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Stage one Hep. C - wait or treat
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Stage one Hep. C - wait or treat

I was happy to find this forum. Trying to read about Hep. C, and was lost since there are so much information. I was diagnosed with Hep. C genotype 1 in May 2007. The treatment supposed to take up to one year, and I decided to have healthy life, and don't take treatment. I didn't do biopsy. This year I did ultrasound showing my liver was good. Anyway  I went to a doctor who advise me to have a liver biopsy. Today I got result that I have fibrosis stage 1. I will be discussing with my doctor my options next week, but from her email I understand that she  reluctant to treat me.
From my reading I find out that there are more new medications coming next few years, with less side effects. And I am thinking it make sense to wait. At the same time I am getting older, in few days I will be 57, and may be will harder to treat.. Please help to make decision what to do?
ML
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In my opinion, your doctor does not want to treat you for the same reason my doctors through the years did not want to "treat" me.  The treatment is extremely harsh for, what is turning out to be, most people.  It is also good medical care under certain circumstances to take a watch and wait approach; assessing the patient periodically for indications that the liver disease has progressed and thereby requires the treatment despite its harshness.  

At this point in time it is probably excellent medical advice to encourage a patient to wait if their condition merits it and to continue to evaluate periodically.  If this is the doctor who referred you for biopsy as well as any other needed blood test, he or she is doing the right thing.  Not every problem requires immediate intervention but many problems, such as Hepatitis C do call for thorough assessment.  Once you have gone through a benign treatment at some point in the future, your liver will likely heal itself even from that degree of fibrosis.  Livers tend to do that.

I am not necessarily recommending that you do the same as I, however I wil invite you to read my journal blog in which I outline my involvement in a clinical trial with what it is hoped will become standard treatment in a few years.  At present there is no virus detectable in my blood.  I am continuing to treat because a viral "cure" is not declared for 6 months after the dosing stops.  This is called "sustained viral response" or SVR.  Nevertheless, my liver is even now repairing itself (I have maintained a fibrosis score of 0 to 1 all these years).

In my case, I had the infection for 40 years I believe.  I was diagnosed 20 years ago from biopsy.  Interferon was the only medication available at that time.  The doctor supported my wish to refrain from treatment.  Through the years, several moves to different locations brought different doctors who all dutifully periodically checked me with ultrasounds, blood tests etc.  When newer tests became available I would undergo further assessment.  As more knowledge of my condition became available to me, I became increasingly aware that I had made all the right choices.  If I had chosen to undertake treatment at an earlier point, I may have very likely compromised my career, experienced nasty side effects, given up my "treatment naive" status and have been no better off with a Hepatitis type unresponsive to interferon.  

Follow your intuition about this situation until the evidence is overwhelming that you really should treat immediately and continue to assess with your doctors encouragement, as needed.  If you have already determined not to treat now in any case, they may not give you more expensive tests right now but a genotyping is helpful as well as a Il28b pending the results of the genotyping for future reference.  

One more thing.  Try not to let your anxiety get the better of you.  This is a fearful business and anxiety is the HepC patient's worst enemy at times. It can propel people to take actions or refrain from actions that history proves are regrettable.  Best of luck to you.
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18 Comments Post a Comment
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Welcome to the forum, there's plenty to learn here so read around.  Why would your doctor be reluctant to tx you?  Do you have any arthritis issues or do you suffer from depression or other health issues?  What part of the world do you live in?  Basically the decision is gonna be yours on when you tx, but if you tell us more about you then people here can share ideas for you.  
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Avatar_f_tn
Is your doctor a gastroenterologist or a hepatologist?  If not, he/she may be reluctant to treat you because treating Hep C can be complicated as it is response guided treatment.  Or do you drink alcohol or use recreational drugs?  This would make a doctor reluctant to treat you as well.  F1 is a slight amount of fibrosis, so you don't have alot of damage, but the older you get the harder it is to treat you and get you to SVR.  If you are healthy, a hepatologist might recommend doing the new triple therapy now rather than waiting for the newer drugs that are down the road (because of your age).
Advocate1955
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I have Kaiser insurance, and it is hospital and insurance in one. I am in  Oregon. One of the reason they may not give me a treatment because a new treatment (with four drugs) is very expensive ( I am guessing it is around 80k),I was told that Kaiser here doesn't have a hepatologist, only GI. I never use any drugs and don't drink any alchohol and never had depression in my life. I don't have any health issue. I eat right, and exercise on regular basis.
I am confused what decision to make (it will still my decision, despite what doctor could suggest). Also, even when I complete my treatment  I may have some permanent health damages from side effect of drugs.
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Avatar_f_tn
In my opinion, your doctor does not want to treat you for the same reason my doctors through the years did not want to "treat" me.  The treatment is extremely harsh for, what is turning out to be, most people.  It is also good medical care under certain circumstances to take a watch and wait approach; assessing the patient periodically for indications that the liver disease has progressed and thereby requires the treatment despite its harshness.  

