OMG! Need Direction!

I've joined this forum on behalf of my 56 y/o husband who has HCV which has progressed to stage 4 cirrhosis. He is developing other complications like splenomegaly and portal hypertension, etc. He attempted tx in '03 for 3 months and had to stop due to the stress of work (was a home builder) and the side effects. (developed diabetes shortly afterwards-I think the 2 are related) Anyway, he has genotype 1a and was responding to the Inf/Rib tx, but it was all just to much to handle at once. He was then a stage 2 cirrhosis so in 7-8 years, it has doubled. We have recently been discussing the standard tx with a Tyler TX doc. I came across the teleprevir a few years ago on the internet and then again the other day in a NY Times Magazine article from the summer. I emailed the California doc in the article and he said I needed to check into the trials at the Liver Institute at Methodist Dallas and also Parkland Hospital as the drug would not be available till summer 2011 and also get evaluated for transplantation. I did find a trial which seemed suitable and registered but am not sure what to do next. The Liver Institute seems to be looked upon favorably and I'm not impressed with the attention/concern from the Tyler, TX doc. Should have Medicare in January with a supp policy but won't have $ for all of the gaps! The California doc also mentioned a Dr. Ghalib in Arlington she used to work at Methodist. Things seem to be deteriorating faster than I expected and I really want a better shot at success than the 40-50% SVR that the standard INF/Rib offers. We were told that there is also a chance the tx could precipitate liver failure and with his advanced cirrhosis, that scares the shi$ out of me!

Could really use some input from some of you who "have the t-shirt". I feel we've really wasted some critical time and had no idea things could progress this quickly. So any advice you can offer would be greatly appreciated as I feel we are running out of time.

[copyman]

First thing is to make sure he is not drinking any alcohol. As you probably know this is like throwing gas on a fire. Then have him follow a liver friendly diet, i.e. low salt, fat, sugar. Also take a regime of supplements something like the list that follows. Doing this should give your husband time without fibrosis progression until next summer when Telaprevir will be out.

Here is a list of supplements to reduce fibrosis.  Hope this helps!

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
http://www.raysahelian.com/trimethylglycine.html

Taurine (500 mg) x 2
http://en.wikipedia.org/wiki/Taurine

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


Colon complete complex contains:
Fiber complex (2000 mg) x2
Lactobacillus F19 probiotic (14 mg) x 2
Lactospore prebiotic (20 mg) x2

I use Smartbomb.com as a source except for the Resveratrol.

I will go with Lactulose amd Lactobacillus GG when I use up what I have.

------------------------------------------------------------------------------------
What to take while on tx per HR

The supplements while on tx question is difficult, because the ones having antifibrotic promise are almost all antiinflammatory, somewhat reducing the initiating events at the dendritic cell/lymphocyte interface.I know this sounds technical. Most of them also have, paradoxically an improving effect on some aspects of lymphocyte function, as the spectracell test clearly shows.

Bottom line, NO CLEAR ANSWER possible  regarding  use during tx.

But a moderate use of NAC/VitC, TMG, ALA ( those are quite cheap and possibly  PPC (since it was actually shown to help the SVR rate) is probably a good idea even during tx. Vit D3 is good, but it would be best to know ones serum level.
Also some Inulin is inexpensive (trader joes) and a very good well researched prebiotic. To get any lactulose here in the US  is not trivial.

[Spoon5665]

Good Morning Copy! Why are you up at this hour?  lol I was so excited to read your response and so quickly! I'm a little confused however. Do I need to research the ones you listed and pick appropriately or are all of them suggestions???? The NAC/VitC, TMG, ALA, PPC - are these the ones you use?? I'm just learning about the details of this terrible affliction, so bear with my ignorance pls!!

You seem to be overflowing with information - do you mind sharing your story with me?

