genotype 1a stage 4 treatments

[mary1979r]

Boyfriend has hep c for 35+ years and is newly diagnosed. What are the results of others that have had treatment for 1a? Is it true the liver can get better? What permanent side effects can be caused by these treatments? Can they cause damage to other organs or cancer? Need to know-Cheers-Mary

[dd45888]

dd45888:
I am currently on the Interferon/Ribavirin (Pegasys/Copegasys) treatment.  My viral load is now 0 from 457,701 after just 3 months.  
Of course being a genotype 1a I will continue the treatment for 1 years which means I will finish at the end of next Sept 2010.  
This treatment is very hard and taking excellent care of yourself is key, eating right, getting the rest you need, having support systems, working with your dr, pharmacists and roche staff which has been a God send as I am on the Roche assistance program.  
I am almost finish with my 4th month this time as I did this in 1999 and we did not have the genotype test back then so I did the treatment for 6 months and of course I should have done it for a year.  I would add, this treatment is Chemo, the Interferon is a type of Chemo used on many other things such as multiple myeloma, melanomas, hairy cell leukemia etc..  It does make you feel like you have the flu at all times, with many other sides effects along with that.  I am an RN and don't really know how I got Hep C, only that millions of people do have it and the percentage of people who start this treatment 75 - 80 % won't finish, because it is so hard and millions of people won't even consider this treatment.  I do believe it is the only cure for Hep C as I only know a few people that have actually finished and some over 10 years ago and they are still negative.  So for those of you who are wondering, the Pegasys.com site is a wonderful place to get started.  

[Bill1954]

As candoman says, HCV treatment can affect healthy blood values such as red and white as well; rescue drugs like Procrit and Neupogen can be taken to boost the production of these so that full dose interferon can be continued.

Trial drugs aren’t typically available in trial form once they are released; the need for clinical trial is obviated by then. However, there are many drugs being studied for this disease right now; there shouldn’t be any lack of trials in the foreseeable future for Hep C.

All the HCV drugs were pricey years ago, and remain that way now; pegylated interferon has been available now for what, 15 years, and continues to be relatively expensive. I wouldn’t look for ‘cheap’ HCV drugs in the near future.

Most of the currently available drugs for HCV are available from the manufacturer’s to those that can’t afford them, if you live in the US. Here are some contact numbers to patient assistance programs if you’d like to investigate:

Pegassist (Roche Pegasys system): 1-877-734-2797

Commitment to Care (Schering- Plough PEG-Intron system): 1-800-521-7157

Again, a good idea is to review the site ‘Janis and Friends’ to get a good overview of this disease; once you understand what’s going on, it’ll be much easier to navigate.

Best—

Bill

[can-do-man]

should have added to this comment.......Just remember even at his early stage...... of being "cirrhotic" most of us has many years to go.

[can-do-man]

Hi and welcome to the forum, sounds like your bf just crossed over to being cirrhotic. I was dx by biospy as stage 4 grade 2 four years ago, still doing fine here. Make sure he gets a good hepatologist and fully understands tx.

I treated once and relapsed and now in a trial with one of the new PI's.

Rescue drugs are to help keep you on tx. I've been on procrit for low HGB due to the riba and trial drug. Interferon can cause your ANC to tank, not to up on that drug as i've been lucky never to need it.

Yea trials go on after the drugs are on the market, the one i'm in covers everything. If money or insurrance is a problem the drug companies will step in and cover the meds.

Just remember even at his early stage most of us has many years to go so while he needs to get a plan together a few months will not make a difference.

Best to both of you as he needs your support right now and from what i've read you seem to care a great deal. Keep your heads up and onward we go.

Cando

[mary1979r]

What are rescue drugs? Does this mean treatment stops and patients have to take certain drugs to maintain? He just had a biopsy. He is stage 4-1 from what I understand. I know 4-4 is the worst.
Do clinical trials go on after a new drug is introduced to the market for sale? I would assume so. How are people going to pay for this if they don't have insurance? What other Hep C drug came out expensive at first? I'm sure the price will go down if demand is high.

[Bill1954]

With stage 4 progression, it’s probably a good idea to treat sooner than later. Here’s the address for Janis and Friends site:

http://janis7hepc.com/

Click on ‘newly diagnosed’ near the top of the page, or open ‘other HCV information” in the right hand margin; be sure to bookmark for future reference.

Best to both of you—

Bill

[HCA]

With current treatment the success rate for 1a is about 45%.
For an older male with advanced liver disease,less!
In two years the new drugs will take that 45% upto 66-70%
The treatment is hard to endure and the drugs are not good for you.
They don't cause cancer.
The treatment is infinitely preferable to end stage liver disease.
You can't learn about Hepatitis C on a forum-you have to read and understand a lot of stuff.
Go to the 'Janis and Friends' Hepatitis C site and read a couple of pages a day.

[Bill1954]

Your boyfriend has company here; his plight is like many of us. It’s typical to be diagnosed after 30 + years; I probably had it since 1973 or so.

I am genotype 1a and underwent treatment with interferon/ribavirin; it took two treatment sessions, but I am now virus free. The term used is SVR; (Sustained Viral Response), and is defined by remaining virus free for 180 days after completion of medications. Once this is achieved, it is *very* unlikely that the virus will reestablish itself; so unlikely that many doctors used the term synonymously with cure.

The treatment can be challenging for some, and is similar to cancer chemo in terms of side effects. It is also fairly expensive; health insurance is an important factor if you live in the U.S. Options include becoming involved with clinical trials. Cost is generally around USD $60,000/year, and can increase significantly if rescue drugs are required.

There are new drugs currently in late phase clinical trial known as Protease Inhibitors; these will initially be used in conjunction with interferon/riba to form a three part cocktail, hopefully increasing the efficacy from around 45% to roughly 70% for treatment naïve patients. It might also reduce the exposure to the existing drugs by shortening treatment time from 11 months to 6 months (in some patient groups).

Does your boyfriend have recent biopsy results available?  These results can indicate how quickly treatment should be taken; with little damage, it might be worth postponing treatment for a bit to see if the new drugs will pan out. Right now, they are expected to be released to the public by mid 2011.

Good luck, and welcome to the discussion group

Bill