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Alpha fetoprotein
I got my results for blood test and my afp is a little up I'm not to sure what the noraml range is they say it's 6.1 others say 8.9 mine is 7.6 so were do i draw ???
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Every lab has a different range. Yours in barely elevated and is probably due to the virus. When it means cancer it is usually in the 100's.
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Sorry kinda new to all the test, even though we have been doing this for so long, it seems like forever.  Anyhow, I picked up a copy of my husbands medical records yesterday, we need to send it with the appleal letter to his insurance company, who has now notified us that they are denieing his treatment (but that is an other long story, some of you already know).  My question is:  The doctor, in his notes, states that his AST 62, ALT 102, Hb 17.9, and HCV RNA is 3.3 million.  Are these things that he is saying are for us to worry about?  It is not clear it is just under other lab notes.  I am sorry if it seems I am going on about this, I am just so scarred of loseing my husband.  His by oppsy is 3/4, and his doctor told us he has sever cerosis of the liver on top of the Hep C.  And we can't even get the Hep C treated.  I am trying everything, you all have been so helpful. I have inquied about many of the trials they are running at many hospitals and Universities.  Still have not gotten anywhere, most of them are for non responders.  We can't find out if he is even a responder...I feel so darn helpless.  We don't qualify for any assistant programs (tryed that too).  I own a small bussiness, and they all look at the top number of what the bussiness is bringing in.  I am even trying to sell that, just to give us the money to pay for his treatment.  No luck yet.  Even if we just stoped paying all our bills it would not cover the cost of the medicine.  I have contacted ever goverment office I can think of, including emails to the President, his wife, Vice President and his wife.  I just feel like if this appeal is also dined I will have run out of opptions.  It is killing me, not being able to get my husband any help.  Any, and I mean ANY advise anyone has will be so apprisated.  (Sorry about spelling, I can't even think at this point}
Thank you LovingWife
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thanks, I'm not good at reading all these test
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I'm writing on giddy's computer but I am whoaisme...another loving wife....your husband's numbers are high but not alarming..they are where a lot of hep c patients are. You would know if your husband is a responder is he has tried to treat Hep c before. If he hasn't you should look for a study that is looking for naive patients (meaning they have never treated before). Keep trying things will come up....good luck, Su
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87972 tn?1322664839
" My question is: The doctor, in his notes, states that his AST 62, ALT 102, Hb 17.9, and HCV RNA is 3.3 million".

Hi there, Lovingwife; Just to help you put things in perspective, my basline labs were -

AST - 109
ALT - 275
Hb  - 17.4
HCV RNA - 75,600

The ALT/AST numbers are indeed elevated, but consistant with Hep C infection. These numbers generally indicate how much damage is currently being done to the liver. As you can see, my numbers were much higher, and I don't have any plans to die in the near future. His Hb of 17.9 is ideal for treatment, as Tx tends to lower this. An Hb of 17.9 gives him an excellent cushion for possible anemia due to Tx. The HCV RNA of 3.3 million is actually a moderate number, with some patients at 55+ million. A high viral load is considered almost insignificant by many doctors. I'm so sorry to hear of your difficulties, but continue to perservere, your efforts will eventually pay off.
Best wishes to you both, Bill
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87972 tn?1322664839
Hi there,  jmjm,

My interpretation of the grade/stage scale has been that fibrosis stage 3/4 indicated a high stage 3, low stage 4 condition. I realize that there are many systems in place, and that this issue is confusing, not only to doctors, but also certainly to patients as well. My GI doc told me that as stage 3/4, I should consider myself stage 3, with indication of early nodular activity suggesting possible cirrhotic activity.

Using the METAVIR system, which utilizes the following increments to describe fibrosis,

Stage 0
Stage 1
Stage 2
Stage 3
Stage 4

We show a total of 5 possible stages, so I conclude that my doctor is correct in his interpretation. If you get a moment, take a look at the following link:

http://www.natap.org/2003/feb/grading.pdf#search='knodell%20scale'

It gives a good look at the different systems in place, and probably leaves us with more questions than answers. Your comments will be greatly appreciated, my friend, this confusion may just be due in part to my high-riba regime, LOL.

