Aa
Confirmed Stage 3 Live Disease
Hi All,
Got the bad news today. Biopsy showed Stage 3 Liver Disease-Blood test confirmed Genotype 1a. Viral Load was was a million plus-I asked for my test results and they said they would mail them so I can't give you all the stats yet. Anyway, GI says I have a 30-40 percent cure rate given my age and genotype. I asked how long before I would progress to cirrhosis and he stated no guage to tell that at this point. Not sure if I want to treat given the fact I have no RX coverage and mid fifties with a low cure rate. And if I do treat I may be a non responder. I feel really sad right now. Can't really describe my emotions-only that my life expectency has probably been shortened considerably. Doc is looking into contacting drug rep he deals with to see if they offer drug (interferon) at greatly reduced rate if I tell him I want to do that. Life can deal you some ****, can't it. Anyway, just venting as I know many of you are experiencing this as well. Not having a pity party, just down in the dumps. Take good care
Trinity
Got the bad news today. Biopsy showed Stage 3 Liver Disease-Blood test confirmed Genotype 1a. Viral Load was was a million plus-I asked for my test results and they said they would mail them so I can't give you all the stats yet. Anyway, GI says I have a 30-40 percent cure rate given my age and genotype. I asked how long before I would progress to cirrhosis and he stated no guage to tell that at this point. Not sure if I want to treat given the fact I have no RX coverage and mid fifties with a low cure rate. And if I do treat I may be a non responder. I feel really sad right now. Can't really describe my emotions-only that my life expectency has probably been shortened considerably. Doc is looking into contacting drug rep he deals with to see if they offer drug (interferon) at greatly reduced rate if I tell him I want to do that. Life can deal you some ****, can't it. Anyway, just venting as I know many of you are experiencing this as well. Not having a pity party, just down in the dumps. Take good care
Trinity
I am stage 4 also, the easier geno 3a. Treated for 26 weeks and am almost 2 years post and svr. My odds were stated by a top flight hepatologist at 60% for a 52 week course, if I took every pill. Cleared at 4 weeks and that changed everything. Odds shot up and treatment shortened. Good luck everyone....
Wow, it's so great to hear that you were so far a long with your Hep and had such great response to treatment! It helps give me hope as my husband is at stage 3 and he's getting ready to start treatment soon. It all seems so scary as I don't know the questions to ask the doctor and what to really expect him to go through?
I appreciate your positive good report! Janet :)
I appreciate your positive good report! Janet :)
Just signed in today by the way today would be my mom's birthday she passed last year and was buried on my birthday. My brother tested geneotype 2 plus? with 500 million viral load he will have a biopsy on the 8th I on the other hand have genotype2 with 64,800 as of the 26th of July. Treatment has been out because of my thyroid. My doctors agree for me to start my kit on the 8th. My brother has had this for many years since the 90's I am not sure if this is what killed my mom leading to liver cancer. Well there are wavier programs that would help many of you all with cost do a google search for department of health hospitals in your area and key in waviers Also try hill burton they pay back medical bills as well. Best Wishes
i experienced alot of the same sides as everyone else ie: joint pain , headaches, riba rash. low platlet count, . i was lucky enough none of my labs required me to stop medication. i drank tons of h2o,took my vitiamin c and prayed alot. i made a misprint i stayed on tx. for 96 weeks i was determined to rid my body of this virus that would soon kill me. I fought with my dr. but he gave in and allowed me to stay on tx for 96 wks. he just looks at me and shakes his head now. i new i would relapse if i didnot treat longer. i had not felt right for years prior to my diagnosis now i know what it feels like ot have energy & not sleep all the time. dpnt get me wrong but the first month i was off tx i experienced an excerbation of joint pain, zits on my face, headaches, this lovely event went went on for quite a few months. around month 9 or 10 post treatment i started feeling great most all sides went away, and life is pretty good.
your first sentence I could have wrote about myself. I am new to this and don't understand the rest of your post.I was just told from a very young specialist that treatment would be to dangerous to my liver because of the low platlete count ,I GUESS, I was not particularly impressed with the guy when his best joke was 2x4.
It's encouraging to hear that someone with cirrhosis is experiencing such improvement to their liver post TX. And it's especially good to hear that you're feeling so well after doing 72 weeks.
I live in Texas and was just diagnosised with hep-b. I just started my meds Nov 7, 2007. MD told me there was no cure for me. I have the mutant hep b virus.
