Aa
Hello again - here's the bx info from local gastro
And it does not make me happy, but it is what it is. Sorry for the length of this.
1. I have cirrhosis - period, do doubt about it, dance all over the report and try to pretend I don't - but I do. Bridging fibrosis with all the other factors thrown in that are going on = CIRRHOSIS.
2. It is NOT early stage. I have serious liver damage. But it's not Stage 4. My liver isn't totally destroyed. I tried to pin him down on all that, but he said he'd just combine all of the info. and make it a Stage 3 since the report was rather garbled up in that regard (2+/3+).
3. After 40 years of harboring the virus and not doing tx'ing when I was diagnosed or soon after, this is no surprise to the doc. Actually, it's to be expected. The protocol now is, if diagnosed - treat - asap - no matter what the stage is. Treat. 10 or even 5 years ago it was "wait and see" if the numbers were low. Not anymore. I was under the old protocol the past 10 years when my tests (but only ONE biopsy) looked okay - when the protocol was to wait until the labs were literally screaming. Ah well.
4. At least I am still treatable
5. My age does not matter (he thinks) because I have no other issues, platelets are good although a bit low (142) but Procrit will handle that, I feel halfway decent, I appear to have good genes, I am slender (I only weighed in at 110 - but I'm 5 foot 3.5 and really small boned) I really do NOT seem my age in the way I act and think etc
6. I was testing him on "buzz words" - he caught 'em all - knows his stuff. Threw a few at me too - testing, testing, testing.
7. Told him that I had read that with compensated cirrhosis I had at best 62% SVR. He almost said BULLSHI!. lol. Told me to stop paying attention to numbers. That's the doctor's job. But for the record: I don't know why Ferritin wasn't checked - hmmm - but AFP was 15, down from 21; VL around 660,000 down from 770,000 eighteen months ago, but he said that doesn't matter anyway; it's now the baseline. That's what matters. Starting with tx, of course that's the number that's looked at.
8. He explained that although my liver is seriously damaged, it's a big organ and that I can function well even if 75% of it is forever destroyed. But tx CANNOT WAIT.
9. Probably too far gone to regenerate any of it but can at least slow the viral parade way down or maybe even bring it to a halt. If I take care of myself like stop eating junk food, drink water, etc., I still have quality time left even if tx fails.
10. Said yeah sure about seeing Gish Group. Said he'd be interested in their opinion (and he meant that in a good way). He knows who they are.
11. That said, he told me that tx is tx - I'm going to get the same thing no matter who's in charge of it. Just to keep that in mind. The new protocols are there - and situations are tweaked as they appear with each individual case.
12. My pdoc will handle any side effects meds needed - he knows what he's doing (of course they know each other).
13. Pdoc can always be paged - and he spends a lot of time in the ER in case I ever need to go there.
14. Re. the IL28B test - said - yes, it can predict, but it also might be wrong. Useless at this point - that's his opinion anyway.
15. Unfortunately for me, the new protocol (treat when diagnosed) was not in place until a year ago, but it is what it is.
I will go to Vegas on July 11 to see Gish's Group. I will see what their take is. Then I will decide whether to stay with Dr. Kahn or do the Gish trip, which would involve some trips up there, and I just hate even being in a car that long. 2 hours one way. Just how I am. I freak easily. Like Dr. Khan said, tx is tx. The rules are there, the rules are followed, and everyone in the biz. now is on the same page... or if not, they should be.
I have another appt. with Dr. Kahn on the 18th - when I will deliver my decision whether to stay local or go to Vegas. It probably seems that going with Gish is the way, but.. my husband and I are not getting any younger, and it really is a long haul up there and Vegas is INSANE - traffic is terrifying. I have more faith in my local gastro. after today, and my hub was with me and he has a sixth sense about people. He felt that the man was solid, real, good at what he does, and he cares.
Oh, last thing, I'm still alive.