[Trinity4]

Your husband should really see a good hepatologist before starting any supplements  If you are uncomfortable with his current his doctor and the standard of care he is receiving, seek out another specialist.  There are some excellent hepatologist out there and someone who lives in your area may chime in with a recommendation.  Even though supplements may be liver friendly, everyone is different and his doctor should be in the loop regarding any medications or supplements he is taking because of the advanced liver disease.

Good Luck
Trinity

[copyman]

These were suggested by a Hepatologist. His exact words were "if I had a relative or child with cirrhosis this is what I would have them take".  I know it is quite an extensive list but this is what was suggested. You can take all or perhaps a few. These supplements will not harm your husband and can only help at this point.

I have finished treatment and only take a few that are on the list. If I had cirrhosis I would be taking all of these supps. I would take them and monitor blood work on a monthly basis. After a few months I would then make a decision moving forward. If labs look good and I felt better then I would continue.

You can run this past your husbands doctor but you will probably here the same story as most doctors will give. That they will not help. Most doctors believe only prescription drugs will help.  That is a bunch of BULL!
Someone with cirrhosis has nothing to lose. Better then doing nothing. Sometimes a person has to take control of their own health and "think outside the box".  Doctors have to follow a certain protocol. Most care more about malpractice and not getting sued then their patients.

This is just my "opinion". The ultimate decision has to be made by your husband and you. Hopefully you can get a doctor to be on board with trying the supplements for a few months to see how it goes.

Best of luck

[Spoon5665]

Thanks for the input Trinity. I'm going to contact the Liver Institute at Methodist Dallas after the holidays and a doc in Arlington, TX that a doc in California suggested. Found a trial I hope he is suitable for with the telepravir but don't know anything about getting involved in the information loop. (emailed a request for the trial, but what else do you do?)

As you say, a good doc is the priority and his current one, I felt simply "processed" us. They did get our attention as to the severity and urgency of tx, but really want a doc who can provide some real caring guidance and information. I am a student nurse and find pts complain most of the lack of info from their caregivers.

I would appreciate any physician suggestions or info on current trials accepting applicants out there with the telepravir. Thanks for the reply. A simple reply goes a long ways towards diminishing the desperation HCV causes. :}

[Spoon5665]

When you get a moment, can you give me more details of your tx, H&P?
Spoon

[Bill1954]

By all means check with your husband’s doctor prior to taking any OTC supplements; his life may depend on this. Qualified doctors are endlessly better qualified to help than some anonymous internet poster who has no personal knowledge of his history. Any recommendations otherwise are irresponsible.

There is often assistance from manufacturers when it comes to Medicare coverage gaps; I treated for two years under Medicare, and didn’t pay anything for HCV meds, but of course Telaprevir hasn’t received approval yet, so no telling how mfgr assistance will play into that.

Good luck, and welcome to the discussion group—

Bill

[Bill1954]

You can peruse a site from the National Institute of Health for clinical trial listings; just enter ‘HCV, your city’ into their search engine:

http://clinicaltrials.gov/ct2/search

--Bill

[HectorSF]

Standard treatment for patients with HCV and cirrhosis is as follows..

He should be seeing a hepatologist at a hospital that performs transplants. Baylor Regional Transplant Institute for example. Only a doctor who treats persons with cirrhosis on a daily basis should  treating your husband, as managing cirrhosis is very different from persons with HCV who's liver disease hasn't progressed so far. You should not delay, your husband's life could depend on it.

As far as treatment, if your husband is still compensated, meaning he has no complications from his liver disease such as bloating of the abdomen, vomiting blood, bruising, etc he may be able to try treatment again.

Realize that because he has cirrhosis of the liver his chances of ridding himself of the virus will be less even with the new meds depending on his previous response to IFN/RIBA treatment. But with current meds it is about 14% according to the PROVE 3 study. SoI believe it is worth doing if he is healthy enough and his doc approves. His only other option is a liver transplant.
Yes there is about a 5% chance that treatment could cause acute liver failure. Should this happen he needs to be on a transplant list at a transplant center. Either way, unless he is lucky enough to get rid of the virus, he will need a transplant at some point. The sooner he is known at the transplant center the better.

