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Is it safe to monitor your HepC, to put off tx?
I'm sure most people do this, I know I've been putting off tx for a long time myself. I had a biopsy in November of last year and I was a stage 1 grade 1, so I can still put it off for a short time but I don't think too long. I've gained a ton of weight and sometimes I fear that my belly is gonna fill up with ascites and I may become a$$ out when it comes to tx. Right now I have swelling in my hands and feet but I believe that to be partially due to other factors. My Gastro doctor is totally useless other than to get tests done. His opinion has always been not to tx. He says that my ALT, AST and all liver function tests have always been within normal ranges and I shouldn't rock the boat. Has anyone here personally gone from stage 1 to stage 3 or 4 in the matter of a very short time frame? Personally I don't have any friends who monitor their HepC so you're all I have. That said I have had many friends die but aell except on was still drinking. I do not drink. Anyone?
"At that time, there was no cirrhosis and no alcohol or drug involvement."
Meaning at the time of diagnosis.
Meaning at the time of diagnosis.
I'm new and this is my first time answering a question, but I do want to tell you my experience. I was diagnosed with hep C in '93, though I'd been feeling fatigued for no reason for 2 yrs. prior. I know I contracted HCV in '68 or '69. At that time, there was no cirrhosis and no alcohol or drug involvement. I tried interferon injections 3 x a week (the only treatment available at that time) very soon after diagnosis. My white count fell too low and I was taken off treatment. I went along being monitored with blood work every 6 mos. and an ultrasound once a year. My enzymes were about double normal during this time. At my ultrasound in 2005, I was found to have a HUGE hepatocellular carcinoma (HCC.) I knew there was the possibility that hep C could cause this, but never thought it would happen to me! The tumor took up the entire right lobe and had metastasized to the inferior vena cava. I was not eligible for either surgery or transplant. Shands said "sorry." I went to Mayo and they saved my life, with treatments to shrink the tumor (one a study drug) and excision of the rt. lobe. I did well for 4 yrs. and then at my 6-month MRI Mar. 31, '11, an HCC was found in the remaining left lobe. I was told I would need transplant, which I received 10/27/11. I'm still healing and my hep C is back with a vengeance. They are watching the numbers and I recently had a biopsy which showed my liver to be clear right now--no fibrosis. I'll have another bx in 3-4 mos.; meanwhile, they are watching my viral load and enzymes.
I tell you this because I don't want you to become fixated on the amount of fibrosis and not take into consideration the possibility of HCC developing.
One thing you can do is ask that an AFP (alpha fetoprotein) level be taken at your regular blood draws. My doc had stopped doing this, but once at Mayo they took it with every blood draw. It's a cancer marker.
Best of luck to you and I hope you won't have this experience, but want you to be aware of what CAN happen.
I tell you this because I don't want you to become fixated on the amount of fibrosis and not take into consideration the possibility of HCC developing.
One thing you can do is ask that an AFP (alpha fetoprotein) level be taken at your regular blood draws. My doc had stopped doing this, but once at Mayo they took it with every blood draw. It's a cancer marker.
Best of luck to you and I hope you won't have this experience, but want you to be aware of what CAN happen.
"Since I was diagnosed in late 2005 and began learning about hep C I think one thing is clear, it is not predictable."
Another thing I absolutely hate about this HepC!!!. I appreciate all the comments and I'll be finding a heptologist asap. cheers!
Another thing I absolutely hate about this HepC!!!. I appreciate all the comments and I'll be finding a heptologist asap. cheers!
OH: I agree, Hep C and the progression of fibrosis are completely unpredictable. From everything I've read and heard from my husband's doctors, there is no way to know how an individual's liver disease will progress. I was just trying to say in general there seems to be some indication that alcohol consumption, age, gender, weight, and length of infection may correlate to progression of fibrosis. The presence of diabetes and immune system problems may also correlate. I'm pretty sure that with all of the new research currently being done, genetic and biomarkers will soon provide some information as to how fibrosis progresses as well.
Advocate1955
Advocate1955
Advocate 1955
Although what you say makes sense I don't agree.
Since I was diagnosed in late 2005 and began learning about hep C I think one thing is clear, it is not predictable.
How it behaves in one person does not correlate to how it will behave in another.
Just because you have two people, around the same age, with the same genotype and similar habits means nothing to how the virus will progress, or not.
It's a crap shoot.
Fret: Get a really good hepatologist you trust and can work with.
