Magnum Biopsy Report

Just spoke to Dr. Gish's assisting Dr. Frenette. In spite of what Dr. Gish thought, I do NOT have Cirrhosis! I am stage 3. This has advanced from stage 2/3 three years ago. So even though there is advancement in the disease, I am not Cirrhotic. Whoo hoo...

More: The doctor feels I should definitely go for the VX-950 because the further along the scarring gets, the harder to treat. Here's something else of interest. The doctor said a very recent study shows the VX-950 to be effective in clearing at 50% for non-responders like myself, as opposed to the 10-15% with traditional therapy. I'll take that...

More: The doctors recommend Selenium to their patients. It's recommended at 600mcg daily, best taken three times daily at 200mcg at breakfast, lunch and dinner. The doctors feel this is of great benefit in boosting the immune system...

So here's the wrap-up. Doctors sometimes "feel" (in doctor Gish's case) and sometimes "think" a person may be Cirrhotic. However, as proven time after time, the only definitive answer is a biopsy.

And finally, the doctor feels VX-950 is at least 2 to 2.5 years away still before release to the public....

Magnum

[it'sallgood]

thanks for the selenium tip.  nothing like hearing a recommendation for a supplement from one of the top liverheads.  great news on the biopsy report and best of luck in the vertex trial my friend.
eric

[Trinity4]

Glad your biopsy gave better results than you originally thought.  Stage 3 (me too) is very concerning and you are fortunate to be in the VX-950 trial.  It's always been my belief that liver damage advances more quickly once we pass 50.  This will be my last time at the rodeo with current SOC if I don't reach SVR.   I wish the new drugs were available now.  Let's hope in the very near future anyway.  Good Luck
Trin

[mikesimon]

I take that as very good news. I wish you luck Magnum. Mike

[gauf]

congratulations mag!  I take 400 mcg selenium daily but will up to 600mcg.

[smaug48]

Sounds like good news, congratulations!!!

smaug

[zellyf]

Good news!  Have been quietly following.  Is the selenium for all liver patients or those with known advancement?

[fretboard]

Glad you got some good news.  Was the doctor telling you that you had cirrhosis, by reading your bloods?  God Bless

[Rockerforlife]

Brazil nuts are one of the most concentrated food sources of selenium, featuring about 70-90 micrograms per nut.
http://www.whfoods.com/genpage.php?tname=nutrient&dbid=95

[Rockerforlife]

Brazil nuts are the most highly concentrated source of selenium. In fact, scientists have shown that a daily Brazil nut is a better source of the mineral than taking a supplement.

[eureka254]

It's good to see you moving forward on an optimistic note.  Congratulations on some really feel-good biopsy results!  Best wishes.
~eureka

[Magnum]

Thanks for your well wishes everyone. As for Dr. Gish saying  he "feels" that I was at the beginning stages of Cirrhosis, he based that on not only a premonition, (given the nearly three years since the last biopsy), but also on the Meld scale that read 7. Scales, schmales.

Don't get me wrong, Dr. Gish is a great and very caring, knowledgeable doctor, otherwise he would not be the director of transplants. However, scales can go up and down just as ALT and AST readings can go up and down. I was told that when that Meld scale reaches 20, you will be put on the transplant list..... Interesting....

At any rate, I will go head first into the Vertex trial in spite of the hardships and cost. This was strongly advised. The doctor said that after grade 3, it’s 4, otherwise known as Cirrhosis. So let there be no doubt that I’m not out of the woods and this is not an absolute celebration, but a celebration none the less.

In my own opinion, regardless of what I’ve always heard from various doctors stating that feeling great doesn’t mean you are not in trouble, I listen to my body. My body at this point is telling me I feel nearly great and very strong. Good enough for me. Good enough for you?

As for the supplement question as to wether or not to take it if in an advanced damage prognosis or any liver damage, the doctor didn’t say one way or another. One last note: I did read that too much Selenium can be dangerous. My friend Rockerforlife stated that each Brazil nut has 70-90mcg of Selenium, before popping down a bowl full, I would read up on the adverse reactions to the liver. Otherwise, may we all clear and may we all celebrate...

