weeks
on Pegasus/Copegus w/ 21 shots, I went from 21
million viral count down to 4k viral count, with
my enzyems in the 200's down to 29 & 37. I am very
happy with the results. I did'nt have the normal
side effects but had real bad trouble with blood
counts and playlets. My Doc told me that the Tx.
combo would have killed me through adverse blood
and playlet related conditions, long before the dragon would have. So I'm very happy and feeling
very good after being off Tx. for 7 weeks. I'm on
a very liver friendly diet,drink tons of water, feel better both physically and spiritually, than I did 5 years ago
I don't even see my Doc again for 6 mo. to a year.
everybody is different, but the main thing is to
PAY ATTENTION to your body and your Doctor. Prayers and good luck to all. SEA YA, Budley
and probably will have another biopsy
did

Ditto... Pay attention to your body and take care of yourself. I went 8 years before I started treatment. My biopsy stayed the same, but I started to feel like shit more and more often. I take Milk Thistle and Vit. no iron. I have been on treatment since 8/20. Read, research and then take stock of your options and how do YOU feel. If you feel great..... you never know, might be a cure around the corner. do you feel bad? might as well kick it before you get any older...This is something that only you can decide. One thing for sure... you got support here what ever you decide.

I ended up with Hep C somewhere in past 6 years. Enzymes are a little elevated, have fibrosis no cirhosis. But my decision is to start. I do not want to walk around and per chance infect someone.
I have been taking many vitamins and herbs but do not know if they have helped.I have not heard of the Alternative myslef but that is thanks to FDA or everyne here would know.
You must make your own choice. But I did show concern about the Scherling Peg treatment because of data and failures with MS, Leukemina, Hep and side affects. My doctor prefers using the Pegassys.
I think that is why I am willing to go thru Tx.
No one knows what could happen and bizarre things happen everyday. Enjoy your Holidays...my support group said this to me in October. I am baking, cooking, seeing friends, family. And January my orders to begin as grunt slayer in the pin cusion brigade begins.......
I wish all of you my love and prayers...

Thank you Michele,
I have been really thinking about what I have
heard about the Tx, and so far the only negative
thing about tx is the side-effects and about a
dozen positive things !! And the most positive
thing I like, is what michele just brought up about not effecting anyone else with this disease ! I would not even wish Hep-C on my worse
enemy !!
Anyway, everyone have a great Holiday and be
careful !!

Love,Peace and Hope to you all !!!!

Bruce

Hey Now Jeff,
All said...it's a personal choice we all have to weigh out for ourselves. Although herbal remedies may help with liver functions they'll not eliminate the virus. My decision to treatment is based on my liver damage, a bit more severe than yours.

Hi Earl,
Welcome to this great site. Good advice from everyone here. I'm on my third time around with treatments. I'm going to lick the dragon this time.

Thanks for the warm welcome. Should've qualified that I'm 51-[first show Buffalo '73]-and I feel fine-{notlike a "Stranger"-sorry I could'nt resist]. The 672k viral load-thanks Mark -is an increase from 450 six months ago. That makes me think I ought to treat as I have some family history of the Big C. We all know it ain't no fun, but I will confess the weight loss was a cool silver lining for me. Jeff- I'm thinkin you should treat soon,if possible. What happens to those not fortunate to have medical insurance? Well a wonderful holiday to all and Happy Birthday to the KING OF KINGS!

Jeff,
I haven't heard about H09, but I've heard my father's voice at christmas eve uttering something like that coming down the chimney with sweet gifts from phamily and phriends, as I was just a kid.
This guy from San Diego sounds like a serious master of medicine, so my advice would be to try out his herbal endorsements after having checked the possible side effects. If it can't harm you, go for it.
Best of luck in the times to come.

Man, I wish I had more time, to be able to carefully read all post and all threads, but at this point I'm skimming through alot, so I won't go an make any comments based on half-ass knowledge of what I've read of everyone's comments (LOL)!!

All, I will say is Merry X-Mas to All, and I hope everyone remains safe & as healthy as we can expect.

To Jeff & Earl....WELCOME!! Hope you'all stick around and become permanent fixtures here as far as becoming friends.....not keeping the virus of course!! This is a great group of Pholks with alot of love & caring for one another.
As Major Domo ( David), I have been priviledged to be here almost since the conception of this Philzone ( some 3 and 1/2 years now), and have found it to be a wonderful and valuable place for me to get support and make great friends that will last for life. Some of the pholks here I count as my best friends..... hands down!!! I have gone through 2 times on tx's and am still positive. I was a non-responder both times, but I am still an advocate of tx, if the timing is right, and you have the blessings of your Dr. ( get a couple of opinions please!!), and your loved ones & friends, etc. etc.
If the timing isn't right, and your at a very low stage......by all means wait a while if that's what your Dr. reccommends.