This is the best advice I have for you.
Although what you say makes sense I don't agree.
Since I was diagnosed in late 2005 and began learning about hep C I think one thing is clear, it is not predictable.
How it behaves in one person does not correlate to how it will behave in another.
Just because you have two people, around the same age, with the same genotype and similar habits means nothing to how the virus will progress, or not.
It's a crap shoot.
Fret: Get a really good hepatologist you trust and can work with.
This is the best advice I have for you.
You mentioned that you were diagnosed in 1992. Do you have any idea as to how long you may have had Hep C? My husband was diagnosed in 2007, but has probably had Hep C for 35+ years. So, he was f1/f2 when he had been infected for about 30 years, but progressed to f4 when he had been infected for about 33 years (we think, of course we don't know for sure exactly how long he has had it). Length of time infected with the virus is another factor that may predict progression of fibrosis.
Advocate1955
Advocate1955
Age, sex, and length of time infected are probably the key factors in progression of fibrosis, when alcohol isn't involved.
Advocate1955
Advocate1955
Oy. You need to ditch your GI and see a Hepa. I did not realize our liver could progress rapidly like that. I took comfort in that I was Stage 1 and I could treat whenever I want since I am healthy. I see my GI a few times a year and have a biopsy every 2 years. I am not sure what causes the disease to progress like that, especially since you do not drink. Just as an aside and not to be nosy or bossy but could the other complications you mention be related to your weight gain? The swelling in your hands and feet sounds curious. I am only asking since if you decide to treat you want to be as healthy as you can going in and not start out with complications or lots of medicinal contraindications.
**Anyway, part of this kind of made me chuckle since I seriously thought I had ascites once as well and the situation could not have been more the opposite.
**Anyway, part of this kind of made me chuckle since I seriously thought I had ascites once as well and the situation could not have been more the opposite.
Your husband's situation sounds so similar to mine. December 2007 to JUne 2011 -- that was 42 months from an F1/2 to an F3/4 for me. When I consulted with the hepatologist last summer I still thought I had a choice. After reading the biopsy reports -- and the hepatologist's pathologist read them too - there was no choice. Treat now.
I do admit to drinking for about one year during that 42 month period.
WE are living proof that progression is not linear. I had foolishly thought, especially with low liever enzymes, that my system must have a handle on the inflammation and could keep it at bay. Wrong.
I am glad we are treating and will rid ourselves of this once and for all.
bean
I do admit to drinking for about one year during that 42 month period.
WE are living proof that progression is not linear. I had foolishly thought, especially with low liever enzymes, that my system must have a handle on the inflammation and could keep it at bay. Wrong.
I am glad we are treating and will rid ourselves of this once and for all.
bean
fretboard, yes, it was quite scary. No, my husband does not drink alcohol, does not do recreational drugs, and follows all doctor recommendations (no iron supplements, low fat diet, etc.) to help his liver.
As I said, my husband had a liver biopsy in 2007 right after Hep C diagnosis, and the pathologist reported between f1-f2, mild fibrosis, no bridging. He went through SOC in 2007, failed. He had a Gastroenterologist at the time, and she said there was nothing further she could do, as consensus interferon was not approved for daily use, so she told him to follow up with labs every 6 months and come back in 3 years for another liver biopsy. It's my impression that this was the correct protocol. Labs were all fine, no indication of significant progression of liver disease between 2007 and 2010. In 2010 we scheduled the liver biopsy that the gastro recommended and the results came back f4, bridging fibrosis, scarring, and nodes. Quite shocking and quite scary for exactly a three year period and to see that much progression. Consensus interferon was still not approved for daily use. The gastro referred us to the University of Washington Medical Center's hepatology department. We got in right away. The hepa called for the two pathology reports (actual slides/films) and had their pathologist read both at the UW. The pathologist concurred with the results. He didn't qualify for any clinical trials at that time. So, she began consensus interferon treatment (daily infergen injections and 1400 mg Riba) which became FDA approved right about that time (fall, 2010). Failed treatment.
No alcohol, no drugs, no medicine that hurts the liver, low fat diet (prior to Inc.), no increased risks...just time...(and g1a, age, gender, length of viral infection, and genetics working against him)...
I agree with HectorSF, my husband is probably the exception, not the rule...in terms of that much progress in liver damage in 3 years. The gastro was surprised and the hepa was surprised enough that she wanted her own pathologist to read both biopsies himself, but in the end all agreed that both reports were correct and he progressed from f1-2 to f-4 in exactly 3 years (36 months).