Magnum

[frijole]

Congratulations.  That biopsy is wonderful newsn not that 3 is so great but it's a lot better than 4.    I think you are wise to begin the trials, even though you will have a 350 drive or fly.  As you progress in treatment, is there a family member that will be able to drive you if you don't feel like it?  
frijole

[Marcia2202]

I somehow missed this one. I am so, so, so happy for you. Beautiful news!

Wishing you all the best....


Marcia

[gauf]

from LE website:


"....Interactions between selenium and other dietary constituents may affect the biological properties of selenium. In some studies, selenium supplemented with vitamin A provided an additive effect against breast cancer, but the protective effect was nullified by vitamin C.273 Selenium toxicity is rare in the U.S.— even in areas with high environmental level.274,275 The tolerable upper intake level (UL) for selenium is 400 micrograms per day (mcg/day) for adults.276 High levels of dietary selenium have been associated with decreased levels of thyroid hormones277 as well as impairment of natural killer cells. At extremely high levels hepatotoxicity, gastrointestinal distress, hair loss, white blotchy nails, garlic breath odor, fatigue, irritability, and mild nerve damage have been reported...."

On second thought, think I will stick to 400 mcg daily.

[Magnum]

Here we go once more with different opinions by different doctors regarding Selenium. I will be contacting Dr. Frenette again today and find out why the Gish team recommends 600mcg daily. There may have been more recent studies. At any rate, I will post the answer...

Magnum

[Magnum]

This partial report is from the Hepatitis C Choices

http://www.hepcchallenge.org/choices/supplements.htm

Selenium

Selenium is a mineral that has been investigated for its potential to improve immune function and decrease cancer risk. Selenium provides powerful antioxidant protection to the body via the selenium-containing enzyme glutathione peroxidase. This enzyme helps the body maintain sufficient levels of glutathione in the liver and all other glutathione containing cells of the body. Selenium is one of the most crucial of all nutrients for maintaining effective immune responses. Many cancer researchers believe it is one of the most important nutrients in preventing cancer. 16

Selenium is one of the antioxidant nutrients found in significantly reduced levels among people with hepatitis C.3 People with hepatitis C who did not have cirrhosis had selenium levels 20% below normal, and those with cirrhosis had levels 40% below normal. Selenium is very important both as an antioxidant and as a cancer prevention agent. Therefore, low selenium levels in people with hepatitis C could contribute to progressive liver damage and the development of liver cancer. A recent study looked at blood selenium levels in 7,342 men with chronic hepatitis B and C and their risk of developing liver cancer (hepatocellular carcinoma).17 For analysis, the participants were divided into four groups based on their selenium levels. The study found selenium levels were lowest in the men with chronic hepatitis C. Participants in the group with the highest selenium levels were 38% less likely to get liver cancer than those in the group with the lowest selenium levels. This decreased risk of liver cancer was greatest in the men with chronic hepatitis C who smoked and had low levels of vitamin A or carotenoids. Carotenoids are vitamin A-like compounds and include beta-carotene. Although this study does not prove that selenium is the direct reason people developed less liver cancer, other studies have shown that selenium does play a protective role against liver cancer in people with chronic hepatitis.

Another selenium study conducted in China, an area with high rates of chronic hepatitis B and liver cancer, involved 130,471 people. Participants were given table salt that had been supplemented with selenium and were followed for eight years.18 The rate of liver cancer in people taking supplemental selenium was found to be one-third lower than the usual liver cancer rate observed in that area. The same study included 226 people with chronic hepatitis B. Participants were given either 200 mcg of selenium daily or a placebo (an inactive substance), and were followed for four years. No one in the group that took selenium (113 people) developed liver cancer. Of the 113 who took placebo, seven developed liver cancer. The selenium was then taken away, and both groups were followed for another four years. The incidence of liver cancer in people no longer taking selenium rose to a rate similar to those who never took selenium. This indicates the supplemental selenium may have had a preventive effect on the development of liver cancer in this particular group of chronic hepatitis B patients.