One thing is important to remember pholks...... most here are not Dr.'s, so your getting people's opinions ( however some are very good ones!!), so take it all for what it's worth ( loving advice)! Also, Dr.'s can be wrong....which is why I said get second ( and sometime 3rd opinions) whenever possible. Another words ....COVER YOUR ASS!! ( excuse the expression)

God Bless All......and have a wonderful Holiday Season!!!

Martin,
that was a good one.

Hey Major Domo-my very first shot a few years ago was a real freight train-a solid 3 hours of feelin beyond a "headlight", if you know what I mean.As I consider re-treatment, do you think things will be a bit milder? Appreciate your opinion.

Hey Now Earl,
i did my first treatments with interferon/ribavirin...the three shots a week stuff. As you; it kicked my ass all through the treatments. The second round was with Scherings Peg/Intron...it kicked my ass that time too.

This time around I'm doing the Roche Pegasys. double dosage(360 pg interferon-1200 mil ribas) 18 month regiman. As of now I'm at week 40.... PIECE OF CAKE!!!! I'm happy to report that I've suffered only mild side effects on their brand of pegylated poison. A reaccuring rash and some minor fatigue once in a while. I live quite an active schedule on top of it all....it does'nt seem to slow me down to awfully much. Maybe I'm just lucky this time around? I don't know. All I know is I'm testing NEGATIVE for any virus so far.
Music to my ears......

...which is why I said get second ( and sometime 3rd opinions) whenever possible...

I asked my doctor for a second opinion and he said "your ugly"....

Jim

Yo Domo-thanks for gettin back and glad you're doing so well. 18 months! Never heard of that one! I get burnt out on pullin' out that needle every Saturday, but NEGATIVE IS a beautiful thing!!!!!! C-ya Earl <><

Doing the 18 mo. double dosage gerrilla warfare attack on my dragon. My third go 'round at treatments....I got the stubborn geno 1a strain that don't die easy.

First time-nonresponder
2nd tx-relapser
3rd tx...so far so good. Currently testing UNDETECTABLE. Shot #40 tonight for me. Just an annoying weekly routine pinprick on this extended pegylated adventure.

So Senor Skullpipes...how about weight loss? Hair loss/thinning? Overall not lookin' too groovy? Bro- thats alot of Interferon-do you feel its affecting your other organs? Thanks Earl<><

Senor Earl,
Believe it or not, I've experienced only minor weight loss at the beginning of treatments. About 5 lbs. at most. Since then I've regained it back. No nausea whatsoever these tx. No adverse effects on my diet, I eat like a horse. Hair has thinned somewhat but I can afford it, I've quite a head full of thick hair to contend with anyway. Went to liver docs today. All bloodworks checking AOK. All my numbers are coming back in normal ranges.
It's not the interferon I worry about....it's the ribavirin that takes the body longer to clear. That's the shit that's poison.

Hey Now Jeff and Earl..WELCOME to one of the kindest places on earth....I'm getting reved up to start my 2nd round of TX. in Jan. This is one great bunch of Dragon Warriors and we have many vets here who have SLAYED their dragons...keep comming back..peace...mack

Mack, Gotta hand it to ya-gettin revved takes some doing. FYI-I've been told to re-treat as I've gone from undetectable after 1st round to a 672k viral load in a couple of years and my new gastro Doc. says this could be the real "slay" round. Just havin' a hard time wanting to do it since I feel great and have never been effected by the virus. I have medical insurance and the Doc is on standby to write the script. Just pokin' around here and appreciate everyone getting back to me! P.S. How about that new box set! Earl<><

Jeff and Earl,

I am patiently waiting to start the treatment,but
as I have been learning thanks to all these
wonderful Pfamily, that everything takes time,but
that the most important thing is to take the
actions you can, to start putting whatever you
can to fight and slay this Old Dragon !!!
But as sometimes time can be an advantage as well as as disadvantage !!!
Take care of yourselves in the meantime, and
never give up- We are all warriors of the same
cause !!!!!

LOVE, CARE, AND SUPPORT ALWAYS,


Bruce