At this point in time it is probably excellent medical advice to encourage a patient to wait if their condition merits it and to continue to evaluate periodically.  If this is the doctor who referred you for biopsy as well as any other needed blood test, he or she is doing the right thing.  Not every problem requires immediate intervention but many problems, such as Hepatitis C do call for thorough assessment.  Once you have gone through a benign treatment at some point in the future, your liver will likely heal itself even from that degree of fibrosis.  Livers tend to do that.

I am not necessarily recommending that you do the same as I, however I wil invite you to read my journal blog in which I outline my involvement in a clinical trial with what it is hoped will become standard treatment in a few years.  At present there is no virus detectable in my blood.  I am continuing to treat because a viral "cure" is not declared for 6 months after the dosing stops.  This is called "sustained viral response" or SVR.  Nevertheless, my liver is even now repairing itself (I have maintained a fibrosis score of 0 to 1 all these years).

In my case, I had the infection for 40 years I believe.  I was diagnosed 20 years ago from biopsy.  Interferon was the only medication available at that time.  The doctor supported my wish to refrain from treatment.  Through the years, several moves to different locations brought different doctors who all dutifully periodically checked me with ultrasounds, blood tests etc.  When newer tests became available I would undergo further assessment.  As more knowledge of my condition became available to me, I became increasingly aware that I had made all the right choices.  If I had chosen to undertake treatment at an earlier point, I may have very likely compromised my career, experienced nasty side effects, given up my "treatment naive" status and have been no better off with a Hepatitis type unresponsive to interferon.  

Follow your intuition about this situation until the evidence is overwhelming that you really should treat immediately and continue to assess with your doctors encouragement, as needed.  If you have already determined not to treat now in any case, they may not give you more expensive tests right now but a genotyping is helpful as well as a Il28b pending the results of the genotyping for future reference.  

One more thing.  Try not to let your anxiety get the better of you.  This is a fearful business and anxiety is the HepC patient's worst enemy at times. It can propel people to take actions or refrain from actions that history proves are regrettable.  Best of luck to you.
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By the way, my only side effect from my treatment on the Hepatitis C trial with all oral drugs is a mild, periodic fatigue.  It doesn't stop me from my usual activities.  
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Avatar_m_tn
Hi Imilia... You doctor ordering a biopsy was a sound desicion ,in that knowing how much liver damage(fibrosis) there is is paramount to making desicions going forward.
Fortunately you have only minimal fibrosis,therefore you have more options.
On the one hand .treating now would give you approx. 70 -80% chance of success(very possibly for 24 weeks) and data shows that those with minimal damage may do somewhat better than those with more advanced fibrosis. Also you mention that you are 57 and it seems the younger and healthier we are in general,may also give you an added edge towards success.

On the other hand ,there are many new drugs currently being experimented with ,and some with excellent early result that may be on the market in the next few years(no-one knows exactly when) that may be even more efficient and possibly with fewer side effects.

When to treat is always a personal one that should be thoroughly discussed with a knowledgeable doctor in the treatment of HCV and what one person elects to do may not fit for the next...
Good luck with your desicion..
Will,

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408795_tn?1324939275
That's a very tough call.  I suggest if you decide to tx that you look for a clinical trial site in your area and bypass Kaiser altogether.  That would be the route that I would take.  A clinical trial site has a vested interest in making sure they do everything possible for your success.  That said, some trial arms are specific so you want to absorb as much information as you can.  Also, you may want to wait and just learn about HepC for 90 days or so and make a decision then.  good luck

http://clinicaltrials.gov/ct2/?ui=D006526&recruiting=true

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Avatar_f_tn
I don't know if you are in Beaverton or in Portland (or in some other city in Oregon), but my brother in law had Hep C, HCC, and later a successful liver transplant at Oregon Health & Science University in Portland.  I believe they partner with Kaiser.  Given that, I'm sure there must be a Hepatology/Transplant Center there.  I don't know if that is close to where you live.  We are in Seattle and husband is being treated by a hepatologist at the University of Washington Medical Center in their Medical Services/Transplant Center department, and his care has been excellent.  So far as I know, my brother-in-law's care at OHSU in Portland was excellent.  As others have said above, it is a very individual decision that you will need to make, whether to treat now because of your age, or treat later because your liver damage is mild.  My only recommendation is that you consider consulting with a hepatologist before you decide.  My husband progressed from F1-2 to beginning Cirrhosis between 2007 - 2010.  His first Hep C treatment was with a Gastroenterologist, and when he had to discontinue at Week 12 due to partial response, she said, come back and see me in 3 years, you have time to wait.  We came back in 3 years to learn that his fibrosis had progressed fairly fast in those 3 years to become Cirrhosis.  That is when we transferred to the care of a hepatologist at the UW and he is now in his third round of treatment due to partial response to first two.
Good luck with your decision.
Advocate1955
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Dear curiouslady1,

Thank you so much for your comments! Your information was very helpful. I never thought that the trial treatment would be a good option of treatment. I always was thinking that the treatment under trial is unknown, and probably could have unknown  side effects. But of course there are advantages to try something more advanced than excisting treatment.
I have a question for you: Where can I see your journal blog in which you outlined your involvement in a clinical trial?

