Aa
Stage 4 Grade 3 and wanted to know about supplements and such
I just got bx results and now am scared to take anything. What should I totally avoid (besides alcohol)? What is ok still to take? I'm scared to even take tylenol! If my foot doc gives me percocet for my foot pain, is that safe? Milk thistle? Vitamins? Even everyday foods? I am only 33 and found out I have hep c 2 months ago. Any help would be appreciated. Thanks!
I can't believe the approach and attitude of your dr!!
I go to the North Shore Long Island Jewish Health System. Dr Bernstein is a top hepatologist with publish work, they have treated people in their 70s and they have done well. GET A SECOND OPINION. And a biopsy if possible. A statement like "stages don't apply to you" make absolutely no sense!
Please see a different physician, you seem to have advanced liver damage, since varices are present, but you should be given the choice to aim for better health. You are still young enough!
I go to the North Shore Long Island Jewish Health System. Dr Bernstein is a top hepatologist with publish work, they have treated people in their 70s and they have done well. GET A SECOND OPINION. And a biopsy if possible. A statement like "stages don't apply to you" make absolutely no sense!
Please see a different physician, you seem to have advanced liver damage, since varices are present, but you should be given the choice to aim for better health. You are still young enough!
Here's the support group I couldn't remember. I'd post my story here first. Apparently, they're very knowledgeable and supportive in cirrhosis, transplants, etc. And please come back and let us know what you find out and how you're doing.
Here's the link:
http://forums.delphiforums.com/liverfailure/start
-- Jim
Here's the link:
http://forums.delphiforums.com/liverfailure/start
-- Jim
I didn't want to speculate based on your first post, but considering your recent post it appears that at least your doctors think your liver condition is too advanced to treat.
The only advice I can give you is to get another opinion if you can. And it should be from a heptologist (liver specialist a large city hospital that has a major transplant center. You'll often find that one place will give up on you, while another is willing to treat. In any event, it is unacceptable for your doctors to keep you in the dark unless that is your wish.
Can't really say whether or not your age/condition makes you a good treatment and/or transplant canidate -- but even if not, maybe there're some anti-fibrotic drugs in trial that may be able to reverse some of your liver damage. And keep in mind, there're some very exciting new and less toxic drugs, hopefully only a few years away, that may offer you some hope. And frankly, your average doctor knows very little about liver disease in general, not to mention the newer strides being made every day. Another reason to seek that second expert opinion.
Last thing...of course you're more than welcome to hang around here for support and to ask questions. But few of us here are transplant candidates so our knowledge in this area is limited.
If you go over to the Janis Web site and tell your story, you might get more help and/or they can refer you to another site that deals more with cirrhois,transplants and anti-fibrotics: http://tinyurl.com/8eqdd
All the best and don't give up hope. Just get rid of the doctor who doesn't offer you any.
-- Jim
The only advice I can give you is to get another opinion if you can. And it should be from a heptologist (liver specialist a large city hospital that has a major transplant center. You'll often find that one place will give up on you, while another is willing to treat. In any event, it is unacceptable for your doctors to keep you in the dark unless that is your wish.
Can't really say whether or not your age/condition makes you a good treatment and/or transplant canidate -- but even if not, maybe there're some anti-fibrotic drugs in trial that may be able to reverse some of your liver damage. And keep in mind, there're some very exciting new and less toxic drugs, hopefully only a few years away, that may offer you some hope. And frankly, your average doctor knows very little about liver disease in general, not to mention the newer strides being made every day. Another reason to seek that second expert opinion.
Last thing...of course you're more than welcome to hang around here for support and to ask questions. But few of us here are transplant candidates so our knowledge in this area is limited.
If you go over to the Janis Web site and tell your story, you might get more help and/or they can refer you to another site that deals more with cirrhois,transplants and anti-fibrotics: http://tinyurl.com/8eqdd
All the best and don't give up hope. Just get rid of the doctor who doesn't offer you any.
-- Jim
Thank you for your reply to my confusion. I failed to tell you my age, it is 72. I have come to wonder if the specialist I go to at the VA medical center, and my personal physician have taken the attitude that my condition has reached the hopeless stage, and just don't seem to want to explain it as it relates to my age. They both ruled out the possibility of any chance of a liver transplant, and I can understand that, but I feel that there is more they could be telling me to help me better understand my future prognosis.
