Aa
What Questions to Ask
Hello Everyone, I need a little advise. my mom has Cirrhosis of the liver and it is now getting hard. She never feels good anymore, her whole body aches and she is swollen. She has an appiontment with here general doctor tomorrow, not her Hep doctor. Her general doctor is the one she always see's and he knows what's going on, but they never tell her anything.
My question is what should I ask him? I want to know how she's doing, what can be done, how far this has progressed. I also want to know what tx is. Would it help my mom.
If anyone has any advice please share it with me, I just want to know what can be done to ease all the pain she is in. Thank you
My question is what should I ask him? I want to know how she's doing, what can be done, how far this has progressed. I also want to know what tx is. Would it help my mom.
If anyone has any advice please share it with me, I just want to know what can be done to ease all the pain she is in. Thank you
Califia,
I don't know what you mean by offending me? I'm not offended with any one person in particular. I'm just very frustrated by people always coming out with these generalized comments. This is not particularly aimed at you. Everybody's case is different. I was very healthy until I started getting symptomatic with this disease. I hardly ever had to deal with doctors except for periodic things that cropped up. Then, I started getting more and more symptomatic and eventually found out about the Hep. I have not felt good again since years ago, before the symptoms started. I do not want to constantly be hearing from people, "oh, you'll probably be dying from something else". Considering that my heart is fine, I am not diabetic. I don't have high blood pressure. I am not obese. I don't really see, short of being in an accident or being murdered, what else I'd be dying off except this stupid disease or something related to this stupid disease. Of course, that's not to say that I couldn't stand up one day and drop dead of some unknown cause. But, it just gets old having people always say this same dumb saying about dying of something else and always trying to minimize the seriousness of unremitting Hep C. Like I said before. I'm having a really down day today. Maybe tomorrow, I'll be peppy and be seeing things all sunny and upbeat. Soooooo, I'm going to get off of here.
Susan
I don't know what you mean by offending me? I'm not offended with any one person in particular. I'm just very frustrated by people always coming out with these generalized comments. This is not particularly aimed at you. Everybody's case is different. I was very healthy until I started getting symptomatic with this disease. I hardly ever had to deal with doctors except for periodic things that cropped up. Then, I started getting more and more symptomatic and eventually found out about the Hep. I have not felt good again since years ago, before the symptoms started. I do not want to constantly be hearing from people, "oh, you'll probably be dying from something else". Considering that my heart is fine, I am not diabetic. I don't have high blood pressure. I am not obese. I don't really see, short of being in an accident or being murdered, what else I'd be dying off except this stupid disease or something related to this stupid disease. Of course, that's not to say that I couldn't stand up one day and drop dead of some unknown cause. But, it just gets old having people always say this same dumb saying about dying of something else and always trying to minimize the seriousness of unremitting Hep C. Like I said before. I'm having a really down day today. Maybe tomorrow, I'll be peppy and be seeing things all sunny and upbeat. Soooooo, I'm going to get off of here.
Susan
Just a quick p.s.: I've had six biopsies thus far and I can assure you that I, too, am very fed up with living with this disease, fibrosis progression or no.
I truly apologize if I pissed you off the other day. I mentioned my own lack of progression not to crow or brag but to reassure you that you were not living under a death sentence. Believe me, I understand your fear and anxiety very well. My own terror led me (given the absence of effective conventional tx back then) to explore alternative routes as I did not believe that I could just sit back and do nothing. Whether or not all my "holistic" therapies had anything to do with maintaining a steady state we'll never know. But I started out with a very aggressive virus which had already caused minor bridging fibrosis--somewhere between fibrosis stages 2 and 3-- by the time I was first diagnosed in 1990 at the age of 39. Conventional wisdom would expect further damage at the same or increasing rate. Instead, after an intense antioxidant and herbal protocol, all progression stopped and remain stopped. It seems that my situation back then is similar to yours now: at least for the present, there are no further mainstream treatment options to explore. But that does not mean that you've run out of solutions and that's all that I'm saying here. Living in a perpetual state of fear is indeed a living hell, Susan. Been there, done that, and I hate to see you in a similar place. What I'm telling you comes out of real care and concern, not a spirit of competitiveness. Please know that I wish you well.
Hi everybody. Sorry to cut in here with a different subject, but all the new posts were taken up.
Can anybody tell me about Fibrosure? How accurate is it? What are your experiences with it? I had never had one done before and my doctor just ordered one for me. I got the blood work done yesterday. I don't know if it will really tell us anything significant or not, but I was curious. I realize that you really couldn't be getting biopsies every year (or at least it's not recommended!) so, I suppose this could be a good supplementary tool to determine what's going on. Comments anyone?