Best,

Bill
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87972 tn?1322664839
Lovingwife,
I just got off the phone (2:45 pm pacific time) with Luara Lester, recruting nurse with the IDEAL study here in Sacramento. She told me that the IDEAL study is still activly screening and recruting patients here as well as nation-wide. This study is for treatment-naive, genotype 1 patients. (Patients who have not previously treated for Hep C). If your husband is genotype 1, please contact the study. It is sponsered by Schering-Plough, the makers of Pegintron. I don't have the address available, just search - IDEAL study - they have a study site locator by zip code.
Hope this helps,

Bill
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Thank you all once again.  I am looking into all of this that has been posted.  I will look in to the ideal study, however, my husband is type 2.  I also just want to say that I really don't know what I would have done without your help today.  I was just feeling like I was lossing it today.  The hep C is not the scarry part, but without it being treated the cerosis will only worsen.  That is what scares me.  I know the numbers are in the norm for a hep c-er, but the seperate dx of cerosis will not be addressed till this is under control.  Again Thank all of you.
LW
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Thank you so much for your help.  I went to everyone of the sights you gave.  I think I found something I can use.  I am calling tomorrow, I will let you know how it turns out.
Thanks again
LW
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Its me whoaisme, and I hate to disagree but--- your alt and ast are not indicative of how much damage is being done to your liver..the numbers often fluctuate. They generally only indicate active liver disease.
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i just can't understand why you can't get anywhere with the insurance company...i would be going crazy with them...he has cirhosis and is a 3/4. this is very bad. with out treatment he will die from this. (not in the near future but it will be down the road)

what exactly are they saying to you? why are they not covering the meds. they are pretty standard meds these days. have you gotton the dr to contact the insurance company yet? they can speak thier language...what did they uncover? you need to be really stern with these people and complain until they listen. the squeeky wheel gets the grease.

the other thing to be sure to check into the assistance programs that the drug companies have concerning thier products...like call the pegasys company.

Roach or Scherring and Plaugh (name ? sp).

there are others here who can give you more advice i'm sure. there are several here who had to fight with thier companies to get them to pay...i hope they will help you further.

please keep us informed on this we really care about you guys. don't ever feel you are bothersome by asking questions and getting help. we are here for each other. many have been in your shoes and have recieved the help they need so hang in there and be persistant and most important don't give up. there is help for him it's just a matter of finding it.

don't let the drs office get out of it either. pursue them until they help you figure this out... it is a life or death issue and he desearves treatment or he will die. they can't keep that from you...tell the insurance company they will be paying for a transplant and many multiple hospitalazations and proceedures as his liver begins to fail, if they don't pay for this...talk about expensive!

you should also try some other hepc websites to get info from other sources. some here will see this and suggest some to contact. here are some links to look into.

http://www.janis7hepc.com/Ins%20&%20Financial%20Aid.htm


Patient Assistance Programs

Americas Pharmaceutical companies have a long-standing tradition of providing prescription medicines free of charge to physicians whose patients might not otherwise have access to necessary medicines. Pharmaceutical companies operate these programs, commonly referred to as patient assistance programs, voluntarily.

Many drug manufacturers offer patient assistance programs which can greatly decrease or entirely eliminate the costs of many medications. The requirements for program eligibility vary. Some programs may be applied for directly by the patient, other program applications must be intiated by the healthcare provider (phsycian, pharmacist or agency).

Below are a few telephone numbers you can call to ask questions and URLS to visit for more information:

Product
Name Hepatitis
Type Parent
Company Assistance Program
Contact Information