I wish you and your husband the best. Yes it is scary, but it is doable. Try to keep a positive attitude. Your husband has no say in how his disease progresses but he does have control over his attitude towards what is happening. Everyone I know that have survived transplant had an inner strength that helped them face the most difficult of times.

Hectorsf

[paen53]

Hector lays it out very well and I'd like to re-emphasize the importance about finding a doc that is well experienced in dealing with cirrhotic patients. We're kinda in a class of our own, it seems, with special needs and concerns - and an experienced Dr. will be aware of them.

Looking back to your husband's prior treament, do you know if/when he went undetectable? This data will play a role in deciding the best options for him. Have they commented on his blood work - mentioned tests like platelets, albumin, bilirubin, creatinine, INR? How well managed is his diabetes? Any kidney involvement with it?

It's terribly overwhelming right now, isn't it? One of the best suggestions I can pass along at this point is to start writing down any questions as they arise - for the next Dr. appointment and/or to research on your own until then. And there will be many, as I'm sure you already know. He is very lucky to have such a supportive and proactive partner to see him through this. My best to you and him.....Pam

[Willy50]

I agree; go with a specialist.

There will be some Vertex Telaprevir trials for  people in the pre-TP or post TP classes.  these could be coming soon and if you are shopping for a doctor you may also consider the clinic/city they may work out of.

IF you shop the clinical trials site you can see where these trials were performed in Texas.  You can access the older trials that list locations.  The trials which i refer to are coming but not yet listed, however your specialist may be aware of them.

As mentioned, advanced cirrhosis is a strike against you when you are treating, but one might also consider getting a newer genetic test which may indicate a predisposition towards response.  This coupled with a past response history *may* put him in the running for one more pass at TX.  (and it could be a freebie IF he is a candidate for such a trial)

Since no one here knows the labs, exact staging etc, I would imagine that the best evaluation of his chances of treating would be by new specialist you seem to be shopping for.

best wishes, keep trying and keep reading.

Willy

[copyman]

Please keep in mind that every member on MH giving you advice are "anonymous internet posters". These posts are our just opinions. Some may think they are experts but in reality they are just "anonymous internet posters" like everyone else.

As you requested I will contact you privately regarding my treatment & supplements.

I know things are rough right now but try and have a good holiday

[his3707]

The California doc also mentioned a Dr. Ghalib in Arlington she used to work at Methodist.

I have been to the Liver Institute and also Dr Ghalib in Arlington.  (She was my doc at liver institute)  I liked the staff and felt very comfortable both places.  Dr Ghalib called me personally about a trial that I decided not to go into.  She just talked about my choices and what was coming up in the future 30 minutes .  If I had to pay for that call it was worth about 2 grand.  Havnt seen a bill yet. I will go with her when I treat this summer    Best wishes! .  

[fretboard]

The idea for your husband to start taking some supplements is a good one, if he has compensated liver disease.  You may want to call his doctor at the minimum before starting him on any supplements because of inflamation (inflammation).  There are many companies who sell multi-supplement type products which will have most of the listed ones so all you gotta do is go to google.  

Once you get ahold of the clinical trial site, you may want to go over there with your husband to make sure he is eligible for tx and that he gets a call so he can get in the trial.  Give them a call every couple of weeks to show interest and determination, once a staff member knows your name and situation, then you will have someone pulling for you.  Your chances will improve way more than simply making a telephone call and waiting to be contacted.  Here's a link that gives a little info on compensated or decompensated liver disease.  good luck

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/cirrhosis.pdf
    

[child24angel]

"Some may think they are experts but in reality they are just "anonymous internet posters" like everyone else. true copyman that includes
you" ?

"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 "

You can post supplements all day long, the true fact
is, not one size fits all.  Always consult with your doctor or
medical team  , trust me on this.  

Curcumin Drug Interactions
      Turmeric may increase the risk of bleeding or potentiate the effects of warfarin or other blood thinning therapies.