1. I have cirrhosis - period, do doubt about it, dance all over the report and try to pretend I don't - but I do. Bridging fibrosis with all the other factors thrown in that are going on = CIRRHOSIS.
2. It is NOT early stage. I have serious liver damage. But it's not Stage 4. My liver isn't totally destroyed. I tried to pin him down on all that, but he said he'd just combine all of the info. and make it a Stage 3 since the report was rather garbled up in that regard (2+/3+).
3. After 40 years of harboring the virus and not doing tx'ing when I was diagnosed or soon after, this is no surprise to the doc. Actually, it's to be expected. The protocol now is, if diagnosed - treat - asap - no matter what the stage is. Treat. 10 or even 5 years ago it was "wait and see" if the numbers were low. Not anymore. I was under the old protocol the past 10 years when my tests (but only ONE biopsy) looked okay - when the protocol was to wait until the labs were literally screaming. Ah well.
4. At least I am still treatable
5. My age does not matter (he thinks) because I have no other issues, platelets are good although a bit low (142) but Procrit will handle that, I feel halfway decent, I appear to have good genes, I am slender (I only weighed in at 110 - but I'm 5 foot 3.5 and really small boned) I really do NOT seem my age in the way I act and think etc
6. I was testing him on "buzz words" - he caught 'em all - knows his stuff. Threw a few at me too - testing, testing, testing.
7. Told him that I had read that with compensated cirrhosis I had at best 62% SVR. He almost said BULLSHI!. lol. Told me to stop paying attention to numbers. That's the doctor's job. But for the record: I don't know why Ferritin wasn't checked - hmmm - but AFP was 15, down from 21; VL around 660,000 down from 770,000 eighteen months ago, but he said that doesn't matter anyway; it's now the baseline. That's what matters. Starting with tx, of course that's the number that's looked at.
8. He explained that although my liver is seriously damaged, it's a big organ and that I can function well even if 75% of it is forever destroyed. But tx CANNOT WAIT.
9. Probably too far gone to regenerate any of it but can at least slow the viral parade way down or maybe even bring it to a halt. If I take care of myself like stop eating junk food, drink water, etc., I still have quality time left even if tx fails.
10. Said yeah sure about seeing Gish Group. Said he'd be interested in their opinion (and he meant that in a good way). He knows who they are.
11. That said, he told me that tx is tx - I'm going to get the same thing no matter who's in charge of it. Just to keep that in mind. The new protocols are there - and situations are tweaked as they appear with each individual case.
12. My pdoc will handle any side effects meds needed - he knows what he's doing (of course they know each other).
13. Pdoc can always be paged - and he spends a lot of time in the ER in case I ever need to go there.
14. Re. the IL28B test - said - yes, it can predict, but it also might be wrong. Useless at this point - that's his opinion anyway.
15. Unfortunately for me, the new protocol (treat when diagnosed) was not in place until a year ago, but it is what it is.
I will go to Vegas on July 11 to see Gish's Group. I will see what their take is. Then I will decide whether to stay with Dr. Kahn or do the Gish trip, which would involve some trips up there, and I just hate even being in a car that long. 2 hours one way. Just how I am. I freak easily. Like Dr. Khan said, tx is tx. The rules are there, the rules are followed, and everyone in the biz. now is on the same page... or if not, they should be.
I have another appt. with Dr. Kahn on the 18th - when I will deliver my decision whether to stay local or go to Vegas. It probably seems that going with Gish is the way, but.. my husband and I are not getting any younger, and it really is a long haul up there and Vegas is INSANE - traffic is terrifying. I have more faith in my local gastro. after today, and my hub was with me and he has a sixth sense about people. He felt that the man was solid, real, good at what he does, and he cares.
Oh, last thing, I'm still alive.