I do appreciate your input and realize you are not a Doctor, but your knowledge is very interesting.
I do appreciate your input and realize you are not a Doctor, but your knowledge is very interesting.
If you don't know, a few other questions for your doctor or nurse:
1. What is my genotype?
2. What is my current viral load?
3. What is my ALT ?
4. What is my AST ?
5. What is my Platelet count?
6. What is my INR?
These are all simple blood tests you should already have been given.
-- Jim
1. What is my genotype?
2. What is my current viral load?
3. What is my ALT ?
4. What is my AST ?
5. What is my Platelet count?
6. What is my INR?
These are all simple blood tests you should already have been given.
-- Jim
Thank for stopping by and sorry you're not feeling well.
First of all, none of us are doctors here so our knowledge is limited.
It's difficult to give advice in your case because your doctor is giving you incomplete information.
Some of these questions may be redundant but I would want to know from the doctor: (1) what is my diagnosis; 2) Why exactly do the stages 1,2,3,4 not apply in my case; and (3) What is the treatment plan; (4) Why can't I undergo general anathesia; (5) how badly damaged is my liver; (6) What is the future prognosis.
Also, if I understand your story correctly you only had one biopsy in 1968? Biopsies generally are repeated every 5 years.
Please let us know what you find out and maybe we can then be of more help. If all you get is more vague answers, I would definitely see another liver specialist. You can usually find them at large city teaching hospitals, preferably those with transplant centers. They tend to have the most comprehensive facilities.
-- Jim
First of all, none of us are doctors here so our knowledge is limited.
It's difficult to give advice in your case because your doctor is giving you incomplete information.
Some of these questions may be redundant but I would want to know from the doctor: (1) what is my diagnosis; 2) Why exactly do the stages 1,2,3,4 not apply in my case; and (3) What is the treatment plan; (4) Why can't I undergo general anathesia; (5) how badly damaged is my liver; (6) What is the future prognosis.
Also, if I understand your story correctly you only had one biopsy in 1968? Biopsies generally are repeated every 5 years.
Please let us know what you find out and maybe we can then be of more help. If all you get is more vague answers, I would definitely see another liver specialist. You can usually find them at large city teaching hospitals, preferably those with transplant centers. They tend to have the most comprehensive facilities.
-- Jim
I was diagnosed with Hep C back in the early 1990s. In the opinion of the Liver Specialist at that time, he blamed it's onset with a blood transfusion I received following a auto collision in 1968, back when blood was not screened as it is now. At that time he did a ultrasound follwed by a liver biopsy which revield scaring. The Hepatitis has not been a problem except for a couple of bacterial infections with high fever. With antibiotics they were checked.
Lately however,(the last 7-8 months), I have been experiencing abdominal pain and nausea. My present specialist has taken me off all medications, which included meds for HB Pressure. I have been retaining fluids in the stomach and feet area. He put on a 50MG diuretic, and an anti-nausea med. My BP is maintaining great levels, with out these meds that he stopped.
I have some days that are pretty good, and others not so good.
No appetite, and have lost about 20 lbs. during this stretch. I have had recent Colonoscopy which detected no Cancer, but some internal hemorrhoids, and no polyps. I also had an upper GI which uncovered the presence of Varies in my esophagus, although not too large yet. The specialist said that the stages 1-2-3-4 do not apply to my Hepatitis C condition.
He said that I could never under go major surgery with General anesthesia, as I most probably would not wake up from it. He said that in my present condition, I had basically 4 conditions to be aware of and do everything I could to prevent any of them. They are; Infections, Bleeding (and I do have an enlarged spleen), Fluid Retention, and Mental confusion.
I have rattled on here without getting to the question I am asking about. That is, I am developing an occasional HIC-CUP
and it is becomeing more frequent. It's rather harsh to the point that it causes real discomfort in my abdomine and throat. Not steady like the constant hic-cups we are familiar with, but come on individually many times a day, and getting to be worse as time passes. IS ANYONE FAMILIER WITH THIS PHENOMENON?
WOULD APPRECIATE INPUT. tHANKS FOR YOUR PATIENTS, and could you tell this is my first post to this forum?
