Biopsy Results Stage 4, Grade 4 what does it mean?

[Debbeav]

My doctor called me last week and told me my biopsy results were Grade 4, stage 4 and scared me to death.  My last biopsy was Grade 2-3, stage 2 in 2002.  I have done 3 different treatments, the last being 2002, the combination therapy.  I'm genotype 1 and was diagnosed in 1983.  Dr. is checking on trials and said he wants to try me at a low dose of interferon daily.  My appt. is not for two weeks so I have been left hanging.  I have never responsed to treatment before by the way in the past.  Any suggestions or insights????  
Thanks, I am a nervous wreck

[foreverfriends1]

My doctor is a GP. I have had a scan of abdomen. Tests came back to day saying Blood still elevated but "Static" - other blood test shows Antinuclear Positive. I have asked gP should I see a person who specialises in liver. He now says for me to see a Rheumatologist as he feels I may have Lupus SLE. GammaGT is just 134 now - I have Pre Op in less than a week so I will tell the anaethetist. ((Thanks)) you make more sense than my doctor:)

[cuteus]

have your dr done the hepatitis viral panel, to rule out viral hepatitis? how about autoimmune hepatitis?  IS your dr a hematologist, maybe you should consult with one and a hepatologist also(for the liver), you need better answers, your situation sounds very scary. I would consult with specialists in a large research hospital, it does sound like a second and third opinions are needed.
please keep in touch

[foreverfriends1]

Thanks for your comments Cuteous. I have tried posting further up - BUT, still no answers. Am so weak, it has taken me quite a while to find the posts.YOU have a good sense of humor too! donna

[cuteus]

try cutting and pasting your posts in the recent threads, way up on the top of the page, you might get more folks reading them. Hardly anyone lurks down here...I do...I am one of the bottom feeders, though.
best to you

[foreverfriends1]

12 years ago I worked 24hrs a day. Severe pain in left leg had me crying. I could barely put any weight on my foot. Next blood tests were taken and had shown Red Blood Cells were clumped together & fighting for Oxygen. I was diagnosed with CFS/FMS. Becoming weak & exhausted I never believed in this diagnosis. I got worse and took pain relief which was in the form of strong painkillers. 3 months ago I went back to my doctor & after reading your threads asked his to do a "blood liver function test" He knows I am afraid of needles - but took one to appease me - so to speak. I am desperately worried. Test came back with Raised GammaGT also other Liver Enzymes are not good. Each week lots of bloods are taken - doctor keeps getting GammaGT & other tests elevated. 3 months later Doc. is now concerned for my liver. I possibly had this illnes some 10 years ago. Feeling as if there is no Oxygen in the room - was not in my mind. I am weak, rambling & extremely worried. I went for more bloods on 7th September - doctor then told me He could not understand why liver enzymes are raised and he is now concerned about my liver. I DO NOT drink alchohol. He keeps asking me. I have not taken alchohol for over 25yrs. Surgery for Hysterectomy will be soon. I already feel my system is poisoned. Surely, Anaesthetic will poison my system further? I know there are many worse off than me. If somebody could please take the time to explain it would be appreciated. I am past exhausted & feel my doctor may have left this to late to be treated. I have not taken Paracetamol for 3 months. Should this drug not now be out of my system? Ankles are not as swollen - abdomen is extremely swollen. I do NOT like to trouble anyone. My doctor was angry when I told him I was going to try a liver cleansing treatment from the USA. I do not know what Hepatituc C is - however, gut intuition had me ask for liver function test & when asking doctor could I have AIDS He replied - definitely NOT. He does not know whar is wrong now. Any help in understanding this would be apreciated. Thanks in advance donna

[foreverfriends1]

p.s Can I add other symptoms are bruising, painful lumps under skin on legs, ulcers & bleeding in mouth. Muscle spasm in neck and legs. My left ankle has broken twice. I do have some kind of auto immune. I am 46ys old and have not felt wellfor over 12yrs. This liver could have been damaged some years ago as I was given too much medication. Solpadol is for "severe Pain" and I had been taking that for over 8 years - each tablet Eff. contains Paracetamol 500mg plus 30mg Codeine. 8-10 a day over this period will possibly not have helped my situation. Would you have surgery with bad liver function tests? If I am on the wrong page I apologise in advance.

[NYgirl]

I am very glad to have found this forum!  :)

I was diagnosed Grade 2 Stage 2 last month and start on the treatments probably in the next week (as soon as my insurance company gets into gear).