Susan
Can anybody tell me about Fibrosure? How accurate is it? What are your experiences with it? I had never had one done before and my doctor just ordered one for me. I got the blood work done yesterday. I don't know if it will really tell us anything significant or not, but I was curious. I realize that you really couldn't be getting biopsies every year (or at least it's not recommended!) so, I suppose this could be a good supplementary tool to determine what's going on. Comments anyone?
Susan
Ina and Dr Cecil are firm believers in this test, but I think it is significant that some major medical insurance companies do not pay for it, they rather pay for a biopsy. Let us know the results!
http://janis7hepc.com/biopsies1.htm#prometheus
Susan, as I await my biopsy results (bx last Friday)I have been doing all the reading on the Janis7 site on biopsies and so on. The site I give here explains the Fibrosure technique. It has been used in Europe for two years (from when this article was written) but not too long stateside. I did not get the impression that it met the biopsy gold standard, but would be a good in-between gage. Perhaps someone will pop in with personal experience on Fibrosure. I have none.
friole
Susan, as I await my biopsy results (bx last Friday)I have been doing all the reading on the Janis7 site on biopsies and so on. The site I give here explains the Fibrosure technique. It has been used in Europe for two years (from when this article was written) but not too long stateside. I did not get the impression that it met the biopsy gold standard, but would be a good in-between gage. Perhaps someone will pop in with personal experience on Fibrosure. I have none.
friole
Please don't misunderstand...I wasn't meaning to imply that I would use this test INSTEAD of getting periodic biopsies, but as an in-between. It was supposed to be a little more thorough than just using LFT's and PCR's alone. I've had 3 biopsies and each one shows increasing fibrosis. Please don't write back telling me that you can have cirrhosis for 30+ years and blah, blah, blah. I'm sick of getting those posts back from people. Good for them if they can go that long without progressing, halluluah, hurrah, hurrah. The fact remains that not everybody is that fortunate. I, on the other hand, would prefer to keep from advancing to cirrhosis. Anyway, I hope that the Fibrosure turns out to be a useful test and isn't just a waste of money.
If you can tell....I'm having a bad day, so don't pay any attention to my negativity.
Susan
If you can tell....I'm having a bad day, so don't pay any attention to my negativity.
Susan
Dug a little deeper, and the test I was referring to being used in Europe with the Fibroscan is called "fibrotest". It sounds like the european version of the fibrosure test, but there could be some differences.
Two articles give slightly different takes on how effective these non-evasive tests are compared to liver biopsy. One shows a very good correlation, the other seems to indicate that the non-evasive tests are only accurate with very high or very low values.
http://www.clevelandclinicmeded.com/hcv/litreview4.htm (scroll down)
http://www.hcvadvocate.org/news/newsRev/2005/HJR-2.3.html#2
Two articles give slightly different takes on how effective these non-evasive tests are compared to liver biopsy. One shows a very good correlation, the other seems to indicate that the non-evasive tests are only accurate with very high or very low values.
http://www.clevelandclinicmeded.com/hcv/litreview4.htm (scroll down)
http://www.hcvadvocate.org/news/newsRev/2005/HJR-2.3.html#2
From what I've heard, the jury is still out on the fibrosure test but in terms of accuracy against the gold standard (biopsy) apparently it correlates better when combined with saomething called fibroscan. I think fibroscan is only available in europe, but maybe someone knows if they have it here. The fibroscan certainly sounds like a good tool to have.
Bill, in case you were thinking of checking your stage 3.5 (LOL in joke) against fibrosure, I believe the test results are only relevant if you are off treatment. My guess is the fibroscan test might give decent results during treatment. Anyone up for a fibroscan tour of Europe? LOL.
Bill, in case you were thinking of checking your stage 3.5 (LOL in joke) against fibrosure, I believe the test results are only relevant if you are off treatment. My guess is the fibroscan test might give decent results during treatment. Anyone up for a fibroscan tour of Europe? LOL.
Here are some things I saved from posters TnHepGuy and Willing:
- will you rx Neupogen and Procrit proactively (i.e. - before needing to reduce or skip dosage)?
- what happens if I am a slow responder (i.e. - you have a 2-log drop by week #12, but are not fully clear)? will I then be a candidate for extended tx?
- how often will I have PCR's done? how often will regular bloodwork be done?
- how will I receive these results (i.e. - phone call, in-person, snail mail, etc.)?
- who will be overseeing my day-to-day care during tx?
- how often will I be seeing the doctor, nurse practitoner, etc., during tx?
- who do I call in case of an emergency?
- and be sure to tell them you would like copies of every test result.
____________________
How will we address my pain/discomfort if I have any?
What will we do if treatment causes me to become anemic?
How have you dealt with reduced Quality of Life issues for people on treatment?
Can you help me if I have sleep problems caused by treatment?
discuss the possibility of thyroid problems and how it will be monitored.