51yr.old geno 1a stage 4 liver cirrhosis. tx.d 72wks svr b/w weeks 12&16. continue neg. 1yr post tx. all labs have returned to normal and liver size has also returned to normal. treated with pegasys and riba. feel great
I keep threatening to get a fibroscan - but haven't yet. I see no reason to get poked, except for morbid curiosity - but why am I talking about sexual preferences here anyway.... :)
My platelets and WBCs are pretty steadily where they were before tx - just under normal range. One very knowledgable hepo cautioned me that I shouldn't worry too much if they don't bounce back - sometimes they transplant perfect livers and the patient still runs low blood counts. I guess that should offer some comfort - but I also figure something's buggered up somewhere - and just cause it may not be in the liver doesn't make it any more benign. But whatever....
My platelets and WBCs are pretty steadily where they were before tx - just under normal range. One very knowledgable hepo cautioned me that I shouldn't worry too much if they don't bounce back - sometimes they transplant perfect livers and the patient still runs low blood counts. I guess that should offer some comfort - but I also figure something's buggered up somewhere - and just cause it may not be in the liver doesn't make it any more benign. But whatever....
Hey dude, That has to be an old joke but I had never heard it, funny:). Question, do you have any intension to ck your liver w/ bx? Maybe fibroscan? If so how long. thanks, jerry
Shoot I just typed a whole thing and it went away!
Trinity - I got the same news as you and it blew me away. Fortunately, I had decided to treat no matter what it turned out to be so I was ready to go as aggressively as possible (I did 72 weeks) and let me tell you, it wasn't always easy or fun but 99% of the time it was DOABLE.
Now I am 9 months post and SVR.
I wanted to let you know, Becky is 100% correct, C2Care seemed to be very relaxed and they were really truly GREAT and got me the meds asap. The financial cap seems to be pretty high from what I can tell and they made sure I got thru my whole extension without any problems at all. They were kind and nice and couldn't have made it easier.. As long as you don't have insurance you should give them a holler.
There are other drugs that you might find you need but most of them have a patient assistance plan too.
If you can find a doctor or clinic that would take a sliding scale or something for the doctor cost...you should have no problems at all.
Good luck!~
Trinity - I got the same news as you and it blew me away. Fortunately, I had decided to treat no matter what it turned out to be so I was ready to go as aggressively as possible (I did 72 weeks) and let me tell you, it wasn't always easy or fun but 99% of the time it was DOABLE.
Now I am 9 months post and SVR.
I wanted to let you know, Becky is 100% correct, C2Care seemed to be very relaxed and they were really truly GREAT and got me the meds asap. The financial cap seems to be pretty high from what I can tell and they made sure I got thru my whole extension without any problems at all. They were kind and nice and couldn't have made it easier.. As long as you don't have insurance you should give them a holler.
There are other drugs that you might find you need but most of them have a patient assistance plan too.
If you can find a doctor or clinic that would take a sliding scale or something for the doctor cost...you should have no problems at all.
Good luck!~
Goofy.....
Bill continues to be fatigued and falls asleep at the drop of a dime. I was hoping that SVR would improve his energy levels. I also have to finish his sentences for him a lot as he continues to suffer from "brain fog".
His platelets remain low at 121 (ref range 140-400) and his Alpha-fetoprotein (tumor marker) is slightly high at 6.2 (ref range <6.1). All the rest of his blood work is in the normal range.
He is scheduled for a CT, endoscopy and colonoscopy as his last CT showed some abnormalities, although it said "non urgent follow up needed".
I'm hoping that with time his liver will continue to improve and watching to see if there are any new developments in the pipeline for the reversal of cirrhosis. At least we know that the viral atrtack on his liver has stopped.
Trinity.....
That's why I would like to see you treat the virus before it progresses to cirrhosis. The liver is remarkable in that it has great regenerative properties. At stage 3 you can still regress the damage if you get rid of the virus. It's much harder at stage 4 (cirrhosis).
Bill continues to be fatigued and falls asleep at the drop of a dime. I was hoping that SVR would improve his energy levels. I also have to finish his sentences for him a lot as he continues to suffer from "brain fog".
His platelets remain low at 121 (ref range 140-400) and his Alpha-fetoprotein (tumor marker) is slightly high at 6.2 (ref range <6.1). All the rest of his blood work is in the normal range.
