Finally got results from my liver doc on biosy questions

[Guest guest]

FROM DR KWO:

Rita, sorry for delay in getting back to you.

Please see responses to your questions below

(my e-mail to him w/answers)

Hi Dr Kwo,

Thank you for allowing me to e-mail you regarding my results. I have showed them

to the doctor I work for and he says is it doesn't sound good but he doesn't

understand it all.

Being on Interferon hasn't seemed to help much and the virus did not clear with

the interferon and Riba so I don't think I am going to clear the virus that is

causing damage to my liver. I know you mentioned another study with protease

inhibitor added and I might be a candidate. Would I still be a candidate being

diagnosed with cirrhosis?

DR ANSWER: Absolutely, in fact you will have highest priority for this study,

though it will depend somewhat on how much your virus decreased the first time

Ginny, can you pull Rita Payne¢s chart for me, specifically, her HCV RNA titers.

On your first treatment, you almost got rid of the virus, which suggests to me,

that retreatment with a protease inhibitor will have a good chance of curing

you (remember not a guarantee though)

My worry is being able to work again with the treatment. I almost didn't make it

the last time with working. The exhaustion was horrible. My patient load is much

heavier now and that concerns me. Quality is sometimes better than quantity.

Would it be worth it for me to consider if I end up not being able to work. Is

it worth it if I am going to be extremely sick for a year and not clear again. I

don't know. Your input would be helpful here. I am scared of treatment again.

DR ANSWER: Let me check your viral loads again, if they went down significantly,

you have a good chance (not a guarantee) of cure.

I know my blood work isn't too bad at this point but how often should this be

checked since I now have cirrhosis.

DR ANSWER: Every 3 montys)

I am concerned about it progressing faster due to the Hep C. I also know

cirrhosis has different degrees of severity and I am assuming mine is in the

first stages. What are the stages and how fast does it progress usually.

Especially if being attacked by the virus.

DR ANS: Yes, yours is in the first stage of cirrhosis and you can go 10 years

like this or longer.

This is what I found in a medical journal " If the underlying cause of cirrhosis

cannot be corrected or removed, scarring will continue. The liver will fail, and

the patient will probably die within five years " .

DR ANS: That is correct, once the liver fails or decompensates, your liver has

not yet decompensated.

I have also read about ammonia levels and wondered if this is checked routinely

or only if a person shows signs of elevation.

DR ANS: Usually do not check, if you are curious, we can.

I just would like to have it explained to me in layman terms so I can explain it

better to my family.

I would like to know what you feel is the prognosis for me. I know you can't say

I am going to die in 5 - 10 years but surely you have some idea with the Hep C

what the prognosis may be. How fast progression may be. I went from mild

inflammation to cirrhosis in 10 years or less.

DR ANS: You should be stable for 5-10 years, some weight loss will help some,

but progressive fatigue will be the toughest thing to deal with.

I am hopeful we can get you in a nn-responder trial.

Rita

Cope

July 25, 1979 - August 12, 2000

passenger single car accident

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[Guest guest]

Sounds

like you’re a good candidate for the trial.  It sounds very positive to

me, Rita.  You don’t need to worry about ammonia until your liver gets decompensated. 

As long as it’s compensated, it’s still clearing the toxins.

Finally got results from my liver doc on biosy questions

FROM DR KWO:

Rita, sorry for delay in getting back to you.

Please see responses to your questions below

(my e-mail to him w/answers)

Hi Dr Kwo,

Thank you for allowing me to e-mail you regarding my results. I have showed them

to the doctor I work for and he says is it doesn't sound good but he doesn't

understand it all.

Being on Interferon hasn't seemed to help much and the virus did not clear with

the interferon and Riba so I don't think I am going to clear the virus that is

causing damage to my liver. I know you mentioned another study with protease

inhibitor added and I might be a candidate. Would I still be a candidate being

diagnosed with cirrhosis?

DR ANSWER: Absolutely, in fact you will have highest priority for this study,

though it will depend somewhat on how much your virus decreased the first time

Ginny, can you pull Rita Payne¢s chart for me, specifically, her HCV RNA

titers. On your first treatment, you almost got rid of the virus, which

suggests to me, that retreatment with a protease inhibitor will have a good

chance of curing you (remember not a guarantee though)

My worry is being able to work again with the treatment. I almost didn't make

it the last time with working. The exhaustion was horrible. My patient load is

much heavier now and that concerns me. Quality is sometimes better than

quantity. Would it be worth it for me to consider if I end up not being able to

work. Is it worth it if I am going to be extremely sick for a year and not

clear again. I don't know. Your input would be helpful here. I am scared of

treatment again.

DR ANSWER: Let me check your viral loads again, if they went down

significantly, you have a good chance (not a guarantee) of cure.

I know my blood work isn't too bad at this point but how often should this be

checked since I now have cirrhosis.

DR ANSWER: Every 3 montys)

I am concerned about it progressing faster due to the Hep C. I also know

cirrhosis has different degrees of severity and I am assuming mine is in the

first stages. What are the stages and how fast does it progress usually.

Especially if being attacked by the virus.

DR ANS: Yes, yours is in the first stage of cirrhosis and you can go 10 years

like this or longer.

This is what I found in a medical journal " If the underlying cause of

cirrhosis cannot be corrected or removed, scarring will continue. The liver

will fail, and the patient will probably die within five years " .

DR ANS: That is correct, once the liver fails or decompensates, your liver has

not yet decompensated.

I have also read about ammonia levels and wondered if this is checked routinely

or only if a person shows signs of elevation.

DR ANS: Usually do not check, if you are curious, we can.

I just would like to have it explained to me in layman terms so I can explain

it better to my family.

I would like to know what you feel is the prognosis for me. I know you can't

say I am going to die in 5 - 10 years but surely you have some idea with the

Hep C what the prognosis may be. How fast progression may be. I went from mild

inflammation to cirrhosis in 10 years or less.

DR ANS: You should be stable for 5-10 years, some weight loss will help some,

but progressive fatigue will be the toughest thing to deal with.

I am hopeful we can get you in a nn-responder trial.

Rita

Cope

July 25, 1979 - August 12, 2000

passenger single car accident