To treat or not to treat

[wantalivlong]

Glad I found this forum.  I'm new here.

I found out last year, after being rejected for life insurance, that I have HCV.  I'm 49 years old and had a liver biopsy and blood work was done Sept. 2004.  My physical exam was described as pretty normal, genotype 1b, virus count 700,000, grade 1/ stage 1.  CBC has low white count (3600), mildly anemic (hemoglobin 13,600), biliruben described as upper limits of normal.  ALT also described as upper limits of normal.  

Not real clear on what all this means.  Doctor indicated he could treat but it seemed to me the odds of success was small.  Possible exposures could have been 25 years ago but more likely 40 years ago when I had a couple of blood transfusions.  Final recomendation was to have blood work every six months to a year and another biopsy in 10 years.

Questions I have is this, since it seems dormant for the time being, should I explore treatment options?   I recently had a colonoscopy and the gastroenterologist wants to discuss treating this on my follow-up visit.  What do you think I should do?

Thanks in advance.

[Califia]

Your stats show that the disease course thus far is very mild.  Your doctor's advice seems reasonable to me--I know that others on this list will radically disagree-- but I would definitely repeat blood tests on a six-month interval, and re-biopsy in three years, not ten.  (Every three to five years is the hepatology "gold standard," by the way.)    If you suddenly begin to experience an unexplainable increase in fatigue, or pain under your right rib cage (upper right quandrant, or URQ discomfort), or severe headaches,  or anything untoward,  have it checked out immediately.  Two great websites with basic info on HCV are janis7hepc.com and hepcchallenge.org.   Take care!

[rearfang]

I don't think hep c is ever really "dormant", though it sounds like you have minimal damage at this time. I know your odds of clearing the virus go down with age, so it may be worth considering treatment now. Also, you have a relatively low viral load, which makes your chances for clearing better also. It could begin to rise at any time, and the damage to your liver could suddenly begin to worsen. It is certainly a personal choice, but one that I did choose. Like you, I am a 1b, vl 650,000, but I am at stage 2/grade 3 (45 yo F),so I made the choice to give it a shot--pardon the pun. I have done 7 of the 48 shots, and so far it has been manageable. Welcome to the best place on the web for finding info, compassion, humor and advice.
Lauren

[cougareyes]

I agree with califia, if you live healthy, and don't do anything to contribute to accelerate liver damage you should be ok.Monitor your health regularly, looking back one of my first signs would have been frequent diarrhea; now its dailey. I'm 44 and had it since 1980, and I drank heavily. I'm grade 3, stage 3, with fatty liver, vl of 1.06 mil down from 3.5 mil in Oct, type 1a; I'm starting treatment in 2 weeks. A biopsy should be considered about every 3 years. Good Luck on your decision.

[RobBetz]

Lauren,

We seem to be in same boat...I am 25 years old....I got from a blood transfusion at birth...I am type 1b, VL of 178,000, biopsy showed 2/2..I took my first shot Friday night...does age and low VL really play a part in clearing....thx

robert

[Honey15637]

Want,,,,If me and this is just my opinion because upon finding out I had hep,,,,I always wanted it gone!  And I do agree with others as you will definitly be fine with miniumum damage and keeping close watch.  The reason though, that I would go ahead and treat is,,,,you are still below 50 or close around,,,better for SVR,,,,VL is low so that is very beatable and then hardly any damage,,,,You sound like you would be SVR upon treating,,,a prime candidate.  If you wait say,,,10 years because of other life things you need to accomplish,,,,Might be harder to beat then but on other hand,,,,you could get lucky and there may be another,,,,more side free treatment.  How lucky do you feel?  I would treat and be done with it.  Good Luck on whatever you decide as you have found a great place to come!

[jmjm530]

Your genotype (1B) puts you in a hard-to-treat group, but you still probably have close to a 40% chance of clearing the virus with today's combo treatment. Possibly even better if you treat agressively.

However, given these odds, and with only stage 1 fibrosis after all these years, there are many good arguments to wait for better treatments that are probably five years or less down the road.

Current treatments can be very rough for a lot of people (myself included) and some of the side effects could be permanent. So, if I were in your shoes,  my choice would be to wait on treatment.

Should you decide not to treat, you should have periodic bloodwork, and another biopsy in 3-5 years to make sure your fibrosis is not progresing.

[omyst]

Progression can be non-linear and waiting 10 years for another biopsy is definitely way too long.