Wrecksm
Lately however,(the last 7-8 months), I have been experiencing abdominal pain and nausea. My present specialist has taken me off all medications, which included meds for HB Pressure. I have been retaining fluids in the stomach and feet area. He put on a 50MG diuretic, and an anti-nausea med. My BP is maintaining great levels, with out these meds that he stopped.
I have some days that are pretty good, and others not so good.
No appetite, and have lost about 20 lbs. during this stretch. I have had recent Colonoscopy which detected no Cancer, but some internal hemorrhoids, and no polyps. I also had an upper GI which uncovered the presence of Varies in my esophagus, although not too large yet. The specialist said that the stages 1-2-3-4 do not apply to my Hepatitis C condition.
He said that I could never under go major surgery with General anesthesia, as I most probably would not wake up from it. He said that in my present condition, I had basically 4 conditions to be aware of and do everything I could to prevent any of them. They are; Infections, Bleeding (and I do have an enlarged spleen), Fluid Retention, and Mental confusion.
I have rattled on here without getting to the question I am asking about. That is, I am developing an occasional HIC-CUP
and it is becomeing more frequent. It's rather harsh to the point that it causes real discomfort in my abdomine and throat. Not steady like the constant hic-cups we are familiar with, but come on individually many times a day, and getting to be worse as time passes. IS ANYONE FAMILIER WITH THIS PHENOMENON?
WOULD APPRECIATE INPUT. tHANKS FOR YOUR PATIENTS, and could you tell this is my first post to this forum?
Wrecksm
No, I see Dr Zein @ the Cleveland Clinic. But what was your experiences with them altogether?
Hi Ina,
How was "vacation" ?
Because it was a private doctor-patient conversation, and not a published statement, I don't think it prudent to call the doctor out in a public forum. Nor, if you've so noticed, do I choose to
publically name any of the doctors I treat or consult with. Partly it's because of my own private nature and partly because I would then feel uncomfortable criticising my care which I do on occasion. This was presented clearly as an anecdotal conversation between me and a doctor/researcher I was consulting with. Please accept it in this context.
I should add that I don't think he's alone in this regard. I believe, and someone correct me if I'm wrong, that the esteemed Dr. Schiff told Snook_man something similar. There's really are a lot of very exciting stuff in trial right now and a lot of docs are very optimistic.
I was actually more suprised by his second statement -- that if I relapsed he would not recommend re-treatment with current drugs but to wait a few years until better drugs came out of trial. And he's talking to a stage 2-3. He wasn't even that concerned about re-biopsing me right away although I'm not sure if I agree there.
Does that mean there're any guarantees he's right. Of course not. But statements like this from leading researchers do offer hope and must be somehow computed in making tx decisions.
I'll ALSO add that 37 years ago, the leading heptologist of the day -- perhaps of all time -- Dr. Sheila Sherlock -- told me that my "chronic persistent hepatitis" would burn out in 4-7 years. So, yes, there're no guarantees. :)
-- Jim
How was "vacation" ?
Because it was a private doctor-patient conversation, and not a published statement, I don't think it prudent to call the doctor out in a public forum. Nor, if you've so noticed, do I choose to
publically name any of the doctors I treat or consult with. Partly it's because of my own private nature and partly because I would then feel uncomfortable criticising my care which I do on occasion. This was presented clearly as an anecdotal conversation between me and a doctor/researcher I was consulting with. Please accept it in this context.
I should add that I don't think he's alone in this regard. I believe, and someone correct me if I'm wrong, that the esteemed Dr. Schiff told Snook_man something similar. There's really are a lot of very exciting stuff in trial right now and a lot of docs are very optimistic.
I was actually more suprised by his second statement -- that if I relapsed he would not recommend re-treatment with current drugs but to wait a few years until better drugs came out of trial. And he's talking to a stage 2-3. He wasn't even that concerned about re-biopsing me right away although I'm not sure if I agree there.
Does that mean there're any guarantees he's right. Of course not. But statements like this from leading researchers do offer hope and must be somehow computed in making tx decisions.
I'll ALSO add that 37 years ago, the leading heptologist of the day -- perhaps of all time -- Dr. Sheila Sherlock -- told me that my "chronic persistent hepatitis" would burn out in 4-7 years. So, yes, there're no guarantees. :)
-- Jim
Hi, I agree with you about "outing" docs, and anybody else in a public forum, unless the info is already out there and you've gotten direct permission from said personage.