A study that examined selenium levels in HIV-positive people showed people coinfected with HCV and HIV had lower levels of selenium than those who had only HIV.19 HIV infection is more likely to be fatal in a person who is selenium deficient.20 Clearly, having HCV, HIV, and low selenium is not a good combination. We know coinfected people experience an accelerated rate of disease progression. Although we currently have no proof that selenium deficiency is a cause for accelerated disease progression, having adequate selenium appears to be helpful.

Studies on selenium supplementation have used 50-400 mcg (micrograms) daily of different forms of selenium. Research is currently underway at the University of Miami with HIV positive patients taking 400 mcg of selenium per day (M. Baum, MD, and E.W. Taylor, personal communication). Selenomethionine, a well-studied form of selenium, appears to be one of the safest and most absorbable forms of selenium. Other forms of selenium can be toxic at high doses.1

Selenium provides general antioxidant protection and immune defense. Selenium in doses of 200-400 mcg daily may also provide protection against the development of potentially life-threatening liver cancer.

Magnum

[Magnum]

A very good site for those in the dark about liver disease, or those who need more information...

http://www.hepcchallenge.org/choices/progression.htm

magnum

[Magnum]

Got a response from Dr. Frenette. She said 600 is what she recommends. 400 should be fine, but 600 "may" be more beneficial. I tend to side with you on this one and stay with 400 to be sure...

Magnum

[Marcia2202]

I'm sticking to 200 mcg. But I'm a bit chicken on the supplements. Am kind of taking half or lowest doses recommended. I might up them later while further into tx.

[gauf]

Thanks! 400 mcg it is.

[debnevada]

Carrie Frenette is a good doc.  conservative, moreso than Bob Gish.

Good news on the biopsy, man.

I'm still working on the contacts from Saundra, by the way.

[Magnum]

Thanks Deb. I spoke to Saundra as well. I'm trying all I can. I will now work on Vertex to fork over some money, as Dr. Frenette said they can also be instrumental in getting this done. I have to put on the pressure. I'll call you soon...

Mag

[nygirl7]

I'm VERY happy for your great news magnum.  VERY VERY happy.  Big difference between stage 3 and cirrhosis!  That has to be so encouraging for you!

I took selenium as part of my regimen when I treated.  

Just recently I've started on ACAI BERRY JUICE..............supposed to be one of the greatest combinations of antioxidants / omega fats / electrolytes / proteins and vitamins A, B1 and E in the world. I have the one called MonaVie and it looks like sludge because they keep the berry skin and the good parts in the juice (unlike most juices) - well it looks HORRIBLE but it's DELICIOUS. You just take a shot in the morning and a shot at dinner and that is easy enough for me to remember.

Everyone at my job swears by it for general overall health improvement so I figured what the heck.

WOW - everyone who knows me must have just passed out to hear me talking about health food supplements instead of cheeseburgers but I have to do something to offset all the french fast and fast food I live on right?!

[willing]

congratulations - great news!Hopefully this also gives you a bit more room/time in planning your next move.

[hopeful51]

I am very glad to hear you are not at a stage 4!!!! This IS great news
Sounds like you have great Doc's too.
I am some times baffaled by conflicting info that I get so I have a few ?
Maybe you or others can help me with.
As I was told at biopsy that I did not have cirrhosis( or visiable signs... ya gotta love that)but was at stage 3 with bridging fibrous and portal hypertension this by my first Doc who I tx"d with/ Now second Doc and a consult with third Doc say you can't have B.F or P.Hyp and not have a cirrhotic liver. Were you or anyone else diagnoised with this and have any info.
Magnum I'm still checking everyday for the next VX-950 trial to open and hoping it's in Seattle.
Hang tough
Hopeful51

[Magnum]

I'm in the same situation as you. Everything will be explained in detail tomorrow when I see my Gastro. I did however ask the direct question "am I Cirrhotic? to the Hepatologist, and she replied "no". She further stated that stage 3 still has to be addressed ASAP as to avoid further scarring, making it harder yet to treat,,,

I will let you know what the Gastro says tomorrow...

Magnum

[hopeful51]

Thanks Magnum

I'll be waitin' to hear what they have to say...


Hopeful51

[Magnum]

Here we go again with different takes on the same old subject.....