The fibrosis score is also assigned a number from 0-4:
• 0 = no scarring
• 1 = minimal scarring
• 2 = scarring has occurred and extends outside
the areas in the liver that contains blood vessels
• 3=bridging fibrosis is spreading and
connecting to other areas that contain fibrosis
• 4=cirrhosis or advanced scarring of the liver
• 0 = no scarring
• 1 = minimal scarring
• 2 = scarring has occurred and extends outside
the areas in the liver that contains blood vessels
• 3=bridging fibrosis is spreading and
connecting to other areas that contain fibrosis
• 4=cirrhosis or advanced scarring of the liver
After having a very bad several months with my local GI and the case manger, and after they bungled several things, I finally switched to a Hepatoloiost in Minneapolis/St. Paul, which is an 80 mile drive one way. I saw him on June 4th and my faith is now restored in doctors. He was friendly, understanding, knowledgeable,compassionate, and he did a good exam and took a good history. He was reassuring and competent. And he was Real!
All I can say is that I wish I had switched sooner. I just did not know any better when I started, and my PCP was zero help. He knew nothing, LOL.
So I guess what I am saying is that a knowledgeable and competent doctor is worth his weight in gold. I know my treatment would have been a lot easier had my local docs known what they were doing and had they treated my side effects. You will be on treatment for several months. It pays to get a knowledgeable and competent doctor at the beginning of treatment.
Best of luck.
All I can say is that I wish I had switched sooner. I just did not know any better when I started, and my PCP was zero help. He knew nothing, LOL.
So I guess what I am saying is that a knowledgeable and competent doctor is worth his weight in gold. I know my treatment would have been a lot easier had my local docs known what they were doing and had they treated my side effects. You will be on treatment for several months. It pays to get a knowledgeable and competent doctor at the beginning of treatment.
Best of luck.
Point 1.
As can-do says... stage 3 is NOT cirrhosis. There is a huge difference between stage 3 and stage 4. The blood tests showing liver function - serum albumin, clotting factors and bilirubin and even sometimes liver enzymes are still within normal ranges. Indicating the liver is functioning normally. Scar tissue (septa) at stage three connects between liver cell but do not surround and cut off the the cells from the rest of the liver as happens when a person has cirrhosis.
On the other hand for patients with cirrhosis, stage 4 liver disease...
Many people with compensated cirrhosis experience few or no symptoms and can live for many years without serious complications. But the structure of the liver is altered: the usual smooth texture (think of the shiny nutmeg colored liver you see at the supermarket) of the liver starts to become nodular and lumpy. Nodules are areas of liver cells that have become cut off from the rest of the liver by circular bands of scarring with liver cells unsuccessfully trying to regenerate inside the bands. The free flow of blood throughout the liver starts to be compromised (portal hypertension). This can be seen with ultrasound, CT scan or MRI. The spleen becomes enlarged. Varices develop.
Obviously very different stages of liver disease...
4. Yes you are still treatable. As person with compensated cirrhosis are too. But you have a better chance of SVR because you have less liver damage than a person with cirrhosis.
Point 5.
You do not have a low platelet count like cirrrhotic do. Usually below 100,000. You have plenty of platelets to do treatment unlike if you had cirrhosis. So platelet count is of no concern to a person with stage 3 cirrhosis.
FYI: Procrit is used to raise for low hemoglobin levels (anemia). Not platelets.
Point 7.
AFP is of no importance in your case as only people with stage 4 cirrhosis have an increased risk of HCC.
VL changes all the time. But there is no essential difference between 660,000 down from 770,000. This are log numbers. The only significant change is a one of two log change. If 770,000 went to 77,000 that would be significant.
Point 8. Your liver is functioning normally. Yes, you have fibrosis but it isn't enough to prevent your healthy liver cells from functioning normally. People with stage 3 liver disease should treat their hepatitis C before there liver disease gets worse and impacts the chances of SRV.
Point 9. Your liver is still functioning normally and will heal itself when you get rid of the hep C. That is the purpose of treatment.