Forgive me if I'm wrong, I know another patient of Dr. Schiffs, Snook might have something else to say, but she told me that Schiff says more like 3 years and maybe longer for the new meds. My own doc said more or less the same thing. If the new meds continue to do so well in the trials - they seem to be even more optimistic because of this. And from what I've been reading, if they do really well in those crucial last phases which they are going into - the Feds will fast track them...so maybe more like 3.
Also, I spoke on the phone with one of the main researchers responsible for the Vertex drug, I tracked him down, ha ha! He was really optomistic about their protease inhibitor; but of course he would be. Some of the things he told me really had me excited. But of course I dont want to get too carried away and I try to be cautiously optimistic about the whole thing.
Forgive me if I'm wrong, I know another patient of Dr. Schiffs, Snook might have something else to say, but she told me that Schiff says more like 3 years and maybe longer for the new meds. My own doc said more or less the same thing. If the new meds continue to do so well in the trials - they seem to be even more optimistic because of this. And from what I've been reading, if they do really well in those crucial last phases which they are going into - the Feds will fast track them...so maybe more like 3.
Also, I spoke on the phone with one of the main researchers responsible for the Vertex drug, I tracked him down, ha ha! He was really optomistic about their protease inhibitor; but of course he would be. Some of the things he told me really had me excited. But of course I dont want to get too carried away and I try to be cautiously optimistic about the whole thing.
Are you seeing Dr. William Carey at the Cleveland Clinic? If so, I'd be happy to talk to you off-line about my experience with him. I was born and raised in Cleveland (my family's still there), but I now live three hours away.
Susan
Susan
You've been through a lot. I haven't been following the viradamine trials that closely but conceptually it seems like the right drug for you in the event you don't clear at week 24. Curious...can the doctor's just start substituting viradamine if and when your hemoglobin falls too low, rather than taking you off treatment and starting over? The Vertex and other protease inhibitor trials also might be of interest.
Forgive me for stating/asking the obvious, but your doctor wouldn't be the first to make this mistake. Have they checked your iron stores -- specifically Ferritin and Transferrin Sat ? Procrit will not work unless they're adequate. The fix, of course, is iron supplementation. It's strange because we're usually told not to take external iron, but in some cases it is necessary.
All the best with treatment.
-- Jim
Forgive me for stating/asking the obvious, but your doctor wouldn't be the first to make this mistake. Have they checked your iron stores -- specifically Ferritin and Transferrin Sat ? Procrit will not work unless they're adequate. The fix, of course, is iron supplementation. It's strange because we're usually told not to take external iron, but in some cases it is necessary.
All the best with treatment.
-- Jim
Hi,
My first treatment in 2000 was the old,non-peg combo.
Biochemical response only.
Treat.2 in 2001 Roche peg.+RBV 1000mg,RNA down to 6500.
Ceased owing to g.i problems.
Treat.3 2002,Same regime RNA down to 3000 at 12 weeks,ceased at week 18 due to anemia.hg 7.5
Treat 4,in progress.
My expectation is that I'll test undectable at wk.24,but that anemia will end treatment pre-maturely.
If so I will re-treat with Viradimine replacing RBV.
I also have the option of low dose IF mono maintainance therapy.
I changed doctors this year.Both are top dogs,Professors of Medicine specialing in viral Hepatitis.
My Doc. said he would like to use Fibroscan,but it cots
My first treatment in 2000 was the old,non-peg combo.
Biochemical response only.
Treat.2 in 2001 Roche peg.+RBV 1000mg,RNA down to 6500.
Ceased owing to g.i problems.
Treat.3 2002,Same regime RNA down to 3000 at 12 weeks,ceased at week 18 due to anemia.hg 7.5
Treat 4,in progress.
My expectation is that I'll test undectable at wk.24,but that anemia will end treatment pre-maturely.
If so I will re-treat with Viradimine replacing RBV.
I also have the option of low dose IF mono maintainance therapy.
I changed doctors this year.Both are top dogs,Professors of Medicine specialing in viral Hepatitis.
