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1176058 tn?1263696907

Stage four just diagnosed

Hi, I'm totally new to this forum but have questions about my diagnosis.  I recently met with hepetologists at the University of Washington Med Center and was told my hep c had progressed to level four with a meld score of 12. When I asked the Dr. what the prognosis was for me he said two years. What can I do diet wise to prolong my health?  Do you know of any links to go to I can use?  When people look at me they would not know there was anything wrong with me and I guess that means I am compensating very well so far.  But what can I do as far as eating right.  I am talking milk thistle every day and watch the amount of meat proteins but need help.
16 Responses
Avatar universal
Hi ,there is alot of people on this forum that know alot more than me.But,I would think at stage 4 I would start treating as soon as possible.Please don`t sit back and do nothing.I don`t understand why your doctor said 2 years without recommending treatment.Start asking questions and seek treatment right away.Please don`t rely on milk thistle.It will not cure you.I took milk thistle for 15 years thinking thats all I had to do.Since that time my biopsy has gotten worse not better.I now wised up and am starting treatment on Thursday.Please,don`t wait.
87972 tn?1322664839
Hi there,

Sorry to year of your diagnosis and situation. Welcome to the discussion group, by the way.

To begin with, with a fully compensated liver, I’m unsure of any advantages in avoiding animal proteins; in fact, adequate dietary protein is essential for your liver to continue to repair itself. If you’re not currently dealing with confusion, i.e., hepatic encephalopathy, I’d think it wise to continue eating a well balanced diet. If you want to reduce fatty foods, that might be advisable.

I ditto the concern with the poster above about milk thistle; it might not hurt, but be sure to discuss this with your medical doctor.

You should probably schedule an abdominal ultrasound scan to look for any untold masses in the liver; and also request an endoscopy as well as a colonoscopy. These can rule out varicies that can develop with advanced liver disease. When the liver becomes cirrhotic, hypertension can develop in the portal tract of the liver; this can eventually cause bleeds in the esophagus, and occasionally in the rectum. Caught in advance these can be banded and dealt with; no real big deal. If left unchecked, they can cause serious problems.

As the other poster suggested above, you might discuss HCV treatment with your doctor. Have you treated with interferon/ribavirin previously? Where are you at with this?

Best of luck to you; I see your wife is an RN; she can probably offer you good advice and counsel. Stay tuned, there are many exciting development in HCV management brewing; new drugs known as protease inhibitors should be on the market shortly; these should greatly increase the efficacy of the current therapy.

Clear all meds, herbs and supplements with your medical team prior to taking them; and of course, if you drink or use, stop. If applicable, doctors will ask you to demonstrate a period of sobriety prior to any consideration for transplant, should it become necessary.

Best to you going forward—

163305 tn?1333672171
Did he mean you have 2 years to live?

When I was diagnosed I already had decompensated cirrhosis and acsites.
I tried treatment, relapsed and had a transplant a good 4 1/2 years later. I thought my liver deteriorated quickly.
Nobody ever gave me a time based prognosis although transplant was mentioned over and over.

Do you have compensated or decompensated cirrhosis?

But to answer your question, drink lots of coffee and use lots of turmeric. I'm not kidding. There is research supporting the ability of both to be protective to the liver.
Try to eat as organically as possible, avoid processed foods and red meat. Your liver  filters everything.  Avoid excess iron.Too much iron alone can cause cirrhosis. I take a multiple vitamin w/o iron.

We aren't supposed to give out web sites of this site. Try googling hepCnomads. They have a thread which may help you.

I saved this concerning foods and supplements for HCV:

Eat foods to increase nutrients beneficial to liver function.
These are:
Vitamin K - green leafy vegetables and alfalfa sprouts.

Arginine - this helps the liver to detoxify ammonia, which is a toxic waste product of protein metabolism. Arginine is found in legumes (beans, peas, and lentils), carob, oats, walnuts, wheatgerm and seeds.

Antioxidants - found in fresh raw juices such as carrot, celery, beetroot, dandelion, apple, pear and green drinks like wheatgrass and barley-grass juice, and fresh fruits, particularly citrus and kiwi fruit.

Selenium - sources of the antioxidant selenium are Brazil nuts, brewer's yeast, designer yeast powders (very good source), kelp, brown rice, molasses, seafood, wheatgerm, whole-grains, garlic and onions.
Methionine - is essential for detoxification. Is found in legumes, eggs, fish, garlic, onions, seeds and meat.