I was diagnosed at 48 years old after having Hep C for 20 years, then my biopsy showed grade 1/ stage 0. My recent biopsy showed grade 3/ stage 2 (I'm now 55).

If you decide not to treat keep a close eye on things and maintain your general health. I would would want to do the blood work every 6 months and have a biopsy every 3 years.

[cuteus]

I'm glad you share that experience, people need to know that it might not be a slow moving disease in their case.

[Tallblonde]

If you decide not to treat, I would strongly encourage you to begin a protocol of vitamins and supplements (including herbs) that can offer some protection from liver damange. Everyone's regimen is a little different, but a commom denominator seems to be Milk Thistle, Alpha Lipoic Acid, and Selenium. I get all three in the proper dosages from a multi-supplement I purchase at www.vitacost.com. It's called "NSI Healthy Liver-Version 2." I also take:

Vitamin E (400 IU daily)
Fish Oil Capsules (2 grams daily in divided doses)
SAM-e (400 mg. daily -- totally alleviates my joint pain).


I also drink 4-6 cups of Celestial Seasonings White Tea and Rooibos Tea daily and take some other things for my brain fog and the numbness and tingling in my hands and feet. Additionally, I've recently started using Chinese herbs (a product called "Nu-Liver") as a way of getting more aggressive in keeping inflammation at bay. That's the key. Slow down the inflammation and you'll slow down the fibrosis.

I know this may sound like a daunting regimen, but it's important to understand that this virus ain't just sitting around being "dormant."  It's doing it's nasty thing 24/7. Not everyone has had the same kind of success I've had with supplements and herbs, but I will tell you that my VL has dropped 95% since I was dx nearly two years ago (genotype 1a; Stage 0-1; Grade 1-2) and my enzymes are less than half of what they originally were. I also think it's important to have your family doctor monitor your LFT's every 3-4 months, and to order a VL test every 6 months. On top of that, another biopsy in three years is a must.

Keep in mind that this regimen won't cure your HCV. But it may keep your viral load, enzymes, inflammation, and fibrosis down.

Good luck to you!
Susan

[scruffy]

As a person who has treated and relapsed I would go with Califia's recommendations. There will be some risks to both waiting to treat and treating immediately but having said that and having experienced tx I would choose to watch closely and wait given your level of damage. frank

[cuteus]

I was dx at 51, and knowing that age was a big factor in achieving SVR, I decided to treat while still relatively young and while my liver and my body were still quite healthy. The tx works in about 50 to 56 % of genotype one, not the best odds, but still pretty darn good given what cancer patients have to work with.  The key is to try and customize your tx to fit how the meds are working on the virus. the current standard of care is what is giving the% mentioned. going out of the standard might improve those considerably, b;ut we dont have all the numbers because private practitioners stats don't get counted at all.

[terriri]

Not knowing your personal life.... job, support ect. I will chance to say you should go ahead with trying to treat. Reason number one is you are not getting any younger. Reason two, you may not feel comfortable walking around feeling contagious. Reason three, what if in the future you are in a position where you have to change insurance, you could be turned down because of the hep c. And, reason number four, if you treat you have a good chance of clearing because of the low damage. From what I have read hepatitis can proceed rather rapidly when you get older. Your damage is light; therefore, your chances of clearing are better. I could be wrong, but my understanding is insurance companies will not turn you down after five years of remaining clear. Treatment is not always a walk in the park, however; my belief is that waiting is for the very young or the very very wealthy. Also, who is to say at this point that future treatments will not be without any side affects? Maybe your odds will be better with a possible new treatment but down the road, the side affects cause you to grow fur all over your body and turn into an ape.  I am really not trying to sound soooooooo ooooh you have to treat now because I did & cleared and life is wonderful. I really just want you to take it all in before you decide. I 'was' 1a!

[cuteus]

In a conversation with Dr. Cecil, he mentioned (to a late relapser in the group) that in his private practice, the late relapsers he has seen, had the common denominator of severe fibrosis and/or cirrhosis. If you are tolerating the tx fairly well, I would go beyond the standard also. good luck

[Tallblonde]

Any opinions about Dr. Cecil based on your encounters with him?  I think it says a lot about him that he was even at the event.  My first appointment with him is coming up in less than two weeks.  Looking forward to it.