Dr. Gish's assisting doctor said I do not have Cirrhosis. The Cat scan report says Impression: Early Cirrhosis with Hepatic cysts.

The Gastro today says “borderline” Cirrhosis. I’m throwing in the towel.

Here is the pathology report of the biopsy. I know there are brilliant people on this board that may offer yet another take on this and I would very much appreciate their input.

CAT SCAN REPORT:
Technique:
Quad Phase CT of the abdomen performed without and with oral and IV contrast reviewed by 7 mm axial sections. 100cc of Isovue-300.

Findings:
Irregularity of the liver border, suggests early Cirrhosis. Small Hepatic cysts. Splenomegaly. Portal vein is patent. Subcentimeter retro peritoneal and periportal lymph nodes. 5cm right renal cyst.
Pancreas, both adrenal glands and left kidney are unremarkable. No evidence of retro peritoneal adenopathy or ascites. Gallbladder without evidence of stones.

Impression:
1. Early Cirrhosis with hepatic cysts.
2. Splenomegaly, 16 cm.
3. 5 cm right renal cyst.

BIOPSY REPORT:
Comment: Sections of this needle core biopsy of liver show partial distortion of hepatic architecture. The hepatic Architecture is partial distorted by the presence of bridging Fibrosis. Areas of small nodular or genetic change are also seen. A mild degree of macro vesicular fatty change is seen. Approximately 25% of the hepatocytes are involved in this fatty transformation. Numerous and adequate number of portal tracts are visualized. Intact bile ducts are seen. Most portal tracts are expanded and contain a chronic inflammatory cell infiltrate composed primarily of lymphocytes. This portal inflamation (inflammation) exhibits a tendency of histologic nodule and aggregate formation. Portal inflamation (inflammation) is associated with mild interface inflammatory activity. No significant lobular inflamation (inflammation) is seen. Cholestasis is not present. A collection of dilated irregular hepatic biliary channels is seen. The iron stain is negative. No alpha 1 antitryosin globules are identified.

The specimen was evaluated with the standard special stains that include a trichrome stain, a reticulin stain, and iron stain, a PAS stain, and a PAS with diastase stain.
The assessment of inflamation (inflammation) (grade) and fibrosis with paqrenchymal damage (stage) in the liver biopsy is done according to the criteria of Batts and Ludwig in: Chronic Hepatitis; An update on terminology and reporting American Journal of Surgical Pathology: 19:1409-1417 (NSY/dhc)

FINAL DIAGNOSIS: Chronic Hepatitis with the following features: Bridging Fibrosis and nodular regenerative change (Stage 3-4 of 4). Mild interface inflammatory activity (Grade 2/4). Clinical history of Hepatitis C...

Thanks,

Magnum

[Trish77]

That's a bit of a ride you're taking with your biopsy results.  I'm wondering if your treatment remains the same regardless?  If yes, here's hoping this trial is the ticket for you.  Good luck.

Trish

[Kristina538]

My GP and two specialists do the same to me with their various dx's of my biopsy.  One specialist constantly refers to 'your cirrhosis' when he speaks with me.    The diagnosis of the biopsy team gave 'mild activity and moderate fibrosis' which was tempered by the 'small size and subcapsular location of the specimen' (which my specialist said, was so fibrotic that it looked cirrhotic anyway!!').

On ultrasound my portal vein is slightly enlarged but shows normal directional blood flow and my spleen is upper limits of normal at 12cm (which, strangely, it was on an ultrasound in 1994).

I'm sure your readings are more precise that mine.  
On questioning the 'team' the specialist said to me "fibrosis IS cirrhosis" - so that's one school of thought.   His letter of recomendation to the tx team says "The actual report says that she has Stage 2 fibrosis but I suspect that this is at least Stage 3 or perhaps even early cirrhosis".   This guy treated me with mono years ago, and is a top specialist. (in saying that, tx will only be given to 3A's in New Zealand if they show progressive damage)

I think he has taken into account my general health plus my bloodwork; noticeably the reduction in platelets and increase in ALT/AST's in the last couple of years.  

This was also why I've been anxiously watching my blood work for the first few weeks of tx.

I said to my GP (PCP) "Is liver diagnosis a bit of a grey area?" - He grinned, and said, "well, yes, it can be".