Point 14. IL28B test is irrelevant is most cases of hepatitis C. It doesn't change the statistics of SVR that much except in a few very particular cases of disease.
Dr. Gish will explain all of this to you and that all your concerns about cirrhosis is not something that is an issue for you. Treat your hepatitis while it is still relatively healthy and it will heal itself.
Cheers!
Hector
As can-do says... stage 3 is NOT cirrhosis. There is a huge difference between stage 3 and stage 4. The blood tests showing liver function - serum albumin, clotting factors and bilirubin and even sometimes liver enzymes are still within normal ranges. Indicating the liver is functioning normally. Scar tissue (septa) at stage three connects between liver cell but do not surround and cut off the the cells from the rest of the liver as happens when a person has cirrhosis.
On the other hand for patients with cirrhosis, stage 4 liver disease...
Many people with compensated cirrhosis experience few or no symptoms and can live for many years without serious complications. But the structure of the liver is altered: the usual smooth texture (think of the shiny nutmeg colored liver you see at the supermarket) of the liver starts to become nodular and lumpy. Nodules are areas of liver cells that have become cut off from the rest of the liver by circular bands of scarring with liver cells unsuccessfully trying to regenerate inside the bands. The free flow of blood throughout the liver starts to be compromised (portal hypertension). This can be seen with ultrasound, CT scan or MRI. The spleen becomes enlarged. Varices develop.
Obviously very different stages of liver disease...
4. Yes you are still treatable. As person with compensated cirrhosis are too. But you have a better chance of SVR because you have less liver damage than a person with cirrhosis.
Point 5.
You do not have a low platelet count like cirrrhotic do. Usually below 100,000. You have plenty of platelets to do treatment unlike if you had cirrhosis. So platelet count is of no concern to a person with stage 3 cirrhosis.
FYI: Procrit is used to raise for low hemoglobin levels (anemia). Not platelets.
Point 7.
AFP is of no importance in your case as only people with stage 4 cirrhosis have an increased risk of HCC.
VL changes all the time. But there is no essential difference between 660,000 down from 770,000. This are log numbers. The only significant change is a one of two log change. If 770,000 went to 77,000 that would be significant.
Point 8. Your liver is functioning normally. Yes, you have fibrosis but it isn't enough to prevent your healthy liver cells from functioning normally. People with stage 3 liver disease should treat their hepatitis C before there liver disease gets worse and impacts the chances of SRV.
Point 9. Your liver is still functioning normally and will heal itself when you get rid of the hep C. That is the purpose of treatment.
Point 14. IL28B test is irrelevant is most cases of hepatitis C. It doesn't change the statistics of SVR that much except in a few very particular cases of disease.
Dr. Gish will explain all of this to you and that all your concerns about cirrhosis is not something that is an issue for you. Treat your hepatitis while it is still relatively healthy and it will heal itself.
Cheers!
Hector
Hi Cat,
Fibrosis 4 is Cirrhosis, but it isn't the end of the world. People can and do live with Cirrhosis for many years and as long as their liver is compensated they can feel very well, live active lives, and treat Hep C when treatment options are available. I'm not really sure what you mean when you say Cirrhosis and 2+/3+, since f4 is Cirrhosis, unless you are referring to various grades within Cirrhosis. Remember, a biopsy is just a slice of the liver and the pathologist can only read what is on that particular slice, so it is only their best guestimate based on all of the pieces of information that they have. I'm not sure that there is really a clear cut demarcation between one stage and another, since there has to be a gradual bridging or transition from one stage before damage progresses to the next stage. Overall, my take away from your post is 1) treat now while your liver is still able to handle treatment, and 2) make the switch to a hepatologist. Cirrhotics should be seen by hepatologists. Don't worry about the past, it's in the past. Focus on the future. It's probably normal to be afraid or feel angry to get the diagnosis of Cirrhosis. I remember that my husband and I felt scared (and angry) to learn that he had progressed from f1/f2 to f4 Cirrhosis in 3 years between 2007 - 2010. It seemed impossible to believe because progression of fibrosis takes many years and he was being monitored every six months, etc., but it happened. Gradually the fear and anger turned into a passion for doing whatever needed to be done to get rid of Hep C and take care of his liver. Fear and anger can be paralyzing, so don't let them grip you. I'd love to endorse your hubby's sixth sense, but you need a good hepatologist. Just hop in your car and head to Vegas. See the Phantom of the Opera while you're there.