I don't think any mistakes were made in his treatments or his follow up monitoring after each treatment. So far as we can tell, the gastro followed the proper protocol, his liver damage just progressed more quickly than most at this stage in his battle with Hep C. I don't think the gastro missed any signs of significant progress in damage. She did the 6 month labs, he had no physical symptoms of significant damage, and she did the 3 year follow up biopsy. I'm not aware of anything else that should have or could have been done. He did all recommended treatments and didn't qualify for any trials, so even if we had known his damage was progressing more quickly than in the past, I can't think of anything additional he or his gastro would have or could have done during that time frame.
Advocate1955
As I said, my husband had a liver biopsy in 2007 right after Hep C diagnosis, and the pathologist reported between f1-f2, mild fibrosis, no bridging. He went through SOC in 2007, failed. He had a Gastroenterologist at the time, and she said there was nothing further she could do, as consensus interferon was not approved for daily use, so she told him to follow up with labs every 6 months and come back in 3 years for another liver biopsy. It's my impression that this was the correct protocol. Labs were all fine, no indication of significant progression of liver disease between 2007 and 2010. In 2010 we scheduled the liver biopsy that the gastro recommended and the results came back f4, bridging fibrosis, scarring, and nodes. Quite shocking and quite scary for exactly a three year period and to see that much progression. Consensus interferon was still not approved for daily use. The gastro referred us to the University of Washington Medical Center's hepatology department. We got in right away. The hepa called for the two pathology reports (actual slides/films) and had their pathologist read both at the UW. The pathologist concurred with the results. He didn't qualify for any clinical trials at that time. So, she began consensus interferon treatment (daily infergen injections and 1400 mg Riba) which became FDA approved right about that time (fall, 2010). Failed treatment.
No alcohol, no drugs, no medicine that hurts the liver, low fat diet (prior to Inc.), no increased risks...just time...(and g1a, age, gender, length of viral infection, and genetics working against him)...
I agree with HectorSF, my husband is probably the exception, not the rule...in terms of that much progress in liver damage in 3 years. The gastro was surprised and the hepa was surprised enough that she wanted her own pathologist to read both biopsies himself, but in the end all agreed that both reports were correct and he progressed from f1-2 to f-4 in exactly 3 years (36 months).
I don't think any mistakes were made in his treatments or his follow up monitoring after each treatment. So far as we can tell, the gastro followed the proper protocol, his liver damage just progressed more quickly than most at this stage in his battle with Hep C. I don't think the gastro missed any signs of significant progress in damage. She did the 6 month labs, he had no physical symptoms of significant damage, and she did the 3 year follow up biopsy. I'm not aware of anything else that should have or could have been done. He did all recommended treatments and didn't qualify for any trials, so even if we had known his damage was progressing more quickly than in the past, I can't think of anything additional he or his gastro would have or could have done during that time frame.
Advocate1955
I was in absolute shock last June when my biopsy read grade 3, stage 3&4. Also the addition of moderate steatosis. In 2007 after I relapsed the first time, my biopsy was grade 1, stage 1 to 2. No steatosis at all. And, by the way, my ALT and AST has always - always - been in the 20s and still is.
I could absolutely not believe my liver had gotten that bad in such a short time. You may may also have a steatosis issue if your weight has gone up a lot. I don't think you have to worry about ascites. The swelling in your hands and feet really does need to be checked out even though my guess is that is is not liver related.. You know it is hard on your heart to have all that belly weight.
Yes, fretboard, I have seen you sitting on that fence for a long time. I will tell you another thing -- this treatment I am doing now at age 64 with cirrhosis is terribly hard. My first treatment was at age 57 and I had very few side effects. I reallly do recommend treating when you are younger. Another thing -- with the addition of the PIs weight does not appear to be such a negative predictor that it was with SOC.
So, just my opinion, hop off that fence and join in on the fun
bean
I could absolutely not believe my liver had gotten that bad in such a short time. You may may also have a steatosis issue if your weight has gone up a lot. I don't think you have to worry about ascites. The swelling in your hands and feet really does need to be checked out even though my guess is that is is not liver related.. You know it is hard on your heart to have all that belly weight.