Thank you again for your time and information!!
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Dear Willbb,

Thank you for taking time to share your ideas and knowledge with me. I agree that probably new drugs are coming to the market with less side effect, and I may wait to have a treatment.

Thanks again
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First you click on "people" at the top of the page.  Then you type in my name curiouslady1 in the block on the right.  Then you click on my name to get to my site.  Then you scroll down and you can see the posts and journals on the left.  It is the same for everybody and for you too!  Enjoy.
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Avatar_m_tn
All she has to do to go to your page is CLICK on YOUR NAME which appears above every one of your posts. I've never clicked on "people" at the top of the page. That's a real long way to get there.

Mike
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I didnt even know you could click on people I've always just clicked the persons name and voila like magic there is their profile page or whatever it's called.

Maybe I'm just lazy but it works for me ;)
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Well, you get more people when you click on people LOL.  But you are right, it is faster to click on the name.
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Thank you everybody for your valuable information!!! I truly appreciate your comments!!

Yesterday I visited my doctor (before we were corresponding through email) who said that my liver tests are stable, and she advised me to repeat biopsy test in 5 years. She directed me to my physician for observation with liver blood tests on annual basis.

She said that they don’t treat HCV stage 1, even stage 2 (I have HCV 1b, stage 1). They treat when stage 3 or more. The reason for that is  awful side effects from the interferon, and it  makes sense, with stage like mine,  to wait for a new treatments (without interferon) coming to the market next years.

I was relived. Reading of all people notes about the side effect of the treatment on Forum scared me.

Also I asked about possibility to take a trial of the treatment, and she didn’t advise me because in trial don’t use a medication, but substitute.
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Continue to be kind to your liver and NO ALCOHOL and good luck!!!

Chris
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Avatar_f_tn
Hi imilia,

I am 50 and was diagnosed last year.  I am geno 1b, stage 1 grade 2.  I am on week 16 of treatment, which included incivek for the first 12 weeks.  I am not encouraging you to treat but I thought I would share why I did in case it helps you sometime in the future.

I had been having a number of issues with my digestive system for years, internal itching plus late onset asthma and muscle and joint issues that prevented me from hiking which I loved.  I also started having problems with concentration and impatience.  Not all of these things happened at once and some came and went.

I went to a number of doctors and specialists Over the various digestive and breathing issues but nothing, just treat some symptoms.  I also occasionally complained to the doc about the joint and muscle issues but nothing, told I was getting older.  How do you go from hiking the grand canyon one day to not being able to get up the stairs. It felt more than normal aging but I pretty much decided this was just the way it was.

Getting really frustrated over a year ago with some of the lack of focus I was experiencing I started researching on the Internet.  I found a number of symptoms with eventual links to the liver health.  I tried a liver detox and started taking some supplements and felt quite a bit better.  Then a few months later I had my diagnosis and that shed a lot of light.

In researching I have even found references to late onset asthma possibly being associated to hep c and even found cases where the asthma went away as the patient started treatment and never came back when they reached svr.  Dont think this is common but boy would I love that to go away.

I may not feel better after treatment but I have hope and maybe I won't continue to get worse, this was a big factor I weighed in as I was obviously going downhill over the years and the quality of my life was being impacted.  With the new treatments, a very low viral load, being 1b, treatment naive, and only stage 1, it looked like I had a really good chance based on my research to reach svr in 6 months.

In addition, I felt I was strong enough now to treat.  My mother and grandmother both had breast cancer near my age.  My sister and cousin are having health issues. As we get older, more problems could arise that could impact treatment or your ability to handle it.

There are more drugs coming down the pike that should be easier.  I took the risk I thought was right for me.  Who knows if I gambled correctly. If you do not need to treat now then at least you are aware of the virus and can make sure your monitored.  Live well and be healthy.
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Avatar_f_tn
Imilia, not all trials have a "substitute", called a placebo, and because of what we now know about Hepc and helpful treatments, those people who get placed on the placebo have a chance to come back and treat with the drugs when the dosing trial is over.  However, your doctor, who is aware of your condition, indicates that you can wait and that sounds like a pretty good and sensible idea.  Best wishes for you.  
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