second round of teatment

[sadye's mom]

hi. i have been reading this site for a few weeks and find that most of you seem to know a great deal abt hep c and treatments/   i have a situation that i would appreciate any and all imput-- (1st of all i am sadye's mom's sister) she has been
letting use this/// SITUATION: i am 54 yr old female. i completed
hep c treatment in august -2003..tx was weekly injections of pegintron + 1000 mg rebotol..I DID NOT RESPOND TO TREATMENT--my a
lt isn ow 115 and rna is 1980000.    

i Had a liver biopsy after tx, which came back grade 3/ stage 4, early chirrhosis (biopsy is 2000 was grade2/stage1)

my doctor have me 4 options:

1.  same tx as before + daily amantadine
2. maintenance therapy; 1/3 of prev. dose
3. three times prev treatment 3x prev dose
4. do nothing and wait for a new treatmment

I am sure you can see my problem... just want your input. thank you soooo much...

princess515

[rravis1914]

I have been following your comments with interest. I have two friends w/ hep-c who failed on ifn & riba. It is good to have your opinion of Dr. Johnson/Lakeland. You mentioned a Zadaxin/placebo trial. Is it still enrolling? I am an investor in Zadaxin's Mfg., SCICLONE Pharmaceuticals for over 10 years. I found a lot of info from the Yahoo message board for SCLN. There are several very knowledgeable dr. and pharmacologists that post regularly. I do know that Zadaxin has been approved in 30 counties and can be purchased from Mexico/Panama with your Dr.Rx. (not covered by ins. until US approval next year.)
I wish you well and Godspeed in your treatments...rravis1914

[cuteus]

I am glad it was mentioned the infergen option.  If i would have known about it in March, i would have opted for consensus interferon + riba for the first few  months to achieve evr then go to pegasys.  
someone posted a link a while back by a guy who was tried many tx and is now trying this.  It seems to be promising according to some abstracts from the Boston meeting in Oct.
consensus tx is not readily available in the states, you really have to dig out a hepatologist that will go for it

gl to u
ivve

[Minttwist]

Thanks for thinking about me.  I'm doing okay....just busy with probate and estate taxes.  Oh! what's in probate isn't worth much at all; I just have to go through the process..besides this will be the money I use for closing cost on my refinance...POINTS

I'll pop in now and then and say hi!  

Glad you old timers are still doing well!

Val

[itsnotover]

Tess Marie - Yes I am seeing Dr. Johnson who is a definite godsend. He was recommended to me by the American Liver Foundation as being a Hep C specialist and he is!!!!  He is great and so is his wife Jan. He recommended to me the same tx you will be going on.  I opted for the Thymosin/Placebo & Pegasys Clinical Trial. If I get the placebo it will be like maint therapy for a year. After about seven bad doctors I finally feel in control and that someone is looking out for me. I have cirrhosis, am 57 and the bomb is ticking. My trial is at Mayo Clinic which is a trip from Kissimmee to Jacksonville.  There is another clinical trial starting in mid-Feb at Shands in Gainesville- pegylated infergen/riba (Dr.Johnson is meeting with Intermune next week about this). There is such a difference between a gastro & hep c specialist for us 1's.  Experience definitely makes the difference.

Sadye's Mom - I know this is very confusing going from doctor to doctor because I did. Yes each doctor has their own way of treating and it really depends upon how much experience they have with hep c. Some are cookie cutter doctors and offer little or no options. You do have options as stated above and this is great. At the beginning I changed four gastros - now I've seen the ONLY three hepatologists in the entire State of FL, along with a hep c specialist. Now I know I've covered all bases.  I would strongly suggest calling the American Liver Foundation (I would look it up for you but don't know where you are) - they will point you in the right direction.

Everyone be well and have a sx free weekend.

[sadye's mom]

thank you all for your opinions, tess marie looks like we have the same situation, doesnt matter how we got this horrible thing it is what to do about it... i was extrmely disappointed the first treatment i did not respond... i did have good alt#s etc thru entire treatment - then the biopsy, i am beside myself and i dont feel strong enough to go from dr to dr... i would appreciate me if you could tell me (if not - i understand) if after seeing several dr and specialist it all comes down to a test is a test and test shows what the problem is...i feel that not enough is know abt this and everyone and every dr has their own personal advise on how to treat this/  dont take me wrong but this is a big deal to handle...  please, anyone just staring out on treatment - stay with it...  down the line, it will be work it...  thanks again....and still- any and all advise is greatly appreciated.... this seem unreal to me...

[Eyedeas]

I relapsed also after showing a response all the way through the first time.  I'll be doing maintenence with Pegasys once a week, but will soon be starting at a full dose and staying there as long as possible.  No Riba though.

Kim

[itsnotover]

Hi Tess Marie ... I do believe we are both going to the same doctor in Lakeland.... he is great!!!!