Infergen
(interferon alfacon-1) Hepatitis C InterMune 888-696-8036
Intron A
(interferon alfa-2b) Hepatitis B
Hepatitis C Schering Commitment to Care
800-521-7157
Rebetron
(interferon alfa-2b and ribavirin) Hepatitis C Schering Commitment to Care
800-521-7157
PEG-Intron
(peginterferon alfa-2b) Hepatitis C Schering Commitment to Care
800-521-7157
PEG-Intron / Rebetol Combination
(peginterferon alfa-2b + ribavirin) Hepatitis C Schering Commitment to Care
800-521-7157
Roferon A
(interferon alfa-2a) Hepatitis C Roche 877-757-6243, option 4
Pegasys
(peginterferon alfa-2a) Hepatitis C Roche Pegassist
877-734-2797
Pegasys / Copegus Combination
(peginterferon alfa-2a + ribavirin)  Hepatitis C Roche Pegassist
877-734-2797
Epivir HBV
(lamuvidine) Hepatitis B
Hepatitis D GlaxoSmithKline Glaxo Wellcome
Patient Assistance
800-722-9294
Hepsera
(adefovir dipivoxil) Hepatitis B Gilead 800-226-2056


Medicare - Prescription Drug Assistance Programs
http://www.medicare.gov/Prescription/Home.asp

Pharmaceutical Research and Manufacturers of America
2001-2002 Directory of Prescription Drug Patient Assistance Programs
http://www.phrma.org/

NAMI-NYC METRO - Resources
http://naminyc.nami.org/pharma_nos.htm

NeedyMeds.com
http://needymeds.com/

Northeastern Pennsylvania Transplant Support Group Inc. (NEPATSG) list of
Pharmaceutical Manufacturer Financial Assistance Programs
http://www.nepatsg.org/finance.htm

To receive a copy of Pharmaceutical Research and Manufacturers of America's
Directory of Prescription Drug Patient Assistance Programs, contact 1-800-835-3410

Hepatitis Foundation



HERE ARE SOME THINGS I HAD ON HAND:

http://www.hepatitisneighborhood.com/content/message_boards_and_chat/chat_2292.aspx?randStr=

http://rxhope.com/

http://hepatitisdoctor.com/

http://www.cdc.gov/ncidod/diseases/hepatitis/c/index.htm

http://hepcproject.typepad.com/hep_c_project/2004/05/the_real_ideal_.html

http://www.centerwatch.com/

http://www.acurian.com/patient/nws_index.jsp

http://medicine.iupui.edu/ctp/trials/HepC.htm

http://www.clinicaltrials.gov/

http://www.idealstudy.com/


PERHAPS THERE IS SOMETHING IN THESE YOU CAN USE OR CAN EMAIL FOR ASSISTANCE. I PRAY FOR SUCCESS FOR YOU GUYS...LET US KNOW...

SANDI
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Bill,

It is confusing. My "3/4" was based on the Scheuer Classification. I also have seen a stage "2/4" which seems to support the idea that the first number is the stage and the second number is the total  numbre stages. But maybe it changes from system to system and from pathologist to pathologist. Or, maybe your GI is wrong as I've also been given two interpretations on what "3/4" means.

Based on this conversation, I think what I'll do is call the pathologist who wrote my report and ask  what a "3/4" means to him. You might try the same and contact the pathologist who looked at your slides. Why guess?

The other thing is to ask for the the actual pathology report and see what it says. Mine says "fibrosis with focal interportal bridging" which I understand is characteristic of stage 3.

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I'm also a "3/4".

But unless your doctor is using another system, "3/4" means he's stage 3 out of a possible 4 stages. This is not cirrhosis. Stage 4 would be cirrhosis. Your husband may be years away from cirrhosis or may never get it at all.

This is not to say he shouldn't be treated right away as a 3/4, but
there's no reason to make him sicker than he really is.  

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THE ABOVE POST IS TO YOU. I HOPE YOU WILL GET OTHER FOLKS RESPONDING TO YOUR QUESTION TOO.
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this is from loving's post.