____________________
Other things to do:
- call up your pharmacy and make sure that they can get Neupogen and Procrit in a very timely manner (i.e. - on short notice). If the time arises when you need one of these, some doctors will want to cut dosage right away - not even leaving a few days to get the meds. The more things you can have set up in advance, the less surprises along the way.
- call up your insurance companty and make sure that they will cover Neupogen and Procrit.
____________________________________________________________
willing
06/01/2005
C5 . that's a very nice list tn posted. You may also want to ask your Dr. about the sensitivity of the VL tests s/he relies on. At 12 and 24 wks you'll want to get the most sensitive tests available though many Drs still rely on the older tests in which any VL under 500 iu/ml is reported as "undetectable". If by 12 weeks you've had your 2-log drop and your VL comes in still detectable but under 500 you may want to think about extended tx - but you'll never know if your Dr relies on the less sensitive tests. Overall, "test early, test often" is a good attitude to hear from your Dr. The rate of drop in VL carries a lot of information about how well the meds are working for you and once the vl drops below what can be measured you're left in the dark.
______________________________________
Ask him about extended treatment (72 weeks) for geno 1
My advice for anyone going into treatment is be sure that you and your doctor are on the same page. This includes making certain that you will be prescribed Neupogen and Procrit pro-actively (i.e. -BEFORE you reach the point where dosage reduction is called for). Also, try and find out how flexible your doctor is about length of treatment (eg - if you don't clear the virus by week #12, will your treatment be extended?). And find out how frequently you will be tested for viral levels - the more early on in treatment, the better. ((at 4 wks is good)). And find out how frequently 'regular' blood work will be done. Ask how often you will be seeing your doctor in person. And find out who will be your contact during the course of your tx (eg - nurse, nurse practitioner, etc.) Find out who will be your emergency contact. Ask how and when you will be receiving your test results.
Your doctor and everyone in their office works for you. You have to be sure they are a correct fit for your needs before ever beginning tx. Stay on top of them the whole way. Never be afraid to ask questions or to be a pain-in-the-ass - perceived or otherwise. Your goal is to get rid of this virus for good and to have to treat only once. Doctors see many, many patients every week. You are but a blip on their radar and can easily get lost-in-the-sauce. Learn as much as you can about the things you need to know and always be a self-advocate."
Ask if he can prescribe Pegasus/Copegus (prefered because it has less side effects than Peg)
ask for blood test on my iron level - Serum Ferritin Level and Serum Iron Level
Ask him if he lowers dosage before prescribing procrit (not good -- I want to stay at full dose and get Procrit ASAP)
Ask him if he'll extend treatment (36 weeks needed once I'm clear) if necessary?
Find out how often you will be tested for viral levels - your first test should be at 4 wks. If he doesn't want to do it that soon, pressure him about it.
10) Find out how often 'regular' blood work will be done. Ask how often you will be seeing your doctor in person. Find out who will be your emergency contact.
11) Ask how and when you will be receiving your test results
- will you rx Neupogen and Procrit proactively (i.e. - before needing to reduce or skip dosage)?
- what happens if I am a slow responder (i.e. - you have a 2-log drop by week #12, but are not fully clear)? will I then be a candidate for extended tx?
- how often will I have PCR's done? how often will regular bloodwork be done?
- how will I receive these results (i.e. - phone call, in-person, snail mail, etc.)?
- who will be overseeing my day-to-day care during tx?
- how often will I be seeing the doctor, nurse practitoner, etc., during tx?
- who do I call in case of an emergency?
- and be sure to tell them you would like copies of every test result.
____________________
How will we address my pain/discomfort if I have any?
What will we do if treatment causes me to become anemic?
How have you dealt with reduced Quality of Life issues for people on treatment?
Can you help me if I have sleep problems caused by treatment?
discuss the possibility of thyroid problems and how it will be monitored.
____________________
Other things to do:
- call up your pharmacy and make sure that they can get Neupogen and Procrit in a very timely manner (i.e. - on short notice). If the time arises when you need one of these, some doctors will want to cut dosage right away - not even leaving a few days to get the meds. The more things you can have set up in advance, the less surprises along the way.
- call up your insurance companty and make sure that they will cover Neupogen and Procrit.
____________________________________________________________
willing
06/01/2005
C5 . that's a very nice list tn posted. You may also want to ask your Dr. about the sensitivity of the VL tests s/he relies on. At 12 and 24 wks you'll want to get the most sensitive tests available though many Drs still rely on the older tests in which any VL under 500 iu/ml is reported as "undetectable". If by 12 weeks you've had your 2-log drop and your VL comes in still detectable but under 500 you may want to think about extended tx - but you'll never know if your Dr relies on the less sensitive tests. Overall, "test early, test often" is a good attitude to hear from your Dr. The rate of drop in VL carries a lot of information about how well the meds are working for you and once the vl drops below what can be measured you're left in the dark.