I've been really fearful about every single aspect of this whole HCV thing and finding you all in here is a God send.

I will pray for all of you as I pray for me (which is pretty much constant now).

Thanks for being here!

[Debbeav]

Hey everyone, I just want to thank you for your support and your comments.  My appt. is this Wednesday and so I need your expertise to help me ask questions.  Is it o.k. to take a low dose of interferon everyday, not combination therapy, like I said I can't handle that.  I get really, really sick and my white blood cell count dives even more than my normal low.  Has anyone done daily treatment???  The other thing it can anyone please tell me what your physical symptoms  of cirrhosis are?  I am sick to my stomack, I sleep 12 hours a day now are there because of cirrhosis?  I have lost weight about 10 lbs in the last year as well.  My mental attitude is great though, I can help any of you with having hope and stuff like that.  I am not afraid, I have been through 3 and one half treatments and during that time I have been so blessed with the things that have happened in my life that I never thought I would live to see when I was diagnosed in 1983.
Deb

[tulsatime]

Hi, I don't post much but read alot. Your question touched me cause I know how scared you must be. I too have stage 4, cirhosis. I have hep c type 2 stage 4 grade 1. my liver and spleen was very enlarged and blood platelets was in the 70's, when I started treatment. I have had it for 20 to 25 years. And just found out last year I had it. So all these years I drank on weekends. Anyway, what I wanted to say was Good luck to you and don't ever give up. I was lucky to respond and I take my last shot next week, so far I am clear. I will always have cirhosis, and need to keep an eye on it. Good luck to you and God bless!!!

[HCA]

Just to clarify,Knodell is cirrohsis at stage 4-It's Ishak that has 6 stages of measurement.
I am stage 3 Ishak-occasional bi-portal bridging,stage 1 (mild) inflammation

[PasoPerson]

I read this board for the past three months, just waiting for my treatment to start.  I noticed that everyone here seems to have been graded on a 1-4 scale.  HOWEVER, my biopsy was graded on the Knodell scale, which is 1-6.  (I am a Grade 5 on that scale.)  

Please re-read your biopsy report and see what scale you were graded on.  Perhaps it is not as severe as cirrhosis.

[rearfang]

Great news!!!
Lauren

[genedog]

Great news you are there svr for life

[fresnoborn]

hi i have noticed on this site that you seem to know quit a bit so i am asking you if you caninterpret this to me in plain english. it's the results of an x-ray i had done recently because of my hurting, swollen hip.  here goes:
FINDINGS: EXAM IS COMPARED TO 6/6/05 AP PELVIS DEMONSTRATING SIMILAR SLIGHT IRREGULARITY OF THE SUPERIOR LATERAL ACETABULAR(what's a lateral acetabular?) ASPECT TO SUGGEST POSSIBLY A TINY COMPACT BONE ISLAND OR LOOSE BODY OVER THE SUPERIOR LATERAL HIP JOINT.(what?) AP AND FROG CONED VIEWS SHOW MILD SPURRING OF THE INFERIOR FEMORAL HEAD,(do you know where the femoral head is?) ALMOST CIRCUMFERENTIAL HIP JOINT NARROWING IN RETROSPECT ON THE FROG(whats frog?)VIEW. MILD ILEAL WHISKERING (what's that?) IS NOTED INCIDENTALLY ON THE AP AND FROG PROJECTIONS TO SUGGEST RHEUMATIOD VARIANT ARTHRITIS FOR INSTANCE AND THERE IS NO ACUTE FRACTURE OR DISLOCATION SEEN.MILD OSTEOPENIA IS NOTED.(what's that?)NO ABNORMAL SOFT TISSUE CALCIFICATIONS ARE NOTED DISTANT FROM THE HIP JOINT.
IMPRESSION: MILD SPURRING FEMORAL (what's a femoral?) HEAD ASSOCIATED WITH LACK OF SUPERIOR HIP JOINT NARROWING TYPICAL OF OSTEOARTHRITIS RATHER SUSPECT RHEUMATIOD ARTHRITIS OR RHEUMATIOD VARIANT, WITH MILD OSTEOPENIA.
can you help me with this one?

[jmjm530]

The diagonosis is suggestive of osteoarthritis with mild bone loss (osteopenia). Like cquest says, it doesn't sound too serious but we don't have any doctors here and mostly are familiar with hepatitis c treatment issues. Again, as suggested you could look up each term in a medical dictionary online but that will still only give you the "what" and not the "what does it mean."

