Aa
hep c
hi again
thanks for the advice from everyone, you all seem to know a lot about this disease, i know nothing, the itching is driving me crazy, i dont even know what causes it,i dont think i will find a doc that wil treat me i have been to two gastros the fisrt one refused and my platlets were 120 back then two years ago, the second one well he did try like i said i managed to get in to shots of peg but that was it as my norm doc started having heart attack at the rate my blood counts were dropping, so they ended up stopping treatment, so does anyone know how you know you are in the end stage liver disease, or what symptoms to look for as they wont even give me biopsy to see if i have liver damage or cirrohis
thanks for the advice from everyone, you all seem to know a lot about this disease, i know nothing, the itching is driving me crazy, i dont even know what causes it,i dont think i will find a doc that wil treat me i have been to two gastros the fisrt one refused and my platlets were 120 back then two years ago, the second one well he did try like i said i managed to get in to shots of peg but that was it as my norm doc started having heart attack at the rate my blood counts were dropping, so they ended up stopping treatment, so does anyone know how you know you are in the end stage liver disease, or what symptoms to look for as they wont even give me biopsy to see if i have liver damage or cirrohis
Yes, no fibrosis. As for your nurse, I wouldn't listen to he/she that much. Nurses pass on hearsay. I want all information straight from the dr's mouth. My GI pulls up my scans and bx results on her PC so I can see for myelf. We then discuss the findings.
YEP REV, you are so right...go with your drs suggestions...you're a man who knows how to deal with these issues and i surely respect your attack attitude!!! i can always relate to your attitude of keeping an eye on these drs and our own situations and staying on top of it...it's people like you who have taught me that. and that attitude get's the best treatment results...no one cares about our own health as we ourselves do...so it sure makes sence to monitor our own health issues and not rely souly on these drs and nurses to get what we need...
a fellow soldier, sandi
a fellow soldier, sandi
I was wondering why my practice wanted to check for HCC even though you get SVR and had no fibrosis, I guess this is why.
yes rev, sad to say... i have read that hepc alone is a danger for liver cancer even without the fibrosis...sux huh?
the good news is that tx can lower that risk and so can keeping your alt down...
but obviously the risk for hcc from hepc is multiplied once we reach bridging fibrosis and cirhosis...this is like having 2 reasons to watch out for liver cancer...
the good news is that tx can lower that risk and so can keeping your alt down...
but obviously the risk for hcc from hepc is multiplied once we reach bridging fibrosis and cirhosis...this is like having 2 reasons to watch out for liver cancer...
G'Day Lucky one,
HCC = Hepatocellular carcinoma
For a definition go here
http://www.nlm.nih.gov/medlineplus/ency/article/000280.htm
Again on your low platelets, get an AT + APTT blood test to determine your coagulation rate.
HCC = Hepatocellular carcinoma
For a definition go here
http://www.nlm.nih.gov/medlineplus/ency/article/000280.htm
Again on your low platelets, get an AT + APTT blood test to determine your coagulation rate.
Thank you for the kind words. My immune system is not quite where it should be to stop thinking my new liver is a foreign agent. Until it does it won't stop trying to attack it. I will be changing immunosupressant meds 2-3 months from now. I have other health issues, minor, to overcome before I can make the switch. If the new med works then in 6-8 months my docs and I will discuss tx. Its the old be sure you take care of one problem before trying to conquer another or you might end up with up humongous untreatable multiple problems. Scary thought.
This is great forum and whatever I can do to help, I will.