______________________________________
Ask him about extended treatment (72 weeks) for geno 1
My advice for anyone going into treatment is be sure that you and your doctor are on the same page. This includes making certain that you will be prescribed Neupogen and Procrit pro-actively (i.e. -BEFORE you reach the point where dosage reduction is called for). Also, try and find out how flexible your doctor is about length of treatment (eg - if you don't clear the virus by week #12, will your treatment be extended?). And find out how frequently you will be tested for viral levels - the more early on in treatment, the better. ((at 4 wks is good)). And find out how frequently 'regular' blood work will be done. Ask how often you will be seeing your doctor in person. And find out who will be your contact during the course of your tx (eg - nurse, nurse practitioner, etc.) Find out who will be your emergency contact. Ask how and when you will be receiving your test results.
Your doctor and everyone in their office works for you. You have to be sure they are a correct fit for your needs before ever beginning tx. Stay on top of them the whole way. Never be afraid to ask questions or to be a pain-in-the-ass - perceived or otherwise. Your goal is to get rid of this virus for good and to have to treat only once. Doctors see many, many patients every week. You are but a blip on their radar and can easily get lost-in-the-sauce. Learn as much as you can about the things you need to know and always be a self-advocate."
Ask if he can prescribe Pegasus/Copegus (prefered because it has less side effects than Peg)
ask for blood test on my iron level - Serum Ferritin Level and Serum Iron Level
Ask him if he lowers dosage before prescribing procrit (not good -- I want to stay at full dose and get Procrit ASAP)
Ask him if he'll extend treatment (36 weeks needed once I'm clear) if necessary?
Find out how often you will be tested for viral levels - your first test should be at 4 wks. If he doesn't want to do it that soon, pressure him about it.
10) Find out how often 'regular' blood work will be done. Ask how often you will be seeing your doctor in person. Find out who will be your emergency contact.
11) Ask how and when you will be receiving your test results
Sorry about your mom but it's hard to give more than general advice since we still don't know a lot.
Starting with basics, you should inquire how they know your mom has cirrhosis. Did they do a biopsy and when? If they did, ask for a copy of the report.
Also, there are different stages of cirrhosis, A,B, and C. See if they staged her.
Also ask if her cirrhosis is compensated or uncompensated. If it's compensated, then re-treatment is a possiblity.
But whether she has compensated or uncompensated cirrhosis, it seems that a second opinion is in order from a heptologist. Preferable one who treats large populations of hepatitis c patients. This may be over the head of your basic GI. If you don't live near a heptologist who treats hep c patients, travel might make sense.
People with cirrhosis are being successfully treated all the time for hepatitis C. And studies show that the treatment, especially if successful, can slow down or even reverse the damage.
And if it turns out she can't be treated, she should certainly be evaluated at a liver transplant center.
As far as "how close is she to end stages"...sure you can ask the doctor, but take any answer with a grain of salt. These discussion groups are full of people who have been told by their docs to "get their wills in order" only to end up either beating the virus or at least slowing down its progression. Truth is, probably no one can give an exact answer so try and think positive in terms of treatment options not end stages.
Let us know how things work out.
Starting with basics, you should inquire how they know your mom has cirrhosis. Did they do a biopsy and when? If they did, ask for a copy of the report.
Also, there are different stages of cirrhosis, A,B, and C. See if they staged her.
Also ask if her cirrhosis is compensated or uncompensated. If it's compensated, then re-treatment is a possiblity.
But whether she has compensated or uncompensated cirrhosis, it seems that a second opinion is in order from a heptologist. Preferable one who treats large populations of hepatitis c patients. This may be over the head of your basic GI. If you don't live near a heptologist who treats hep c patients, travel might make sense.
People with cirrhosis are being successfully treated all the time for hepatitis C. And studies show that the treatment, especially if successful, can slow down or even reverse the damage.
And if it turns out she can't be treated, she should certainly be evaluated at a liver transplant center.
As far as "how close is she to end stages"...sure you can ask the doctor, but take any answer with a grain of salt. These discussion groups are full of people who have been told by their docs to "get their wills in order" only to end up either beating the virus or at least slowing down its progression. Truth is, probably no one can give an exact answer so try and think positive in terms of treatment options not end stages.
Let us know how things work out.
Yes she got it from HepC. She found out about all this about two years ago and was on inferon for a while, but her platelets got way too low. Now she doesn't take anything.
Lately she has been in more pain than ever before. She wasn't even this bad when she was on the inferon shot.
What should I know that I don't know? How close to the end stage is she? How do I ask the doctor that?
Lately she has been in more pain than ever before. She wasn't even this bad when she was on the inferon shot.
What should I know that I don't know? How close to the end stage is she? How do I ask the doctor that?
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