Reported side effects are uncommon and are generally limited to mild stomach distress. There is some evidence to suggest that turmeric extracts can be toxic to the liver when taken in high doses or for a prolonged period of time. For this reason, individuals with liver disease, heavy drinkers, and those taking hepatotoxic medications should have liver enzyme tests and be under the care of their physician if they also wish to take turmeric products

Just my opinion !!

http://www.advance-health.com/curcumin.html

Just be careful and Good luck !!
Elaine

[orphanedhawk]

I was in his shoes and landed up needing a liver transplant.Insurance will pay for this. There are programs available to get free or reduced meds, etc.

In the meantime, put him on as close to no salt diet as possible. This isn't easy but its doable.
Read all labels. Avoid processed foods. No alcohol, ever!
Coffee is okay.
Stay away from red meat. Use soy or eat fish or chicken for protein. Try to eat fresh food without additives.
The idea is to make it easy for the liver which is a filter for all we eat.

Take care of yourself so you are clear headed and well rested in order to take care of him.
Good luck,
OH

[copyman]

Perhaps you read my post to fast or you have a lot of stress during this hectic holiday season and missed that it included me. Just in case I will post part of it again.

"Please keep in mind that EVERY MEMBER on MH giving you advice are "anonymous internet posters". These posts are OUR just opinions"

Looks like that includes me as one of the anonymous internet posters. Happy Holidays :)

[frijole]

Dr Gahlib was my hepatologist at the Liver Institute in Dallas.  Last year I received a letter saying she had gone on leave, and later another letter saying she was no longer with the Liver Institute and I would be taken care of by another of their fine doctors.  I have not been back since.  I did not know where she had gone, and am glad to hear she is still in the vacinity.

I was always very pleased with her but I did not treat with her, merely consult.  I was referred after my relapse.  She seemed like a very good and very competent doctor so if you consult with her, I believe you will have made a good choice.  However, the trial you refer to is probably at the Liver Institute since it usually takes a big facility to do the trials.  I think you will make a very good choice if you treat there too.  Either one is probably a much better choice than your Tyler doctor.

Good luck, frijole

[Isobella]

~~(emailed a request for the trial, but what else do you do?)


Follow up with a phone call.  Or two, or more.  Once you've done the research and found a trial that works for your husband, I suggest staying in close contact with the center running the trial.  I found that helped me when I was shopping for my trial.  My center had only 12 spots and I wanted to make darn sure I had one of them.  

Good luck to you both.  Please keep us posted.
Isobella

[Spoon5665]

Tks for the website. I was not aware of the difference in compensated & decompensated-sounds like a symptoms label.

From what I read, he is compensated at this time. We have a doc apt on the 4th to request a transplant evaluation referral. Hopefully, we'll end up at Baylor with a good Hepatologist and can get moving on SOMETHING!

I really was not aware of the volatile progression of things and no one emphasized it well enough for me to understand we were on a short time line! I had be told that this disease progression was not linear, but I guess I needed some PICS to help me with "linear" as opposed to "sinking like a rock!" His cirrhosis has doubled in 7 1/2 years from a 2 to a 4.  Are there levels of stage 4 cirrhosis, like the beginning of a 4 and the end of a 4?

On the trials, I'm continuing my phone calls. As you mentioned, being persistant seems to be the key, so I'm making lots of notes I can follow up on. (Have contacted Baylor, Vertex email address for clinicals and Dr. Ghalib's office in Arlington TX gave us a call.

Thanks for taking the time to reply.

Spoon5665

[Spoon5665]

Pam, Thanks for your response. I did not previously know that the cirrhosis caused this thing to become a different animal! WOW! Still getting shocked about how LITTLE information you get at the doctor's office!

Hubby's tx did not go undetectable. His viral load was reducing but I don't remember the count. (am working on getting the records from St Louis MO) His latest labs from Oct included PLT count was 79, Albumin was 4.3 (range 3.5-5), Bili total was 0.6 (range 0.2-1.3), AST was 49 (range 15-46), ALt was 69 (range 11-66), creatinine was 0.8 (range 0.8-1.5), PT/INR were both acceptable.