This is great forum and whatever I can do to help, I will.
hi what do the intials hcc stand for, sorry for being nieve, but im in australia and dont know nothing about this disease let alone abbreviations.'by the way i looked up the drug neumega for boosting my platlets and got an email back from the drug company and they told me it is not in australia, now u know why i call myself the lucky one, lol, everyt ime i think im getting close to go on hep treatment, theres another blow waiting around the corner, i got an appointment with my gastro again that i havent seen for a year , i see him on the 20th of this month, i dont think he is going to start me on treatment as my platlets are only 50 and as soon as i start they will drop
anyway heres hoping
anyway heres hoping
thank you kanzou, i have suspected that is the case with biopsies that it depends on the area of the sample they take...for the most part it is probably fairly reliable but for cancer it could miss the whole lump obviously... i'm not sure how evenly spread fibrosis damage is either but i would think it would be mostly evenly spread throughout the liver or how could they even trust the sample? i would love to understand more about it on a cellular level. my dr seems to think that our biopsy grade and stage could depend on who's analyzing the sample, if they get it right or not...sometimes i guess they can underestimate the grade and stage...that's comforting to think about...not!
well i'll look forward to hearing more from you...you really have alot of experience with things...it's nice to hear from you.
i pray your new liver cooperates and that your future with it is bright...but if i were you i'd hurry and get on treatment if allowed...i know the meds stink but the possible outcome stinks even more...and i thought i heard that hep spreads faster in the transplant then a normal liver...i hope not for all our sakes...but i would be freaking out about it...but i freak out about everything though...
my best to you kanzou ~sandi
well i'll look forward to hearing more from you...you really have alot of experience with things...it's nice to hear from you.
i pray your new liver cooperates and that your future with it is bright...but if i were you i'd hurry and get on treatment if allowed...i know the meds stink but the possible outcome stinks even more...and i thought i heard that hep spreads faster in the transplant then a normal liver...i hope not for all our sakes...but i would be freaking out about it...but i freak out about everything though...
my best to you kanzou ~sandi
The bx did not indicate HCC. The explanation given to me was the lession was sitting next to the portal vein, high upper left lobe. The liver sample is taken thru the right lower ribs, 2 & 3. What they ended up getting was healthy tissue.
Once they see multiple colonies they can assume HCC or if the lesion is close to the area where they get the sample from, the sample will tell the story, basically becasue the liver tissue around and near the lesion is dying or dead.
Are all bx results the same? No, not mine. Nine days after transplant I had a rejection. They performed a bx. They came back the two days later and did a triple - three passes. Were the results the same? No. The last two samples were, but not the first two. Go figure.
No fibrosis, no scaring. AFP non-maternal was sky rockety high, 2238.9 ng/ml. Test range is 0.0-15.0. AFP testing is another story too. Be sure they test AFP non-maternal not straight AFP. One looks for cancer cells and the other to test pregnant women for the risk of carry a down syndrome baby. Always ask the lab tech who is drawing your blood if they're drawing AFP non-maternal. Several times I have caught the mistake and I'm a guy!
Question everything and question it again. People make mistakes and doctors are people too.
Once they see multiple colonies they can assume HCC or if the lesion is close to the area where they get the sample from, the sample will tell the story, basically becasue the liver tissue around and near the lesion is dying or dead.
Are all bx results the same? No, not mine. Nine days after transplant I had a rejection. They performed a bx. They came back the two days later and did a triple - three passes. Were the results the same? No. The last two samples were, but not the first two. Go figure.
No fibrosis, no scaring. AFP non-maternal was sky rockety high, 2238.9 ng/ml. Test range is 0.0-15.0. AFP testing is another story too. Be sure they test AFP non-maternal not straight AFP. One looks for cancer cells and the other to test pregnant women for the risk of carry a down syndrome baby. Always ask the lab tech who is drawing your blood if they're drawing AFP non-maternal. Several times I have caught the mistake and I'm a guy!