Advocate1955
Fibrosis 4 is Cirrhosis, but it isn't the end of the world. People can and do live with Cirrhosis for many years and as long as their liver is compensated they can feel very well, live active lives, and treat Hep C when treatment options are available. I'm not really sure what you mean when you say Cirrhosis and 2+/3+, since f4 is Cirrhosis, unless you are referring to various grades within Cirrhosis. Remember, a biopsy is just a slice of the liver and the pathologist can only read what is on that particular slice, so it is only their best guestimate based on all of the pieces of information that they have. I'm not sure that there is really a clear cut demarcation between one stage and another, since there has to be a gradual bridging or transition from one stage before damage progresses to the next stage. Overall, my take away from your post is 1) treat now while your liver is still able to handle treatment, and 2) make the switch to a hepatologist. Cirrhotics should be seen by hepatologists. Don't worry about the past, it's in the past. Focus on the future. It's probably normal to be afraid or feel angry to get the diagnosis of Cirrhosis. I remember that my husband and I felt scared (and angry) to learn that he had progressed from f1/f2 to f4 Cirrhosis in 3 years between 2007 - 2010. It seemed impossible to believe because progression of fibrosis takes many years and he was being monitored every six months, etc., but it happened. Gradually the fear and anger turned into a passion for doing whatever needed to be done to get rid of Hep C and take care of his liver. Fear and anger can be paralyzing, so don't let them grip you. I'd love to endorse your hubby's sixth sense, but you need a good hepatologist. Just hop in your car and head to Vegas. See the Phantom of the Opera while you're there.
Advocate1955
That's what doesn't make sense to me. The bx report says this...."Trichrome stain demonstrates periportal and bridging fibrosis (cirrrhosis)."
Then: "The submitted material demonstrates periportal and lobular chronic inflammation with moderate to severe piecemeal necrosis (2+/3+)"
I asked the GI - what STAGE AM I? His response actually now that I remember it was, "maybe 2" What?
I told him I did not understand the 2+/3+ part - well, obviously neither did he.
I asked him directly, "Do I have cirrhosis?" He said yes.
???????????
I asked him if it was early stage. He said NO.
So the whole thing is not adding up now that several hours have passed. There is no 4 on there.
What's your take?
Then: "The submitted material demonstrates periportal and lobular chronic inflammation with moderate to severe piecemeal necrosis (2+/3+)"
I asked the GI - what STAGE AM I? His response actually now that I remember it was, "maybe 2" What?
I told him I did not understand the 2+/3+ part - well, obviously neither did he.
I asked him directly, "Do I have cirrhosis?" He said yes.
???????????
I asked him if it was early stage. He said NO.
So the whole thing is not adding up now that several hours have passed. There is no 4 on there.
What's your take?
I see your "list" now and what is on my bx report still makes no sense. What are the two numbers I have on there? My last bx in 2002 spelled it out: Stage 1, Grade 0 (now those were the days, weren't they?). I thought I would get a definitive answer today but... I didn't.
So I see the rest of you are gettin' this like I am now. As in, HUH? What are those TWO numbers - what does each one represent? And if my GI couldn't really answer it definitively and came up with "maybe 2" I mean, jeez.
So I see the rest of you are gettin' this like I am now. As in, HUH? What are those TWO numbers - what does each one represent? And if my GI couldn't really answer it definitively and came up with "maybe 2" I mean, jeez.
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