His DM is not great but could be worse I guess. There was supposed to be an A1c run on this report but don't see it anywhere. His BS runs average of 160-215 depending on his diet. He does respond well to dietary changes and the oral meds. He is on Lantus 50 units qd and 1 table of Janumet (which is 50mg Sitagliptin/1000mg Metformin) qd and sometimes BID.  Just bought a book by Dr. Neal Barnard hoping to get the DM where it should be. I think the Inf/Reb tx had something to do with the onset of the DM-everything was just too coincidental! I worry too all these DM meds are hard on the liver. His kidneys seem to be OK so far; GFR's are 100 from Oct and 117 from April, but he does have Htn with BP on the 27th 162/87. I (doctor Cheryl) added one more tablet of the Metoprolol 50 mg (total 200mg qd) to his qd regimen and this morning's BP was 136/77. Guess I should discuss this with the doc too huh??? hahaha

Am not sure how to read his viral load though. The labs comment "see report" but there is no report for the genotype. I know he is type 1 (hardest to treat)

The report says:

Hep C RNA PCR     581 @ avg 2,921,820 = 581
HCV log 10             6.466

Then there is a comment "TEST INFO"  THE REPORTABLE RANGE FOR THIS ASSAY IS 43 TO 69,000,000 IU HCV RNA/mL

So is hubby 2,921,821 on a scale of 43 - 69,000,000 for his viral load?

Anyway, yes it is overwhelming! He was diagnosed in 2003, but we have had our head in the sand!  Thanks for all the suggestions and the doc questions ahead of time is another good one. I've mentioned it before, but all of the active forum members are an incredible source of information, support and comfort!

Keep in touch.  God Bless!
Cheryl (Spoon5665)


It's terribly overwhelming right now, isn't it? One of the best suggestions I can pass along at this point is to start writing down any questions as they arise - for the next Dr. appointment and/or to research on your own until then. And there will be many, as I'm sure you already know. He is very lucky to have such a supportive and proactive partner to see him through this. My best to you and him.....Pam

[Spoon5665]

Dear His3707,
Dr. Ghalib office, to my surprise, contacted me the 27th. They got our name from a trial screening website I filled out on clinicaltrials.gov.  The trials research representative said she would call me back, so I wrote some notes, hoping to keep tabs and call her back if I don't hear anything.

Any other details for getting a foot into the "Clinical Trials Door" would be appreciated!

Spoon5665

[Bill1954]

Hi Spoon—

Addressing your question “Are there levels of stage 4 cirrhosis, like the beginning of a 4 and the end of a 4?”

Sometimes the Child-Turcotte-Pugh score is used to describe stages of cirrhosis; for instance, a person with compensated cirrhosis might be classified as ‘stage 4 (cirrhosis), Child-class A (compensated):

http://en.wikipedia.org/wiki/Child-Pugh_score

The MELD score probably provides a more accurate assessment overall though:

http://www.cpmc.org/advanced/liver/patients/topics/MELD.html

http://www.liverdisease.com/meld._hepatitis.html

It’s unlikely your husband will be listed for transplant until his MELD score approaches 15 or 16; however, I believe this varies depending upon location.

Good luck to you both on the 4th; let us know how things go—

--Bill

[Spoon5665]

Bill, Tks for the references-You are amazing!  Don't expect too much to happen on the 4th except my letter of referral I need. Dr. Fred Poodad from CA suggested 2x's in 2 emails that this is what I probably needed to do. I was thrilled to get a response and some direction from a stranger who seemed to care. Since he mentioned it 2 of 2 times, I felt motivated to pursue it. Still don't know why my Tyler doc wasn't as interested! They received MONEY for our visit! (I'm being a little tacky-but to repeat my repeated comment-this site is so full of good people with incredible knowledge they are willing to share-for free!)
Will keep you posted!
--Spoon!