Question everything and question it again. People make mistakes and doctors are people too.
oh wow... you have been through it...i'm so sorry you had to go through that...thank you for the great advise on getting the contrast fluids with the ct scan...i had one in january and it just shows fatty liver but i don't think they made me drink the fluid...this one was for a car accident i was in. the ct scan before was for high AFP...it had shows no lesions and it definately was with the contrast solution...
for you, are you saying that the biopsies don't always show hcc...this makes sence, since for most people the tumors are not all over the liver...(i think that's what you meant)
...you said your biopsy was normal??? does this mean you got the cancer and did not have any other significant fibrosis to your liver...like forexample stage 0 fibrosis? i have heard that can happen just with the mere presence of hepc our chances of hcc are greater...
and it really stinks that the drs didn't give you a contrast solution before that...was your AFP high too?
well thanks for the info and warning it is so nice of you to mention that...it sounds very important...we really need to look out for those signs too...some of them are just like treatment sides...
i hope your new liver is doing well and ajusting...and i pray you can get rid of that hepc soon...there are some herbal knowledgable people here too hope they come along...
here's something interesting i think that looks promising without killing us...
http://www.hepatitisneighborhood.com/content/in_the_news/archive_2329.aspx
for you, are you saying that the biopsies don't always show hcc...this makes sence, since for most people the tumors are not all over the liver...(i think that's what you meant)
...you said your biopsy was normal??? does this mean you got the cancer and did not have any other significant fibrosis to your liver...like forexample stage 0 fibrosis? i have heard that can happen just with the mere presence of hepc our chances of hcc are greater...
and it really stinks that the drs didn't give you a contrast solution before that...was your AFP high too?
well thanks for the info and warning it is so nice of you to mention that...it sounds very important...we really need to look out for those signs too...some of them are just like treatment sides...
i hope your new liver is doing well and ajusting...and i pray you can get rid of that hepc soon...there are some herbal knowledgable people here too hope they come along...
here's something interesting i think that looks promising without killing us...
http://www.hepatitisneighborhood.com/content/in_the_news/archive_2329.aspx
Thanks, and thanks for asking...as for the HCC, yes I battled it from 03 to 04 and had my liver removed. Its very important to the readers of this forum when they get a ct scan, I urge them to always get one with contrast. A standard scan misses a lesion (tumor) as it did me for 2 years. If it was detected earlier, I think the RFA (radio frequency ablation) could have prevented my transplant. I'll never know. And no, a bx does not detect this. Mine always came back normal with a slight swelling. They blamed the swelling on "possibly from the HCV."
Poor diag of the bx? Two different hospitals, quite possible.
When my liver was removed the lesion was .2cm (point 2) away from my portal vein. Liver tumors are single rulers, that is, they want to from their own colonies. I was weeks away from the colony reaching my portal vein and devastating my body.
For those who may feel they have HCC or want to rule it out, here are the major symptoms;
Frequent nite sweats
Unusual loss of hair (shower drain cover covered)
Extreme fatigue - if you stop moving you doze off
Severe nite itching - only at night, max sleep is 45 minutes or so. Lotions help but not more than 45 minutes, same as water. Fine during the day, no itching.
No fever, slight jaundice, no ascites, everything else fine and dandy.
MY VL pre transplant = 845,547 (dropped 500,000 via two year herb program, originally 1.3 mil)
My VL post transplant = 278,457 a drop of 567,090 copies
Am I on tx? No, not anytime soon. I'm still investigating the many trials.
Poor diag of the bx? Two different hospitals, quite possible.
When my liver was removed the lesion was .2cm (point 2) away from my portal vein. Liver tumors are single rulers, that is, they want to from their own colonies. I was weeks away from the colony reaching my portal vein and devastating my body.
For those who may feel they have HCC or want to rule it out, here are the major symptoms;
Frequent nite sweats
Unusual loss of hair (shower drain cover covered)
Extreme fatigue - if you stop moving you doze off
Severe nite itching - only at night, max sleep is 45 minutes or so. Lotions help but not more than 45 minutes, same as water. Fine during the day, no itching.
No fever, slight jaundice, no ascites, everything else fine and dandy.
MY VL pre transplant = 845,547 (dropped 500,000 via two year herb program, originally 1.3 mil)
My VL post transplant = 278,457 a drop of 567,090 copies
Am I on tx? No, not anytime soon. I'm still investigating the many trials.
hi and welcome kanzoo you sound like you have alot of experience with this type stuff...how are you? do you have experience with hcc? i surely hope not...hope you are well...are you on tx?
it's nice to meet you...sandi
it's nice to meet you...sandi
Sorry, I was pulled away before I was finished. If your coag results come back as normal, your Total Bilirubin marker is high and you scratch like flea ridden dog at night insist on liver biopsy followed by a ct scan with contrast to rule out HCC.