He is scheduled for a CT, endoscopy and colonoscopy as his last CT showed some abnormalities, although it said "non urgent follow up needed".
I'm hoping that with time his liver will continue to improve and watching to see if there are any new developments in the pipeline for the reversal of cirrhosis. At least we know that the viral atrtack on his liver has stopped.
Trinity.....
That's why I would like to see you treat the virus before it progresses to cirrhosis. The liver is remarkable in that it has great regenerative properties. At stage 3 you can still regress the damage if you get rid of the virus. It's much harder at stage 4 (cirrhosis).
Trinity - hang in there.
There are programs and things that can help. The pharmaceutical companies even have special programs for assistance.
Don't panic.
Liver Disease and HepC are funny things. They can often progress slowly - in fact, it can often be the case that you won't go any further -depending on a lot of things... genetics - lifestyle - food intake -etc. etc.
So no one can predict what will happen or how fast.
I think if you just hang in here - read the forum really well --- I mean seriously read the posts that are here for the past 6 months... Get informed... check a couple of other sites like Janis and Friends --- and get a list of questions together - you can make some informed decisions.
TX can be really ---- REALLY ---- REALLLLLLLLLLLLLLLLLY awful.
I have a friend who went through Radiation Chemo AND HCV TX... She said she would do radiation therapy 10 times before doing INF and Riba once more. LOL! I didn't realize that it hits some people "that" hard. But it can.
So be aware of all the possible side effects and what can happen to you.
It's a double edged sword for some...
For others - it's a light at the end of the tunnel.
For me - I'm very lucky. Very blessed. TX was hard - but 9 months post tx - I'm feeling a whole lot better about HCV TX. I got my SVR --- so I'm very happy. But it wasn't easy. And there are folks here who have done TX more times than I can even imagine being possible.
So ---- read a lot ---- get a list of questions together - and then ask...
These folks here are absolutely amazing.
And don't be surprised if you go through all the stages of grief. OK? That's VERY normal when getting diagnosed. Just take one day---one minute at a time.
Hugs, and nice to meet ya.
Meki
There are programs and things that can help. The pharmaceutical companies even have special programs for assistance.
Don't panic.
Liver Disease and HepC are funny things. They can often progress slowly - in fact, it can often be the case that you won't go any further -depending on a lot of things... genetics - lifestyle - food intake -etc. etc.
So no one can predict what will happen or how fast.
I think if you just hang in here - read the forum really well --- I mean seriously read the posts that are here for the past 6 months... Get informed... check a couple of other sites like Janis and Friends --- and get a list of questions together - you can make some informed decisions.
TX can be really ---- REALLY ---- REALLLLLLLLLLLLLLLLLY awful.
I have a friend who went through Radiation Chemo AND HCV TX... She said she would do radiation therapy 10 times before doing INF and Riba once more. LOL! I didn't realize that it hits some people "that" hard. But it can.
So be aware of all the possible side effects and what can happen to you.
It's a double edged sword for some...
For others - it's a light at the end of the tunnel.
For me - I'm very lucky. Very blessed. TX was hard - but 9 months post tx - I'm feeling a whole lot better about HCV TX. I got my SVR --- so I'm very happy. But it wasn't easy. And there are folks here who have done TX more times than I can even imagine being possible.
So ---- read a lot ---- get a list of questions together - and then ask...
These folks here are absolutely amazing.
And don't be surprised if you go through all the stages of grief. OK? That's VERY normal when getting diagnosed. Just take one day---one minute at a time.
Hugs, and nice to meet ya.
Meki
Like Becky's husband - I got the Cirrhosis news from my bx. Really quite a shock. I asked the doc for a second opinion, and he gave me a once oover and said, "Your nothing special to look at either...". Bu-da-bungt. Anyway the cirrhosis was later modified to 'early cirrhosis' -- a little better. After a while, I adjusted to the reality, treated, SVR'ed and now hoping the ol' liver will improve. Basically, I'm doing pretty well.
Becky, If you see this, I wonder what you hear for you husband's prognosis going forward? Does he have lowered blood counts - have they improved on this side of treatment?
Becky, If you see this, I wonder what you hear for you husband's prognosis going forward? Does he have lowered blood counts - have they improved on this side of treatment?
