Aa
Whether treatment is necessary or not
My AST is double; my ALT is triple, and my viral load is 6 million - you think it's time for treatment. I'll have to take a year off from my job to do it. I feel like S---.
Well, here's some reasons to treat and not to treat that helped me decide...
To treat: I was stage 1, grade 1, treatment was going to be paid by workman's comp, and I would still have an income and a job waiting for me if I had to be off work the entire time...I was as healthy as I was going to get, and realized that could be a different story if I decided to wait "until something better" came along...I am Geno type 3a, which has an 80% chance of clearing the hep with treatment...I have a good support group, and a 9 year old daughter that I wanted to be able to enjoy still if I made it to 80 yrs old...I would only have to treat for 24 weeks...I was feeling the fatigue and had memory issues from the hep c already, and I'd only had it for 4 years...
Against: Chemotherapy (treatment) is a horrible thing to do to your body...It may have serious long lasting effects that you may have to cope with the rest of your remaining years..it may not work, not everyone clears the virus and some that do, relapse...It may bring any hidden health problem to the surface and in some people, it seems to accelerate the disease instead of killing it...(Many of these are already immune-suppressed, but not all)...I believe in giving the body tools to heal itself naturally...
That said, I opted for curtain # 1 after several months deliberation and preparing my body for battle...I succeeded in getting my viral load down to 16,000 prior to treatment, and had an early viral response at 4 weeks...I had the usual side effects of hemolytic anemia, itching and fatigue...I'm at the 16 week mark now, very little itching, still a bit of fatigue (when I push too hard) and the persisting anemia and low neutrophil count that prevents me from going back to work and being around seriously ill people...
Would I do it again? Depends on the circumstances then. Would I recommend it to others? If they had the same odds and biopsy numbers, yes...I've seen people die of hepatitis and liver failure and liver cancer...It's a horrible way to go, with little quality of life at the end. You feel horrible and sick for a very long time until a complication kills you or your liver just quits...I opted for the chance to halt the damage in it's tracks...and to possible have a better quality of life when I'm at the end of mine...~Melinda
To treat: I was stage 1, grade 1, treatment was going to be paid by workman's comp, and I would still have an income and a job waiting for me if I had to be off work the entire time...I was as healthy as I was going to get, and realized that could be a different story if I decided to wait "until something better" came along...I am Geno type 3a, which has an 80% chance of clearing the hep with treatment...I have a good support group, and a 9 year old daughter that I wanted to be able to enjoy still if I made it to 80 yrs old...I would only have to treat for 24 weeks...I was feeling the fatigue and had memory issues from the hep c already, and I'd only had it for 4 years...
Against: Chemotherapy (treatment) is a horrible thing to do to your body...It may have serious long lasting effects that you may have to cope with the rest of your remaining years..it may not work, not everyone clears the virus and some that do, relapse...It may bring any hidden health problem to the surface and in some people, it seems to accelerate the disease instead of killing it...(Many of these are already immune-suppressed, but not all)...I believe in giving the body tools to heal itself naturally...
That said, I opted for curtain # 1 after several months deliberation and preparing my body for battle...I succeeded in getting my viral load down to 16,000 prior to treatment, and had an early viral response at 4 weeks...I had the usual side effects of hemolytic anemia, itching and fatigue...I'm at the 16 week mark now, very little itching, still a bit of fatigue (when I push too hard) and the persisting anemia and low neutrophil count that prevents me from going back to work and being around seriously ill people...
Would I do it again? Depends on the circumstances then. Would I recommend it to others? If they had the same odds and biopsy numbers, yes...I've seen people die of hepatitis and liver failure and liver cancer...It's a horrible way to go, with little quality of life at the end. You feel horrible and sick for a very long time until a complication kills you or your liver just quits...I opted for the chance to halt the damage in it's tracks...and to possible have a better quality of life when I'm at the end of mine...~Melinda
Not so oldguy52,
It sounds to me like you are ready to TX. Given what you've said, I have to say that I would be in favor of treatment. I don't think your condition will get better without it. There may be some trials you could consider getting into as an option. There are probably better drugs for TX on the horizon, but I am not sure anyone can say yet how good or how soon they will be widely available.
Like theeagle says, it's a hard call. I would think that after 5 years, another biopsy might be in order to determine you liver's tru condition. On the other hand, it could show further disease progression which might make TX more complicated. I have always thought that more information is usually better than less. What does your doctor say?
I am 49 weeks into TX right now. I have 23 weeks to go. It has been necessary for me to work during this time. I am fortunate that my job does not require much in the way of manual labor, so I've been making it work. If I worked construction, landscaping, etc. I don't think I could do it. I can't tell you that it is easy, I wish I could. Everyone seems to react a little differently as far as side effects go on the SOC drugs.