<"his doctor told us he has sever cerosis of the liver on top of the Hep C.>


loving wife said he had cirhosis so i went on that and figured it was a late stage 3, early 4.

if his dr said he had "severe cirhosis", then i would believe him until she finds out something different. i've always looked at stage 3 as right at the door of cirhosis myself anyway.

but that was'nt the point anyway...the point is he has no time to waist with this bogus insurance co giving them the run around as his liver dies. the insurance company needs to understand that his life is at stake, which it is. that was my only point there.
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87972 tn?1322664839
Sounds like a plan, bud - I'm on it. I received a copy of the pathology report from my GI doc indicating grade and stage, but the narrative section of the report was mysteriously truncated. This finally gives me the push to clear things up.
Thanks, Bill.
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87972 tn?1322664839
After re-reading my post, and particularly in this context, I bow to your wisdom. Can't believe my fingers said that - certainly wasn't my mouth! Thanks for keeping me honest. By the way, you and giddy have the best monikers I've ever seen. About bust out laughing every time I try to tie faces to names....That's definitely intended as a complement, by the way...  Bill
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interesting how the many bx read.  mine stated the stage and after that it stated grades, they never used the 2/4 thing.

viral load does not indicate how much damage there is at present and  a low load does not mean that severe damage will not occur in the future.
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Good for you on getting right on it!

It bears out what has been a lingering suspicion that a lack of standardization on biopsy staging nomenclature has people confused. The scary part is that a lot of these people are the doctors themselves. LOL.

But like you say, you really have to get hold of the pathology report, and then query the pathologist if there is any question at all regarding staging, etc.

In my case, the original biopsy report gave me a "3/4". Like yourself, I always assumed it meant between stage "3" and "4" until I had the slide looked at by a second pathologist.

The second pathologist graded it as "2/4" and told me she meant stage 2 out of a possible 4 stages. However, on further questioning, it seems the second pathologist did not have the benefit of the trichrome stained slide to look at. Meaning -- by her own admission -- her report may be offering me a false sense of optimism. The actual description from the first biopsy was "trichrome stain demonstrates moderate to focally marked portal-periportal fibrosis with focal interportal briding."

So...I'm  currently in the process of tracking down the original stained slides to present to the second pathologist for review. Hopefully, she won't see any "focal interportal briding" but I'm not holding my breath. LOL.  After that, I'll speak to both pathologists and get some closure here. In the end, it may be academic, since the biopsy was done three years ago and I'm in my 17th week of treatment. That said, I still believe we should have the most accurate information available to us in order to make any treatment decisions.

So..it may be a little while till I report back.  Especially since I apparently staged my Procrit down too agressively and seem to be flirting again with my nasty ex-girlfriend, MS Anemia. Or maybe it's just this week's shot that's pulling me down. Such a fun time. LOL.
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87972 tn?1322664839
Jmjm -
Just retuned from the hospital with information regarding biopsy/pathology. The pathologist informed me that the system they use is loosely based on the Knodell Histological Activity Index.

When I inquired how I should interpret fibrosis stage 3-4, he said that it would indicate stage three- and- a- half. (3.5), and should not be confused with stage 3 of 4 possible stages.

By the way, jmjm: I have also seen reports that indicate fibrosis stage 2-4, which would certainly support your position. When asked, he said that he had never seen a score like that, and would have to refer the pt. back to the original pathologist that wrote report.

He freely admitted the confusion involved in interpretation, not only among clinical doctors, but also within the pathologists themselves. He suggested regional differences, as well as individual laboratory preference.

The take-home message I walked away with is: If ya gotta know, best do as we are doing, and check with the original writing pathologist.....Amazing, eh?

Here
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I am trying, once again, to write this.  If my computer will cooperate.  There are no true experts.  I've heard on this board so many differences of opinions on things, depending on whatever their own personal doctors told them.  Even the doctors don't know everything about Hep C.  If they did, then we'd all be cured.  Keep on trying to get the help from either your insurance company, or through some of the other resources that have been listed here.  Have faith, trust in God.  Take care.

Susan
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87972 tn?1322664839
Make sure you keep that old hag Ms Anemia busy over at your place, my friend. Do whatever it takes, eh? I'm still happily clipping along at Ribaviron X 1800 mg/day, I got a feeling she just might get a big-time crush on me.....Keep up the good work,

Bill
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Ah, yes the 1800 riba man. LOL.

How's it going? Are you on Procrit yet? I've toyed with the idea of going back to a higher dose myself (I was at 2000 at one time) but first I have to feel a little better.

So as not to further hijack this thread, you can email me at ***@**** if you like.
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