My husband was in much the same boat that you are in. He was 56, genotype 1a, early cirrhosis, with fatty liver and viral load in the low 1 millions. He finished treatment 13 months ago and I'm happy to say that he is SVR (cured).
I'm just piping in to let you know that all is not lost. It can be done. He actually treated twice although he never finished the first treatment. We didn't have drug coverage the first time and all his drugs were donated by Schering. The Commitment to Care number that someone posted was the one we used at the time and they were great to us. I was worried that our income would be too high, but they have very liberal guidelines and shipped the medications directly to our home every month.
If you could get it all set up with a doctor - preferably a hepatologist - and one of the drug companies, you could just try treatment and see how it affects you and how fast you respond. Some people are lucky enough to get through treatment with very little side effects. You'll never know if you are one of the lucky ones until you try.
The other thing is that you should get your viral load checked by the 4 week point of treatment. If you are undetectable at that point your chances of success rise dramatically. Those early viral load tests are very important in making future treatment decisions.
I'm just piping in to let you know that all is not lost. It can be done. He actually treated twice although he never finished the first treatment. We didn't have drug coverage the first time and all his drugs were donated by Schering. The Commitment to Care number that someone posted was the one we used at the time and they were great to us. I was worried that our income would be too high, but they have very liberal guidelines and shipped the medications directly to our home every month.
If you could get it all set up with a doctor - preferably a hepatologist - and one of the drug companies, you could just try treatment and see how it affects you and how fast you respond. Some people are lucky enough to get through treatment with very little side effects. You'll never know if you are one of the lucky ones until you try.
The other thing is that you should get your viral load checked by the 4 week point of treatment. If you are undetectable at that point your chances of success rise dramatically. Those early viral load tests are very important in making future treatment decisions.
You sound like a very positive person, which will serve you well...everyone gets sticker shock from this and projects into the future...whenever I do that, I try to remember I'm no fortune teller, maybe positive things could happen, doesn't always have to be negative, but that's where my mind goes sometimes...I try to do whatever coping skills will help me, they almost always work to lift my mood, and i try to stay in the moment. The vast majority of us will live long happy lives. Best to you.
Thank you to everyone for your very kind words. I feel I owe myself to a least try tx and will be looking into programs and such for those who do not have RX coverage. I haven't given up hope but as you all well know it takes a little while to process the bad news that I received yesterday. Today I went to work and just put on the happy face. Each day will get better and hopefully by the grace of God I will find what I need. I really expected to hear I was HCV positive but wasn't quite expecting the Stage 3 Liver Disease. That set me on my butt for a while. In any event, I'm here, I'm still breathing, I feel good for the most part except fatigued more often but will research all avenues until I find the one I need to go down. Take care - ya'll are really very very caring and kind people and it means so much to me as I face this.
Trinity
Trinity
my son was a 3 and a teenager and he cleared at 2 weeks, finished tx and we are praying for svr - there is hope
Hi, it's not the end of the world, just a wake up call is all. I'm 59, 1A, stage 2, grade 2, 5.2 mill VL, and HCV positive for 38 years, thank you Summer of Love in SF. I am 27 weeks into treatment and I, like MerryBe, am happy to be doing it. I'm doing something to fight back and I am very fortunate to have cleared the virus at 8 weeks. I don't know what the future holds, but I know I am doing what's right and I feel good for it. I'm fortunate in that my sides are mild and nothing has ever hurt. I have fatigue, brain fog and "Chemo brain". I have gotten used to tx at around 20 weeks and I can't remember when I started and I don't know when it'll end but I can say, "that which doesn't kill you, makes you stronger" Do what you can to get better, wishing you and easy ride.
You found a great support group here. Plan your strategy.....learn ALL you can.
There is lots of hope for you. Its normal to be scared..just know there is help for you.
Try to see a hepatologist and hopefully you will get tx soon.
good luck
There is lots of hope for you. Its normal to be scared..just know there is help for you.
Try to see a hepatologist and hopefully you will get tx soon.
good luck
I wish there were time signatures on these posts so I could tell you if it's past your bedtime.....
I'm just amazed you are so resilient to be offering help right now. You rock.
I'm just amazed you are so resilient to be offering help right now. You rock.
don't give up. a ton of free stuff is available, someone post that please. I'm further along and treating...there aren't any guarantees in treatment, but there is a lot to consider before resignation should set in. There one person in here named Proactive....but that should become all our middle names. stay. learn, don't give up.
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