Essential fatty acids - Seafood, cod liver oil, and fish oil. Seafood may be fresh, canned or frozen such as sardines, salmon, mackerel, tuna, trout, mullet, blue mussels, calamari, tailor, herring, blue eye cod, gemfish. Fresh avocado, fresh raw nuts and seeds, legumes (beans, peas, lentils), whole grains, wheatgerm, green vegetables such as spinach, green peas and green beans, eggplant, cold pressed fresh vegetable and seed oils, freshly ground seeds, especially flaxseeds (linseed), evening primrose oil, black-currant seed oil, star flower oil. Essential fatty acids are required for healthy membranes in every cell of the body and plentiful amounts are required for healthy liver function. This is why strict low fat diets are not beneficial for general health, weight control or liver function.

Natural sulphur compounds - are found in eggs (preferably free range), garlic, onions, leeks, shallots and cruciferous vegetables such as broccoli, cauliflower, cabbage and Brussels sprouts.

Avatar universal
if overweight get close to your recommended BMI.

avoid fatty foods, excess sugar & salt

move forward under the care of a Hepatologist (liver specialist). there are pleanty of people that treat hepatitis with stage 4 fibrosis.

you may also consider all or some of the following supplements. These were recommended by a doctor / hepatitis researcher that has visited this forum:

HRs' Liver Lover Supplement List

I have added links if additional info wanted.

a multi vitamin/no iron

1000 mg of Salmon Oil (epa=160 mg / dha=240 mg / omega 3 = 400 mg) x1

1000 mg of Flaxseed Oil (ALA/omega 3 450 mg / omega 9 110 mg) x1
Raw flaxseed/ 1 teaspoon daily

Hepatapro PPC (900 mg) x 2
info:  http://www.medhelp.org/posts/show/346752  ;

Resveratrol (500 mg) x1  and x2 (alternate every other day)
info:   http://www.lef.org/resveratrol/
source:   http://megaresveratrol.com/

NAC--(n-acetyl-l-cysteine) A sulfur compound that is a precursor of glutathione and protected sulfur-containing amino acid  (600 mg) x2 with Vit C (500 mg) x2
Info:   http://tinyurl.com/9yopf

TMG (750 mg) x 2

Taurine (500 mg) x 2

Life Extension Super Curcumin W/Bioperine 800Mg 60 Caps (800 mg) x 2  / Powerful Antioxidant Properties to scavenge free radicals
Anti-Inflammatory Actions
Enhances important detoxification enzymes Curcumin increases the secretion of bile by stimulating the bile duct. It also protects the liver by detoxification, stimulating the gall bladder and scavenging free radicals. With the help of the adrenal glands, it inhibits both platelet aggregation and the enzymes which induce inflammatory prostaglandins. Curcumin may also help break down fats and reduce cholesterol. Large doses not recommended in cases of acute bilious colic, obstructive jaundice, painful gallstones, and extremely toxic liver disorders

Sylmarin (425 mg) x 2 / Milk thistle provides hepatocellular protection by stabilizing hepatic cell membranes.

Green Tea Extract (300 mg) x 2 /
info:  http://tinyurl.com/ypdp9q

Coq10 (200 mg) x 1 / http://tinyurl.com/29em8c
Avatar universal
Hi nuthatch--
Your MELD score can be used as a prognostic tool. Its design was to predict mortality based on certain lab values (unos.org) . A score of 12 is appx equivalent to a 7-9 on the Child-Turcotte-Pugh or a B classification. This predicts a one year survival rate of 80% and a two-year survival rate of 60%. The accuracy of these numbers could be influenced one way or the other based upon variables that only your treating doctor may be privy to. The exact biochemistry (level of certain lab values) involved in creating your MELD score and CTP classification can affect prognostications. If I were in your place I would assume the doctor is probably in the ballpark with his numbers. Has anyone discussed the possibility of a liver transplant with you ?

Protein is protein, however there is less protein per gram when it's sourced from vegetables. Veggies are more easily digested too, and you get fiber as a bonus. But, protein is not the only cause of encephalopathy. Watch the dosages you take for all drugs---even OTC---they can build up in the blood.  Overexposure to any and all toxic substances can trigger encephalopathy as well. Restrict your sodium intake. No shellfish (clams,mussels,oysters,etc). Stay sensible with iron intake. These are just a few general recommendations but I would consider talking to a dietician at the U of W. They counsel people all of the time who have HCV stage 4, and can offer the best and most precise info for someone with your stage of the disease and symptoms.

Best of luck going forward.
Avatar universal
Hi terca

"But,I would think at stage 4 I would start treating as soon as possible.Please don`t sit back and do nothing.I don`t understand why your doctor said 2 years without recommending treatment."