[Tess Marie]

I too am a relapser. 1b, grade 3, stage 4,probable cirrhosis, age 60, and have carried this disease for 30 plus yrs.I completed 48 wks,( Aug. 22nd.) of peg-intron/Ribavarin and was a responder at one point. My gastroentologist felt that their was no other treatment at this time for me, which I refused to accept. At this point you need to find a therapy program which might work. You notice I say might, but I am extremely confident that I have chosen the correct form of treatment after researching extensively.I will be starting therapy again in May of 04. I would definitely recommend a 2nd. opinion and I pursued locating a Hepatitis Specialist. Their is alot to learn about this disease and I personally don't feel that Gastro's have the extensive knowledge that a Specialist would have. I realize that Hepatologists or Hepatitis C Specialists are few & far between, but when you are fighting for your life, it's worth the search.I also had to file an insurance appeal for this treatment and the Doctor, but the good news was I won!If I can be of any help, please forward comments and I can at least pass on my research info to you.Good luck and I will beat this disease, along with everyone else.

[Minttwist]

Most people try PEGASYS when PEGINTRON doesn't work.

[Tess Marie]

Itsnotover-are you seeing Dr. Johnson? Sadye's Mom-The Hepatitis C Specialist that I am starting treatment with is Dr. Johnson in Lakeland, Fl. He will not put a patient on Pegasys if they have been on Peg-intron and vice versa. He uses a combination of Infergen and Ribavarin. This is the same infergen which was federally approved in 1997, but at that time was not coupled with Ribavarin. Reports in documented medical studies now show that you have a 20% chance of eliminating disease with the infergen combo, vs. 10% on Pegasys-Peg-Intron.(for relapsers or non-responders.) The therapy is a sustained interferon, meaning that it stays in the system at a constant level, 1 shot per day, plus ribavarin.This way the interferon does not have a chance to relapse or lessen between shots. I have read many medical journals with the above statistics documented. He monitors closely for 3 mths. At this point if you have not cleared, this therapy ends and you can elect to go on a maintainence dose until something new surfaces. He also requires Cardiology stress tests and additional labs, ruling out any under lying problem. When I interviewed him & explained the terrible sides I experienced, his comment was that since we knew how it affected me before we would be prepared & there are preventative meds which we could be prepared to start if needed. My gastro let me go until I had to have 2 units of blood for the anemia. I feel positive about him and his successes. But, we all know that it affects each person differently, and through Gods grace and with the support of family & friends, we can perservere until a cure is found, but we must also look for alternative forms of treatment when you are at my stage or your daughters. Please keep me posted. I hope everyone who is on shot night has a mild night and a good week-end.

[Galen]

How you doing?  We don't see much of you these days and I know you have had an extremely tough year.  I hope you are doing better and finding peace.

[Oreos]

If you haven't already done so, get several other dr.'s opinions.  I had a similar situation (i'm on my second round of treatment) and before I decided to try again I saw 3 additional GI's and 2 thyroid specialists (I have thyroid probs which caused me to cease tx the first time).  What was interesting were the slighty varied opinions as to what I should do from each of the dr.'s.  You're doing the right thing - gather as much data as you can and make the best decision for you.

Good luck and bless you all.

Oh, there are also great research sites like the Oxford Journals Online - http://jac.oupjournals.org and the New England Journal of Medicine - http://nejm.org.  

[jonihs]

If it wasn't for your liver numbers, I would wait for something better, but w/ those numbers, grade and state, I would do number 3 and then look at other options as they come.  Best of luck! Joni

[mikesimon]

Reagarding amantadine:
From Jan 13

NEW YORK (Reuters Health) Jan 13 - The addition of amantadine to a regimen of interferon alfa-2b and ribavirin does not improve outcomes in patients with chronic hepatitis C viral (HCV) infection, researchers in the U.S. report.

Amantadine is an antiviral drug with activity against the flaviviridae family, but clinical trials of the agent used to treat HCV have yielded conflicting results. A sustained response is achieved in fewer than half of patients with HCV treated with interferon plus ribavirin, they note in their paper.

In fact, lead author Dr. P. J. Thuluvath and colleagues write in the January issue of Gut, "We believe that amantadine should be abandoned as a potential agent for the treatment of HCV."

In their prospective study, Dr. Thuluvath, at Johns Hopkins University in Baltimore, and his team treated 171 patients with interferon alfa-2b 3 million units s.c. three times a week and ribavirin 1000 to 1200 mg daily for 24 weeks, with treatment continuing for 48 weeks if HCV RNA clearance was noted by PCR after 24 weeks. Eighty-five were randomly assigned to co-treatment with amantadine hydrochloride 100 mg b.i.d. and 86 were assigned to placebo.

Adverse event profiles were similar in the two groups, and withdrawal rates did not differ significantly. After 48 weeks of treatment, HCV RNA clearance rates were 40.6% among 28 patients remaining in the amantadine group and 47.8% of 33 in the placebo group. At 72 weeks, only 21 patients in the amantadine group and 24 in the placebo group were available for evaluation; response rates were 30.4% and 34.8%, respectively.

"We assumed that our study had the power to show a moderate difference if it existed," the investigators write, "but we did not find even a trend favoring triple therapy."

Gut 2004;53:130-135.

When you say you didn't respond are you saying you didn't repond at all or that you responded and relapsed? If you didn't respond to the tx at all I would think that the right course may be maintenance therapy to halt any further liver deterioration. Otherwise you could always try an increased dose and/or frequency and see if you do respond. Whichever way you go I wish you luck. Mike

[westcoast]

I say number 3