If you don't get the answers you're looking for here, try going to the main page of this site http://www.medhelp.org/
and click on "arthritis" (bar on left) you can ask a doctor the same question for a very small fee.

Good luck and hopefully it's simply one of those normal things that happen to all of us as we age.

-- Jim

[PasoPerson]

Sorry, I meant I am a Grade 5 on Knodell scale, not stage 5.

[Debbeav]

Thanks for praying for me.  You know the last time I was treated they told me that it was probably the cause for my lupus diagnosis and also I now have a permanent low white blood cell count. I would be taking nupegen or however you spell it along with the interferon.   Like I said I have been through 3 and 1/2 treatments, it does do some damage.  I don't know if my body can take anymore.  My appt. is Sept. 7.  My ALT and AST went down to around 100's the first few months then rebound to around the 3-400 range which is what they are now.  I am so glad to have found this forum.  It really helps.  Someone else asked what scale they used for the biopsy's and the last 3 just say stage 1-4 and grade - 1-4 in their grading.  Like when I was grade 2 it says grade 2 of 4.  So that must be their scale range.

[Forseegood]

Sorry you had some bad news, but as someone said, it's certainly not as bad as some have had. All I can tell you is that I know of some people who were 3 4 even 5 time non-responders and relapsers that have been helped by low-dose treatments and/or infergen. One five time non-responder I know who is a manager at one of the other boards has responded to infergen. Of course there are all the other things, taking excellent care of yourself, diet considerations, etc. Hope you find something that works for you. Good luck to you.

[cquest]

I will check the medical dictionary when I get to work but off hand I know 'femoral' is your leg bone and 'femoral head' is the end where it fits into your hip socket. Any word with 'osteo' in it relates to bone (as in osteoporosis: poris bone). 'Ileal' is also a part of the bone, whiskering probably means there are little fragments that looks like whiskers...the 'island' sounds like you have some sort of bone fragment floating around...All in all, if you don't see words like 'severe' 'extensive' or 'extreme' etc, you are probably doing ok, it could be worse...Why don't type in those words and do a search on the web?
Cin

[Debbeav]

Hi and thanks for all of your comments.  I feel so much better having some people to talk to who are in my circumstances.  The past treatments I did were Intron A monotherapy and then Peg-Intron and then the last was the Rebetron Combination therapy.  My ALT and AST's never normalized but went down for a few months and then rebounded back up as well as my viral load.  I had such severe side effects with the last two therapys that they stopped me after 5 months due to white blood cell counts and weight loss and depression.  How do I know if it is compensated or decomensated cirrhosis?  Can anyone tell me about staging of cirrhosis and the time periods involved generally with advancing from one stage to another?  Thanks for giving me a deep breath -whew!

[HepCat]

Well, stage 4 means cirrhosis and grade 4 means the inflammation is pretty high which may suggest a faster rate of progression of liver damage.  Your doctor wants to see if he can slow down progression with "maintenance dosage" because assuming you have compensated cirrhosis (liver still works ok) he wants to keep it that way and not progress to decompensated cirrhosis (liver not doing its job to some extent and on) which is usually the point where liver transplant is indicated. They would normally consider maintenance dosage where regular tx has proven not to work or cannot be tolerated. It seems what some people are questioning is whether you have really taken convential treatment (pegalated interferon with ribavirin and/or daily infergen with riba) as far as it could go and whether your biopsy is accurate.  I was surprised at the difference in JM's results.  I also thought maintenance dosing is usually done with a weekly dose of pegalated interferon and not daily of what? But you weren't very specific.

Studies of maintenance dosing have shown it can slow the progression so that would be something to consider if trying regular treatment is not an option but you can tolerate a maintenance dose.  

I understand how you feel because that is truly a bad diagnosis but not the worst it could be.  Don't give up hope that maintenance dosing sounds like a good option for now.  If you can supply a few details of your past treatment people could better evaluate your situation.  Some doctors are alot better than others in treating Hepatitis C.

Take care.  

[DRAGON SLAYER]

GREAT NEWS.....CONGRATS. PLS REJOICE. Ben

[Tallblonde]

Congratulations Monte on your wonderful news.  I'm really happy for you!

Susan

[stc1993]

Sorry for butting in on your question but it was full for today.  I got my 48 weeks results today. undetectable, he said all my liver functions were normal & all my blood work was good. he seem to think I have a good chance of being "cured" his word.  Thanks everyone its been a long year. over with in a flash.

Monte