Welcome kanzou.
Chev, How are you? I start my tx. Friday (was supposed to be Thurs., now postponed by Dr's office till Friday). Anyway, I've been missing you.
Lauren
Chev, How are you? I start my tx. Friday (was supposed to be Thurs., now postponed by Dr's office till Friday). Anyway, I've been missing you.
Lauren
please cut and paste and read this article from 5 years ago...surely by now they must have a solution for low platlets so you can get your treatment...the below article is very interesting and there seems to be alot written on this issue...i did a search on low platlets and hepatitus c treatment...i think your dr needs to do some googling!!!
http://www.hepnet.com/hepc/news1030B00.html
http://www.hepnet.com/hepc/news1030B00.html
did you happen to read the advice mikesimon gave to biophil a few questions down the list (a question about varises)...he talks to biophil about platlets from some of his experience i thought you may want to see that if you hadn't already...
Get a PT + APTT coagulation blood test. Also get a visual coag test where they manually nick your skin surface and time the coag. Before my op my platelets always hovered around 64 but my coag time was always within range. Why? I Had HCC which throws off platelet and iron measurements. Any doc can order this test.
The alternative to conventional biopsy that Couchpotato is referring to is called FibroSure. It's a test created by LabCorp. It can be ordered by any physician, including your family doctor. It's supposed to be pretty accurate if your level of liver damage falls on either extreme of Stages 0-1 and Stages 3-4. It's that middle range where there's some debate on it's accuracy.
I recently asked my family doctor to order this test for me. She wasn't familar with it, nor was the lab, so it was a good thing that I had anticipated that and brought with me the description and specimen requirements. Here's a link to that information so you can print it out and take it with you to your doctor and lab.
http://www.labcorp.com/pdf/HCVFibroSureLabFacets.pdf
Good luck to you.
Susan
I recently asked my family doctor to order this test for me. She wasn't familar with it, nor was the lab, so it was a good thing that I had anticipated that and brought with me the description and specimen requirements. Here's a link to that information so you can print it out and take it with you to your doctor and lab.
http://www.labcorp.com/pdf/HCVFibroSureLabFacets.pdf
Good luck to you.
Susan
You probably will not get a biopsy because of your low platelets, there is a risk of bleeding. But they can dx your situation with blood work. You need to see a knowledgeable doctor, get lab work done, and get answers to your questions that you can understand. Be pro-active and demand action.
My husband was taken off tx because of his low platelets. They were not interested in giving him anything to boost them. I think some were saying Vioxx was also a platelet enhancer, but didn't they take that off the market or something?
Google cirhossis (?) and end stage liver disease until someone comes on board with sites. The itching is a sympton of liver disease but for the life of me I can't remember what causes it right at the moment.
Good luck
Mattie
My husband was taken off tx because of his low platelets. They were not interested in giving him anything to boost them. I think some were saying Vioxx was also a platelet enhancer, but didn't they take that off the market or something?
Google cirhossis (?) and end stage liver disease until someone comes on board with sites. The itching is a sympton of liver disease but for the life of me I can't remember what causes it right at the moment.
Good luck
Mattie
You should find a new doctor. Like doll face recommended go to a hepatologist. Most major teaching hospitals have clinics with a team of hepatologist on staff. I saw 3 GI docs before ending up with a good hepatologist but even every one of them recomends liver biopsies right away. LL
The only advice I can give you right now is find a new doctor, perferably a hepatologist. There is no other way to find out how bad your liver is damaged than a biopsy.
Someone else will be along to answer your question on end stage liver disease and give you some sites to go to.
Good luck to you. I hope your name fits your situation.
Someone else will be along to answer your question on end stage liver disease and give you some sites to go to.
Good luck to you. I hope your name fits your situation.
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