I am actually glad that the specialist scared me; if he is right it is better that I (and the meds) approach things from a worst case scenario and hope for happy surprises!!!!!  In saying that, I'm also glad that I was accepted for tx - if there had been a better outcome on my biopsy, I might have tried to put it off for longer.

I'm also REALLY glad your dx looks better than your original and hope you can get on board and slay this thing asap!!!!   I'm coping with a 'somewhere between stage 2 and stage 4 and I've actually given up trying to figure it out' now that I'm on tx; but I do know that they were asking me about late stage cirrhotic symptoms.

My aged aunt had been a nurse and when she found out she had cancer, I bought her a teddy bear and a Nurse/Doctor cartoon book called "It's probably just a virus".   She called me a stupid 'bxxx' gave me a big hug and kept the bear with her until the end.   I could borrow that bear these days, and I think she's having a giggle now.  I did love her heaps and we did have the same sense of humour.    Go well Magnum; best wishes and prayers for your (our) informed choices and search for information.

[Marcia2202]

Talk about confusion! I'm sorry to hear that they are having you up and down like a yoyo. I guess the only thing to do is to start treatment as fast as possible! Have you gotten into the trial, yet? And if yes, when are you starting?

I'm rooting for you big time!!!

Marcia

[Magnum]

Thanks to both of you for your input and well wishes. The start date is supposed to be sometime next month. If I get a placebo, the doctor will put me on a double Pegasys dose. I have to be screened weekly at that point, and sign a scary paper. Dr. Gish's army is very in tune with things that may go wrong, that's why he insists on a weekly blood work regiment while under double-dosing.

The Gastro yesterday said the best hope I have right now is VX-950. He also stated that if I get a placebo, he will put me on the next clinical trial (whatever that may be). To reiterate what I've said before and what the Gastro confirmed yesterday, feeling great doesn't mean you're doing great, therefore treatment ASAP. The only real irritant is the possibility of losing my fairly new well paying entertainment job. However, health has always come first to me. I will post my experience once I start treatment....

Magnum

[Kristina538]

I know what you mean;  I just got the payrise I deserved after 10 years effort with the company and I'm on 3 months leave without pay (possible 6 months - they said they'd review my application after 3 months).
I had to sign a paper too :-( which made me feel like I'd taken the responsibility off them to look after me).  However,  my GP said that I can always object to their 'protocal' and if their protocal is wrong then they will have to jump, which made me feel a little more empowered.
So I also went to a private Gastro who has written to them stating a few extra needs and the nurse has now told me I can have extra bloods whenever I want, but I will have to pay for them. :-)  No probs!!
On a trial, however, I'm sure they'll be monitoring you closely.  And yeah, feeling great does not mean being great - my 'feeling great' has diminished over the last 10 years but I could still, intermittantly, say I was 'feeling great'....... (we must just be happy people :-).
Sorry to hear you job will be on hold. What entertaining do you do?? My brother is the Entertainment Manager at the Casino here and is a Muso (pianist - mainly jazz) - he's finally getting reasonable money after years of hard marketing to get regular gigs.
Good luck with the VX - it sounds like pretty good tx, and I guess, even if you are the placebo group,  the tx will give your liver a rest (that's what they keep saying to me because of my 50/50 only chance of SVR as a non-responder) .....  Take it easy.  Hugs :-)

[GSDgirl]

I wish you the best on the trial, BTW I love your "name" it is the nameof my favorite horse LOL.  

About the selenium.........Where I live (Pittsburgh area) there is no selenium in the soil therefore it is not in what we eat (also the hay for the horses).  My horsesget a salt block with added selenium, so it makes sense that we also need to supplement, to me anyway.

Good Luck!!

Denise

[hopeful51]

OK you can't throw in the towel... you can however towel snap someone with it be sure it is very wet when you do....

I am in the same boat as you.Everyone tells me something different and our stages of hep sound about the same.
No trials happening here (Seattle) right now that I can find anyway.
GOOD LUCK withVX if I could I'd move to Vegas (one of my favorite places) and VX TX with you I would...Go snap some hep butt for me
Hopeful51