Yes, fretboard, I have seen you sitting on that fence for a long time. I will tell you another thing -- this treatment I am doing now at age 64 with cirrhosis is terribly hard. My first treatment was at age 57 and I had very few side effects. I reallly do recommend treating when you are younger. Another thing -- with the addition of the PIs weight does not appear to be such a negative predictor that it was with SOC.
So, just my opinion, hop off that fence and join in on the fun
bean
Fret,
I agree with OH on all her points.
Seeing an experienced and knowledgeable hepatologist will ensure that your disease is monitored properly. I would recommend a yearly checkup at CPMC or UCSF which would give you piece of mind and help you to monitor the status of your hepatitis C and liver disease while you wait for future treatments to come to market. Plus it is a good excuse to visit the Bay Area and enjoy one of the top vacation spots in the U.S. (!)
For a detailed paper on liver disease progression follow this link
http://www.hawaii.edu/hivandaids/Fibrosis%20And%20Disease%20Progression%20In%20Hepatitis%20C.pdf
Fibrosis and Disease Progression in Hepatitis C
…“Progression of fibrosis is more rapid in immunocompromised patients. Hepatic steatosis, obesity, and diabetes may also contribute to more rapid progression of fibrosis. There are no tests that reliably predict the rate of progression of fibrosis in an individual patient. High serum alanine aminotransferase (ALT) levels are associated with a higher risk of fibrosis progression, and worsening of fibrosis is uncommon in patients with persistently normal serum aminotransferase levels. Serum markers for fibrosis are not reliable and need to be improved and validated. Liver biopsy provides the most accurate information on the stage of fibrosis and grade of necroinflammation, both of which have prognostic significance. Repeating the liver biopsy, 3 to 5 years after an initial biopsy is the most accurate means of assessing the progression of fibrosis. (HEPATOLOGY 2002;36:S47-S56.)”
As OH said you do NOT have ascites. Only patients with advance cirrhosis (ESLD) develop ascites with is a complication of portal hypertension which only happens when the liver is so scared that blood flow through the liver greatly reduced.
You have so little liver damage it will be many, many years before you advanced to stage 3, which is with current treatment, the point where the liver disease impacts the cure rates. Of course with new treatments this may not be the cause. So as long as you don't damage out liver with alcohol or other toxic substances you have little to worry about. You are the perfect candidate for waiting for newer more effective with fewer side effects to come to market.
I am sorry the Advocate's husband developed cirrhosis while his hepatologist missed the signs of liver disease progression. I do not know the facts of the case so I really can't comment on any one person case as there always can be exceptions to the majority of patient’s experience.
Best-
Hector
I agree with OH on all her points.
Seeing an experienced and knowledgeable hepatologist will ensure that your disease is monitored properly. I would recommend a yearly checkup at CPMC or UCSF which would give you piece of mind and help you to monitor the status of your hepatitis C and liver disease while you wait for future treatments to come to market. Plus it is a good excuse to visit the Bay Area and enjoy one of the top vacation spots in the U.S. (!)
For a detailed paper on liver disease progression follow this link
http://www.hawaii.edu/hivandaids/Fibrosis%20And%20Disease%20Progression%20In%20Hepatitis%20C.pdf
Fibrosis and Disease Progression in Hepatitis C
…“Progression of fibrosis is more rapid in immunocompromised patients. Hepatic steatosis, obesity, and diabetes may also contribute to more rapid progression of fibrosis. There are no tests that reliably predict the rate of progression of fibrosis in an individual patient. High serum alanine aminotransferase (ALT) levels are associated with a higher risk of fibrosis progression, and worsening of fibrosis is uncommon in patients with persistently normal serum aminotransferase levels. Serum markers for fibrosis are not reliable and need to be improved and validated. Liver biopsy provides the most accurate information on the stage of fibrosis and grade of necroinflammation, both of which have prognostic significance. Repeating the liver biopsy, 3 to 5 years after an initial biopsy is the most accurate means of assessing the progression of fibrosis. (HEPATOLOGY 2002;36:S47-S56.)”
As OH said you do NOT have ascites. Only patients with advance cirrhosis (ESLD) develop ascites with is a complication of portal hypertension which only happens when the liver is so scared that blood flow through the liver greatly reduced.
You have so little liver damage it will be many, many years before you advanced to stage 3, which is with current treatment, the point where the liver disease impacts the cure rates. Of course with new treatments this may not be the cause. So as long as you don't damage out liver with alcohol or other toxic substances you have little to worry about. You are the perfect candidate for waiting for newer more effective with fewer side effects to come to market.