My Doc. said he would like to use Fibroscan,but it cots
As a cirrhotic 3a, I was advised to treat for 48 weeks. They report high relapses with less treatment. At 48 weeks they claim 60% probability of cure. I'm a 47 yo male, with reasonable body mass index (5'9" @ 163 lbs naked, dry & empty, lol). I think males are harder to treat.
I was told red meat was OK in moderation, and coffee was a 'non-issue'. Just to maintain a common sense healthy diet. As Jim says, check with your doc, your mileage may vary.
I was told red meat was OK in moderation, and coffee was a 'non-issue'. Just to maintain a common sense healthy diet. As Jim says, check with your doc, your mileage may vary.
Marijuna (medical of course ;)) was suggested to me during tx to help nausea and weight loss. The drug does not agree with me so I declined. I personally see no problem with red meat or coffee but as I mentioned before run EVERYTHING by your doctor or Nurse Practioner. If they're going to treat you effectively, you must keep them informed of what you're taking. Your weight sounds great and this is going to help you with treatment.
Not to second guess the esteemed Cleaveland Clinc (OK I will ;) ) but have you discussed treatment length beyond the 24 weeks because of your cirrhosis? Sometimes people treat a little longer with cirrhosis, especially if they respond slowly -- although in your case your other medical concerns may be an issue.
Ask your doctor if he's planning on testing you for viral load at week 4. That tells your treatment team an awful lot regarding how the drugs are knocking down the virus.
BTW the 70% figure sounds very realistic even with 24 weeks.
-- Jim
Not to second guess the esteemed Cleaveland Clinc (OK I will ;) ) but have you discussed treatment length beyond the 24 weeks because of your cirrhosis? Sometimes people treat a little longer with cirrhosis, especially if they respond slowly -- although in your case your other medical concerns may be an issue.
Ask your doctor if he's planning on testing you for viral load at week 4. That tells your treatment team an awful lot regarding how the drugs are knocking down the virus.
BTW the 70% figure sounds very realistic even with 24 weeks.
-- Jim
P.S. I am having that stomach scope next month and also I have polycystic kidneys to deal with too!
Welcome from the other side of the pond :)
Your profile is similar to mine. Curious what you treated with the first time (Peg Intron, Pegasys, Riba, dose, etc.) and what specifically you mean by "partial response" in terms of when you tested viral response and results.
I was also a sofa case for the first 12 weeks although my hemoglobin never dropped that low. Things are better now at week 28 but not a lot. Just gotta keep your eye on the prize.
Hope you have better luck this time around. A few days ago I spoke to a leading researcher and he said that in five years he thinks he will be able to cure just about anyone with the newer drugs currently in trial. So let's hope we both clear this time, but if not, my plan now is probably to wait for the newer drugs.
BTW do you have the Fibroscan test in England. We have three or four test units in the U.S. in trial for FDA approval. It's a very exciting development for dx, tx and research.
-- Jim
Your profile is similar to mine. Curious what you treated with the first time (Peg Intron, Pegasys, Riba, dose, etc.) and what specifically you mean by "partial response" in terms of when you tested viral response and results.
I was also a sofa case for the first 12 weeks although my hemoglobin never dropped that low. Things are better now at week 28 but not a lot. Just gotta keep your eye on the prize.
Hope you have better luck this time around. A few days ago I spoke to a leading researcher and he said that in five years he thinks he will be able to cure just about anyone with the newer drugs currently in trial. So let's hope we both clear this time, but if not, my plan now is probably to wait for the newer drugs.
BTW do you have the Fibroscan test in England. We have three or four test units in the U.S. in trial for FDA approval. It's a very exciting development for dx, tx and research.
-- Jim
Hi again,
I am genotype 3a and V/L of 1.5 mill. I am 5'9" and 122#. My doc said about 70% chance of clearing (i guess because of the cirrhosis). I had active TB about 14 years ago which is a concern and also had 4 reactivations of Toxoplasmosis in my eyes, which also is a concern. Its a wait and see game I guess with these issues. Is coffee and red meat ok to eat? And is mary jane something that can really help side affects of tx? Im all for herbal supplements....lol!