Susan

[layla]

This is a very persosnal choice but since you asked my thoughts are that if you are close to fifty you should  tx. Time has shown for some reason after 50 the virus progresses faster than before. That said if you are comfortable not doing tx and can deal with it it is totally your choice to make. I would make sure to get biopsy as often as possbile. I do have a friend who had HCV for at least 30 years with no damage and then after 2 years was a 2 and this was at 50ish. If you chose to just keep watch make sure to watch very closely. I wish you the best. I personally could not stand being infected or infectious. It is different for everyone on how we can deal with this in our daily lives. LL

[Nimzovich]

Treat!  I am also genotype 1b and have had HCV for about 30 years. My first biopsy at age 44 was Stage 0/Grade 1. Given the minimal liver damage and low success rate + sx of 3x weekly interferon the gastroenterologist and I both thought waiting was OK, However, only six years later at age 50 my second bopsy is Stage 3/Grade 2-3 and I deeply regret not treating earlier. Also, there was a recent paper that showed a better success rate treating earlier rather than later.

Only recently did I start reading the medical literature. Loosely, what I gleaned was in many cases untreated HCV will progress to cirrhosis over a period of 20-50 years with 25-30 years a rough mean. Further, fibrosis progression is NOT linear (i.e., same amount of new liver damage each year), but can have sudden jumps as in my case and in fact this is not that unusual, particularly in males age 45-50.

If you decide not to treat a bx every three years as cougareyes suggests sounds like a good idea. An additional suggestion would be to immediately take the Fibrosure blood test to see how well it correlates with your bx and establish a baseline. Fibrosure is a blood test that estimates Stage/Grade by combining several blood measurements (not just liver enzymes) with some fancy statistical methods. Its probably not accurate enough to replace bx, but might be a useful addition to monitor every year.

I just started the standard Pegasys/Ribavarin treatment and so far have minor sx (fatigue, injection site rash, bloody noses) and am going to talk to my GI at my one-month visit about treating outside the standard dose to increase my odds of SVR the first time around. Good luck!

[audreywald]

I would wait. the tx did me great and it looks like permanent damage. I too am a gene type 1 and had only mild fibrosis and inflammation. I deeply regret the tx and the damage it left behind. I would only do it again if a great doc told me it was my ONLY way to live. Otherwise I would not go near it. It was hell for me and still is playing havoc with my body. Proceed cautiously. Really.

[LvdByGod]

hey, long time no see...how are you? i'm sorry you had such a hard time with tx audrey. i have a hard time too but it's my only chance to clear before i get the end stage liver disease which is much worse than tx by far and it can kill me...

i surely wish there was a way to fight this disease without the possible dangers of the current meds...i am so longing for this to happen so that someday we won't have to chose between worse and worser...

audrey, i hope you are ok...what sides of the meds are sticking with you? how long have you been of tx now?

it doesn't sound like you cleared...this is so sad to hear...do any of the future possible meds in research sound like anything you'd try if found safe? do you see anything good out there for future hepc med possibilities?

well, i pray things will get better for you eventually and something will come along that you feel comfortable to try...you're in my thoughts and prayers audrey...take care...

hey come by more often...you are dearly missed here...

sandi

[cuteus]

after the March, slowing down at times to let the laggers catch up, we met up at the Health and Human Services building, the small group was scattered around waiting for the speeches to begin...I happened to be close to a group of three men, one in shorts, banlon and baseball cap. one in a green suit,  no tie, and the other in jeans and tshirt. The latter was talking about relapsing two yrs post tx, and claim to have mild damage, the PCR went to <50, scary to hear. The man in shorts was commenting on individuals (no names of course) he treats in his office and colonoscopies and such...I butted in with the question of fear of re infection with these invasive procedures and we engaged in conversation, at some point I asked ask if he was a GI or hepatologist and he stated a GI with experience in hep c. Later He  offered his card to the relapser and I asked for one also. Imagine my surprise when it read; Dr. Bennet Cecil! I remarked that I have heard many good things about him in the forum and he asked which one, he seemed to know about MH. He mentioned that in his practice out of 397 individuals that treated, the 3 late relapsers had severe fibrosis and cirrhosis. He believes in the "comparmentalization" theory.
He also used the word CURED when referring to SVR, many times over; he suggested I was cured after the 6 mo neg PCR. It felt good to hear it.
I walked away, but after a while I decided to go and thank him for taking the time to email me his thoughts and he seemed gratified that he is able to help.
He took time to be at that march, he was pulled away by people, one elderly lady in  a wheelchair among the few; I believe they were in an informal consult. He gave his time freely.
Susan, if he does not meet your needs as a patient and your criteria for a provider, he definetly will meet your criteria as a nice human being. I was impressed. He was considering attending the NYC March, I hope he does!