Its tricky business treating someone with a decompensated liver. The same way tx can push someone into decompensation, it can also push those who are already decompensated into fulminant liver failure. There are doctors who will treat this population, but not many. Many variables are taken into consideration with this advanced stage of disease and in many cases the doctors will deem tx too risky. The chance for SVR is very low with advanced disease. As an example, a relapser, geno 1, with a MELD of 12 probably has less than a 15% chance at SVR. On top of this, in all likelihood it would not prevent the need for a transplant.  Its highly probable that someone in this position would have substantially better odds of achieving SVR after transplant. I understood your reaction as it seems logical on the surface but as someone who is in a very similar position as nuthatch I wanted to let you know that reasons exist why someone might not treat at such a late stage.
Avatar universal
As I read this thread I see a lot of great advice, a tremendous amount all in one thread.

Not much that I would add to it, but a few things.

You might make sure of where your ferratin is (that is a test that pertains to your iron stores).  If it is high you might consider phlebotomy to remove the excess, although that can be tricky if your platelets are low.  I believe there may be pills that can aid in iron removal if platelets prevent phlebotomy.Even so, it your iron is high you might then consider a variety of diet changes which could either serve to lower your ferratin score.
If it were high I would certainly reduce iron rich foods, red meat is the worst culprit.  Far better to stick with poultry.  Once again, if it is high and your doctor doesn't wish to reduce it via phelbotomy there are are a lot of methods, same as used by people who suffer from hemochromatosis or iron overload.  I don't want to over-emphasize this since you are not DX'ed with it but many over males with HCV have an excess of iron stores and it is one thing that can be relatively easily remedied.

I would also echo the sentiments; reduce meat if you are already eating an over abundance of it (many americans do), reduce salt, reduce fat, reduce sugar intake.  If one were to adopt a diet I think that the South Beach diet would be a good approximation.  I'd ask your doctor their nurse about that.  I would also add some course of exercise, maybe walking, if your doctor approves.

I think that I'd be careful about adding a lot of experimental supplements to the mix.  (I also think reservatol may have just failed in a trial specific to HCV)  If you are seeing a transplant team or are pre transplant it suggests that some of the ordinary things that people of normal health *might* safely experiment with should be run by them.  It's good advice to have all such things listed and run by your doctor, the transplant team if and when they are called in and routinely run all medications with your pharmacist, especially when new items are introduced.  I also suggest getting copies of your medical records and personally reviewing what you are doing so that you have a better understanding of what is happening, as it happens and with luck, even before.

I would also use this forum as a tool.  Use the search engine to get more info on many of the things you you face or have questions about.  There is a lot of information here and over time you will add greatly to your understanding of your current issues.

Best of luck,
1176058 tn?1263696907
Nuthatch here.  I'm afraid I'm more complicated than I first described.  I also suffer from an idolent Non Hodgkens lymphoma which could get much worse with tx and which precludeds me from a transplant list.  Just met with the transplant team at Univ Wash and that hepatologist was the one that gave me the two years if un treated. He stated that with my lymphoma lowering my auto immune system could really play havoc with the lymphoma and excellerate it to quite a aymptomatic state.  Right now it's laying there quietly.  I'm due for a CT scan in one and a half months.  Your news about my Dr. being in the ball park is sobering and I wish there was something I could do to prolong things but as you can see my hands are tied.
Avatar universal
I didn`t know that.That is why I am on this forum,I have learned alot in the short time I have been on here.Since I am starting treatment Thursday I am trying to learn as much as possible.That does prove what I have been saying here,it is better to treat sooner rather than later.
1176058 tn?1263696907
I wish you the best with your tx and your right there is a lot of information to be had at this site.  What stage are you in your HIV?
Avatar universal
Hi nuthatch-

I am sorry to hear about your lymphoma and it certainly adds another dimension to the challenges you are facing. Now, if understand you correctly, one doctor believes hcv tx could possibly trigger your lymphoma to become symptomatic ? Or is it that this doctor is worried that by treating your lymphoma it could exacerbate it and its best to leave it alone? Do you know what stage it is or will this be your first CT since diagnosis ? And then on a separate occasion you were told by the hepa doc that without hcv tx you have a 2 year survival ? Do I have this right ? I inferred from your post that you do have the type of non-HL that can be treated but there is a risk that it can  become symptomatic if the tx for it is unsuccessful ? If you can correct me where I'm off I'd appreciate it, but if I am understanding you right, then it would appear that the indolent non-HL is your primary enemy in your life right now. Is this the consensus amongst your doctors or are there varying opinions ? Regards,
Avatar universal
Hi,I really don`t understand the numbers.My doctor said they are not bad.Inflammation was given 4/18 and scar tissue and fibrosis was given 2/6.that isn`t bad since I have had this over 25 years.I know that some on this forum recommend not treating with numbers like that.But I am looking to the future where if this virus gets worse I may not be in the shape I am in today to fight it.I want to see my grandchildren grow up,so I am fighting it now.It is a clinical trial,testing a new drug.I have my fingers crossed.Thanx for wishing me the best.
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