I am genotype 3a and V/L of 1.5 mill. I am 5'9" and 122#. My doc said about 70% chance of clearing (i guess because of the cirrhosis). I had active TB about 14 years ago which is a concern and also had 4 reactivations of Toxoplasmosis in my eyes, which also is a concern. Its a wait and see game I guess with these issues. Is coffee and red meat ok to eat? And is mary jane something that can really help side affects of tx? Im all for herbal supplements....lol!
Tall said prev: "if my posting had been the fifth or sixth in line on this thread, would that have been okay? Perhaps you should take me at my word that I wasn't advocating forgoing conventional treatment..."
Well, then I guess we're all on the same page finally. We all think that because "Painintheside" is a stage 4, that the best route to follow is to get evaluated for conventional combo treatment. Like HCA, I also thought your post was in direct response to Paintheside's since it directly followed.
Well, then I guess we're all on the same page finally. We all think that because "Painintheside" is a stage 4, that the best route to follow is to get evaluated for conventional combo treatment. Like HCA, I also thought your post was in direct response to Paintheside's since it directly followed.
Forseegood said prev: "I think this is where some of us get in trouble, some people can't seem to make that "compute" in their own minds, this issue can get so emotional."
--------------------------------------------------
I agree with much of what you say, but I don't think the problem in my case has anything to do with carrying those two issues at the same time. Again, I am not against exploring antifibrotics whether they be drugs, herbs, etc.
What I do fear -- and HCA said it so well -- is that many come here scared and sick with little background in Hep C. They are looking for answers. And while again I agree with your overall take, to answer a stage 4's question with a study on antioxidants seems counter-productive at best.
This is above all a support group first (Medhelp's terms, not mine) and intellectual discussion group second. :) We should all keep this in mind.
-- Jim
--------------------------------------------------
I agree with much of what you say, but I don't think the problem in my case has anything to do with carrying those two issues at the same time. Again, I am not against exploring antifibrotics whether they be drugs, herbs, etc.
What I do fear -- and HCA said it so well -- is that many come here scared and sick with little background in Hep C. They are looking for answers. And while again I agree with your overall take, to answer a stage 4's question with a study on antioxidants seems counter-productive at best.
This is above all a support group first (Medhelp's terms, not mine) and intellectual discussion group second. :) We should all keep this in mind.
-- Jim
With respect your post is the second response in the thread and therfore bound to percieved by the questioner as a reply to them.
I'm glad I'm not within striking range of your dander!!!
I'm glad I'm not within striking range of your dander!!!
HCA is way off base in calling it "irresponsible" for us to post studies about alternative treatments. His/her attempt to stifle or censor our discussion is what's really irresponsible. We're all adults here. Everyone is free to come to their own conclusion(s) about the significance of posted studies. If a particular study don't interest someone, they should simply ignore it.
I think HCA, like Jim, is making some connection between the posting of the above study and the Stage 4 poster. I, for one, wasn't encouraging that person to forgo treatment for alternatives and I don't think you were either.
Susan
I think HCA, like Jim, is making some connection between the posting of the above study and the Stage 4 poster. I, for one, wasn't encouraging that person to forgo treatment for alternatives and I don't think you were either.
Susan
If my posting had been the fifth or sixth in line on this thread, would that have been okay? Perhaps you should take me at my word that I wasn't advocating forgoing conventional treatment. YOU misunderstood.
Susan
Susan
I'm sorry about your recent diagnosis. I know it's traumatic to get that kind of news. As you can tell from the posts above, there's some confusion among some of our newer members about my position on treatment. Allow me to make myself very clear:
At Stage 4, you MUST treat with Interferon and Ribavirin. There is no other reasonable option at this time for you. If I were in your shoes, I would be seeking conventional treatment immediately.
Please excuse me for hijacking your thread to post the study about alternatives. I did not mean to imply, in any way, that you should pursue this path. That's why I didn't address my post to you, nor reference you or your case. Again, sorry for the confusion, if you had any.
Best wishes to you.
Susan
At Stage 4, you MUST treat with Interferon and Ribavirin. There is no other reasonable option at this time for you. If I were in your shoes, I would be seeking conventional treatment immediately.
Please excuse me for hijacking your thread to post the study about alternatives. I did not mean to imply, in any way, that you should pursue this path. That's why I didn't address my post to you, nor reference you or your case. Again, sorry for the confusion, if you had any.
Best wishes to you.
Susan
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