I am sorry the Advocate's husband developed cirrhosis while his hepatologist missed the signs of liver disease progression. I do not know the facts of the case so I really can't comment on any one person case as there always can be exceptions to the majority of patient’s experience.
Best-
Hector
Yes OH I will be getting a heptologist as soon as I go to my clinical trial site again. I think my appointment is sometime this month. I really can't drink to much coffee because of gerd, but I try.lol What has me really worried is I'm starting to have alot of stomach pain. Sure it could be from my gerd but it could also be that dang dragon getting ready to take me down.
"YES, my husband went from between f1-f2 to f4 in 3 years, per 2007 and 2010 liver biopsies"
That is scary, did your husband drink or anything or was it simply a progression of the HepC? In answer to your question I was diagnosed in 1992 and my age is 58. I tried tx once but I was having many issues with my job and the interferon. That interferon did a job on my mental health. At any rate I will get a real HepC doctor and see what he says. cheers
"YES, my husband went from between f1-f2 to f4 in 3 years, per 2007 and 2010 liver biopsies"
That is scary, did your husband drink or anything or was it simply a progression of the HepC? In answer to your question I was diagnosed in 1992 and my age is 58. I tried tx once but I was having many issues with my job and the interferon. That interferon did a job on my mental health. At any rate I will get a real HepC doctor and see what he says. cheers
i went up from 1 to 2 in three years...i don't think lots of bx are a good idea...but if your 1/1 i would wait a year because they're finding out so much so quick now...even if you do incivek tx it may seem like the same tx but it will most likely be dealt with differently.....have you taken gluten out of your diet for a few months to see if this could be an allergy..good luck....billy
Just to reiterate and speciifically answer your question: YES, my husband went from between f1-f2 to f4 in 3 years, per 2007 and 2010 liver biopsies both read by two pathologists who both agreed on the results of both biopsies.
Advocate1955
Advocate1955
Whether to wait or not depends on a lot of factors: age, general health, weight, stage of liver disease, how long you've had Hep C, genotype, etc. In my humble opinion, if you are an older male, heavy, and have had Hep C for awhile, it is better to treat sooner rather than later. It will be more difficult the older you get, the weight makes it harder for your liver to fight, and the longer you've had the virus the higher the chances that it will progress more quickly later in the disease. On the other hand, if you are younger and have not had Hep C for a long time (say 25+ years), then you may be able to wait and see. My husband doesn't have that option because of his age, how long he's had it, being Hispanic, and having Cirrhosis. My husband's hepatologist recommended treat when good options are available, and monitor every 6 months (labwork) and every year (ultrasound) in between treatments. Unfortunately, in his case, he progressed from f1-2 to f4 in 3 years. This isn't meant to scare you, just to let you know that usually progress isn't that fast in a 3 year period, but it happened to him. I guess it's a long winded way of saying that based on our experience, I would treat using triple tx now if I were you, rather than risk progression. That being said, however, watchful waiting with 6 month follow ups is reasonable to. I obviously am not a doctor, and I recommend that you make the decision with a doctor. If you're not sure you agree with your doctor's opinion not to treat right now, why not get a second opinion?
Advocate1955
Advocate1955
Although I can't quite answer your question I can tell you your belly will not swell up with ascites unless you have decompensated cirrhosis.
Have you thought of seeing a hepatologist? I know my guys from CPMC are out your way too. I love Dr. Frederick, he's young, smart, compassionate and on top of things.
One friend in Hawaii did tx, and relapsed in 2007. She swears by milk thistle and coffee. Her liver is in better shape than prior to tx.
Two things you can do to help slow down hcv progression is drink lots of coffee and take turmeric.
Here's some info:
http://www.aidsmeds.com/articles/hepatitis_coffee_liver_1667_19572.shtml
http://www.ncbi.nlm.nih.gov/pubmed/20026048
Have you thought of seeing a hepatologist? I know my guys from CPMC are out your way too. I love Dr. Frederick, he's young, smart, compassionate and on top of things.
One friend in Hawaii did tx, and relapsed in 2007. She swears by milk thistle and coffee. Her liver is in better shape than prior to tx.
Two things you can do to help slow down hcv progression is drink lots of coffee and take turmeric.
Here's some info:
http://www.aidsmeds.com/articles/hepatitis_coffee_liver_1667_19572.shtml
http://www.ncbi.nlm.nih.gov/pubmed/20026048
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