[wantalivlong]

WOW!!  I'm amazed at so many candid/honest responses so soon after my post.  Thank you so much for your feedback.  This is great!

So many good answers and things to ponder.  

Terriri - Excellent thoughts on the insurance side of this decision.  Like so many other factors, that is certainly one not to be overlooked.

So many variables from those of you who have been treated.  I have a lot to learn as far as possible side effects and the quality of life change while being treated.  Where are some good resources for finding this information?  

I don't have an appointment with my gastroenterologist until late August.  I think I'll make an appointment with my regular doctor to have a physical and blood work done so the gastroenterologist will have a complete history.

I'll certainly will be around this forum for some time.  I'll let you know what I decide once I learn more about my options.  

Thanks to all here and God Bless!

[Tallblonde]

I'm really encouraged to hear your comments about Dr. Cecil.  As I read what you wrote, I was trying to imagine my Dr. Doofus from the Cleveland Clinic being at this event.  No way.  Not in a million years.  I'm sure he was teeing off on some country club golf course instead.  

Dr. Cecil sounds like one of those rare doctors who really, really cares about his patients.  I'm very excited about becoming one of his patients (if he'll have me, given the fact that I'm not ready to treat yet).  

Thanks for the details about your encounter.

Susan

P.S.  BTW, my husband and I were in D.C. the weekend before last.  We just made a quick 2-day trip to see the World War II memorial and a few other sites.  Had I known about the HCV event, I would have made our plans for a week later.  Oh well.

[jaroman]

Cuteus, did you do the "standard" treatment only?
Has anyone(esp. geno 1's) gotten their insurance to cover non-standard doses?
How terrible would it be to increase the Pegasys dose and have to go back down at some point in the future?
Reading posts from late relapsers has me freaking out yet again...

[Honey15637]

I agree totally! I was just starting to feel a little comfortable and now with 6 month pcr approaching,,,getting ansy. Just reading the late relapsers and know there is a small percent that do and so someone has to be in that percent bracket but,,,,,I don't want it to be me,,,lol

[cuteus]

jaro- I did 72 wks because I did not clear the virus by wk 12, so I wanted to give it my best shot the first time around.

I am scared also, that guy gave me heebee jeebees, he claimed to have mild damage, but Dr Cecil had his doubts and suggested that he goes for a fibrosure, he does not use biopsies anymore.

But, what we must remember is that, in his words; at 6 mo negative PCR, he is most certain to call it a cure! Must be based in his personal experience of relapsers. Keep that in mind.
Each negative brings us closer, but we still worry up to the year mark. I know you worry more, Honey, because you did not have a bx, but maybe you could do the fibrosure test?
be well

[Honey15637]

You are right and I'm ever so thankful to make it to the first marker!  Many don't so I certaintly don't want to seem grateful. You are right in that,,,,The not knowing shape of liver and also if you remember,,,,I started with 8 mil viral load so that has some concern as someone stated that there dr seemed to think that was a reason for relapse.  On a positive note,,,I keep telling myself,,,with year after year of normal alt and of course knowing that lots with normal could have cirrosis.  But my thinking is if I had it all these years and having normal alt,,,by now,,,my liver would be a withered chip lol   So I'm praying its in good shape or at least good enough shape to get me another negatory! ha

[Nooma]

Just chiming in here.  I'm geno 1A, viral load 60 million.  55 years.  Have had the virus for about 30 years.  Diagnosed in December, 2004.  Grade 1, Stage 0.  Symptoms include itchy hands and feet, URQ pain (constant), fatigue (had to leave my  job of 15 years--now I know why I couldn't handle the stress but am still able to work and lucky to find a job in my field that doesn't stress me out), some brain fog, all fatty foods make me nauseous and sick.  Dr. Cecil's advice to me was to wait.  The shock of hearing my viral load was so high left me speechless.  I was ready for treatment because my prior viral load had been at around 900,000.  This has been a seesaw for me.  My thinking is to go ahead and try the treatment and if the sides are unbearable, I will quit.  Doing the HepB shots now and won't be done until December.  Want to wait for that to be done before going back and DEMANDING treatment.  I hate the fact that I am infectious and worry all the time about infecting my husband or having an accident and contaminating someone with my blood.  I'm a worry-wort, I know, but this disease does wear on a person.  Hope you are able to make a decision and be at peace with it.