Best of luck to you whatever course you take!
It sounds to me like you are ready to TX. Given what you've said, I have to say that I would be in favor of treatment. I don't think your condition will get better without it. There may be some trials you could consider getting into as an option. There are probably better drugs for TX on the horizon, but I am not sure anyone can say yet how good or how soon they will be widely available.
Like theeagle says, it's a hard call. I would think that after 5 years, another biopsy might be in order to determine you liver's tru condition. On the other hand, it could show further disease progression which might make TX more complicated. I have always thought that more information is usually better than less. What does your doctor say?
I am 49 weeks into TX right now. I have 23 weeks to go. It has been necessary for me to work during this time. I am fortunate that my job does not require much in the way of manual labor, so I've been making it work. If I worked construction, landscaping, etc. I don't think I could do it. I can't tell you that it is easy, I wish I could. Everyone seems to react a little differently as far as side effects go on the SOC drugs.
Best of luck to you whatever course you take!
I am glad things worked out well for you...but I believe they called that pleasant amnesia you speak of as "chemo fog" at Mayo - just another sx of tx... And others are right - viral loads get a lot of talk, but the viral load is not a direct indication of either level or damage. Just like fibrosis is not necessarily a linear progression.....makes everything a hard call....Do it sooner than later....
Stage 2 is the middle grey area where you can decide on how you are doing - but considering how you are saying you feel I can't imagine what you are waiting for honestly.
I had no symptoms whatsoever but the way you sound - how much worse could treatment make you feel? You might just feel BETTER once you start? You don't necessarily really need to take a year off of work. Many people don't find sides to be too difficult to manage doing treatment AND work. You might just be one of them.
I had horrific sides but needed to continue working for my job security. Believe me.......if I could do it anyone can. I'm a big baby.
Don't think you are the only chicken...we all felt that way before we started. But once you jump in you just realize you need to keep on keepin on and pretty soon the time is over and you are done. And thankfully there is some wonderful sort of amnesia that comes with it because I hardly remember my 72 weeks AT ALL. It's just like gone now.
You can do it. Just take one step at a time.
Go to the doctor and say I'm ready. That is step one.
Good luck!
I had no symptoms whatsoever but the way you sound - how much worse could treatment make you feel? You might just feel BETTER once you start? You don't necessarily really need to take a year off of work. Many people don't find sides to be too difficult to manage doing treatment AND work. You might just be one of them.
I had horrific sides but needed to continue working for my job security. Believe me.......if I could do it anyone can. I'm a big baby.
Don't think you are the only chicken...we all felt that way before we started. But once you jump in you just realize you need to keep on keepin on and pretty soon the time is over and you are done. And thankfully there is some wonderful sort of amnesia that comes with it because I hardly remember my 72 weeks AT ALL. It's just like gone now.
You can do it. Just take one step at a time.
Go to the doctor and say I'm ready. That is step one.
Good luck!
Melinda - I went for a biopsy about two years and at that time, it was stage two. I haven't had a drink in 15 yrs., my blood urea nitrogen is high, my bun creat is high and my gobulin is high. I'm just trying to get ready for the next step and...I'm chicken. Thank you.
oldguy52
oldguy52
I was wondering what your genotype is and did you have a liver biopsy done yet? The viral load only shows activity level of the hep and it varies widely...Unfortunately, it isn't a reliable predictor for treatment response...How is your health? Do you drink alcohol right now? Is your gall bladder in good shape? I'm guessing, if you have to take a year off, you are geno 1 a or b? The elevated enzymes indicate liver stress and/or active damage...Are the rest of your blood values normal?
I found that, prior to treatment, getting my liver as healthy as possible (lots of supplements, Japanese liver repair called SST, no alcohol, and getting my grumpy gall bladder out) and preparing mentally and financially, gave me the best odds of viral response and, hopefully a sustained response..My viral load was undetectable 4 weeks into treatment, but may not have been, had I been a geno 1 instead of a 3...Good luck..it isn't an easy decision to volunteer feeling like poo for a year...(((((((((((HUGZ)))))))))))) ~Melinda
I found that, prior to treatment, getting my liver as healthy as possible (lots of supplements, Japanese liver repair called SST, no alcohol, and getting my grumpy gall bladder out) and preparing mentally and financially, gave me the best odds of viral response and, hopefully a sustained response..My viral load was undetectable 4 weeks into treatment, but may not have been, had I been a geno 1 instead of a 3...Good luck..it isn't an easy decision to volunteer feeling like poo for a year...(((((((((((HUGZ)))))))))))) ~Melinda
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