Hep C can be insideious.
I wasn't diagnosed until I had End Stage Liver Disease, decompensated cirrhosis. I didn't know it because, like you, I wasn't feeling too bad. In fact I didn't go to the doctor until I swelled up with ascites.
You need a good experienced hepatologist to answer your questions. Make a list to bring with you.
BTW: I'm only here because I had a liver transplant. When transplanted, I was living on 8 % of my liver and probably had weeks to live. But, I never felt as sick or had as many symptoms as other people. I never got cancer.Edema only hit me at the end when I flew in a plane. I kept the ascites at bay for 3 years by avoiding salt in my food.
Don't assume that because you aren't as bad off as others that its alright to ignore your condition.
Hey there! I know this is all confusing. I wanted to say that I did not know how sick I was until I had the biopsy and found I had cirrhosis. I had been fatigued for years, had diabetes, low thyroid, cyroglobulinemia (was bleeding under the skin) had low platelets when first dx, never knew how sick I was. That is the sad thing about HCV and cirrhosis. You can be close to death and seem fine til it is too late to treat.
I think your doctor is saying that you should treat as soon as you can get into a trial. Is he looking for a trial for you?
If you have cirrhosis I wonder why he has not put you on tx now. He may feel you can wait for the new drugs that are coming out hopefully in the beginning of the year. Once I found out I had HCV, then cirrhosis, I was in tx within two months.
I hope you can find some answers. In my mind 2 months would not make that much difference in your MRI unless something has drastically changed for you since the last MRI.
How are you doing?
I see from your profile,that you are a genotype 2, and you have never treated before, so when Sofosbuvir is approved in early December, you need to start your Treatment right away.
Go to the MRi, as it is a good time to ask your Dr these questions, youhave no time to lose, this is very serious. Ask him why you should look for a Trial, when you are a perfect candidate for Sofosbuvir, which is being approved in December! You wont even have to take Ribavirin, and only 12 weeks. I'll be praying for you~
Blue...as you know...I am Stage 4 ESLD...decompensated liver...low Meld ...HCV load of 1 Million.when asked what percentage of my liver was still viable I was told zero but it is at a moderate level.
Hector has posted several times the stages of cirrhoisis...with compensation and with decompensation. There is a big difference.
There are stages to each...and each stage has it's own levels.
It depends on the stage and level and whether your liver is compensated or decompensated that make a difference in a competent hepatologist making the decision to treat the HCV in a current trial.
Also, like in my case, where my liver is decompensated and I have a HCV load of about 1 Million, we would like to treat the HCV but he is not going to compromise the condition of my cirrhosis liver to do so.
Like at my stage, even if there was miracle pill to take tomorrow that would instantly cure my HCV I would still have to have a transplant.
There is criteria for the trials and depending on the stage of your liver and cirrhosis, it will be decided if you qualify. In my case when I asked my doctor today about the Sofosbuvir he said he is not going to do anything to compromise the moderate level of my Stage 4.
I have one more test and I go before the board for approval. A few days after my surgery when I am out of ICU I will be given the new options they have which will clear the HCV.
In my case I look at each thing I have as separate issues. The HCV. The HE. The cirrhosis. All three are of concern but the first thing I need to do to eliminate the other two is have a transplant.
The MRI is a good diagnostic test. You shouldn't have to chase down a trail. A good hepatologist should be looking for one for you to be on. They aren't going to put you on a trial until they do all the tests they want.
I saw my doc today and it was amazing how many people in there lived hours, many hours from the facility. Blue....if you have a chance to clear the HCV and if your cirrhosis is not decompensated then do whatever you can to treat.
When he told me it would take about two weeks for me to get approved and on the list...l literally came out of that office and had a panic attack....me....calm, pragmatic me....felt like I was coming out of my skin, just wanted to run while at same time retreat to my sleepy happy place. Blue...do what you can. And they are right......start making a list of questions. I made him answer everyone of them on mine today.
Oops, I didn't mean "Ribavirin" I meant "Interferon", sorry about that, Blue.
I hope you get Treated soon, be it a Trial, or the Sofosbuvir~
“Doctor told me that I should treat with clinical trial, but I don't know what he means by when one becomes available, plus If I have advance cirossis can I wait until the first of the year for the new treatment.”
Your cirrhosis can’t be too advanced otherwise you would be too ill to treat your HCV. Meaning you would have decompensated cirrhosis. Since your liver disease is compensated (which is NOT advanced cirrhosis), you can still wait to treat your cirrhosis. There will be new non-interferon treatment from Gilead available in early 2014 that has a very high cure rate in genotype 2s. There is no need to look for a clinical trial. Any knowledgeable hepatologist who treats hep C should know this.
“I also have an mri apt on October 7th. I just had one done in early august. What is he looking for?”
Having an MRI in only 2 months after the previous MRI usually means they are looking for HCC (liver cancer). All people with cirrhosis should be monitored every 6 months for HCC using ultrasound and AFP blood test results. An MRI is commonly used to determine just what type of mass was seen previously. You should ask your doctor why the test is being done. Only they can say for sure. An MRI with contrast is not used to monitor progression of cirrhosis. Progression of cirrhosis is determined by blood tests (MELD score tests) and complications of cirrhosis such as ascites, HE, varices, etc.
“Can hepc and cirrhosis progress in as little time as 2 months I live 3 hours away from transplant center and I wonder why I cant have the mri done in my town. Somone told me that they get results right away.”
First hepatitis C doesn’t “progress”. It just replicates. When it replicates it damages the liver. So as long as you are infected with HCV it will continue to damage your liver.
Can cirrhosis progress in as little as a few months? Only in persons with advanced liver disease called End-Stage Liver Disease. Which is the final stage of cirrhosis. Which you don’t have. Only transplant centers can properly detect and diagnose HCC. It is done on a daily basis at liver transplant centers. Other MRI centers can not. I would not trust any MRI report done outside of a transplant center. The experience and expertise of the pathologist is critical to a reliable MRI report. To risk missing HCC because of not wanting to drive is a poor reason to risk your life. HCC is a deadly cancer in cirrhotic patients. Unless it is detected early and treated properly while a patient waits transplant survival is poor.
Please learn more about how serious your illness is by asking your doctor questions so you understand what is happening to you. Also there are good sources about cirrhosis and hepatitis C on medical web sites. That can explain all about your illnesses.
Hector, what would you do, I have been having the usual mri, ct, ultra sound and afp tests for several years now at Kaiser. My dr. at Kaiser who is a GI doc has been very diligent about monitoring my afp's that go from normal to high range in that pattern. He watches it all very carefully and gives sends me an email report on each test and result. So far, all the scan results have been within safe range. I saw your very famous Dr. Terrault at ucsf several months ago on one occasion and paid out of pocket. I'm a kaiser member, what would the likelihood of finding a PPO plan that would not charge an enormous fee for my pre-condition. Do you have to wait until decompensated to get medicare? Do you know of any insurance plans that work for people who have compensated liver condition do in order to switch to ucsf med center? I'm enrolled in an upcoming study at NIH, to be in a Gilead 8 week non inf/rbv all oral trial. They should have almost all my history in a week or so. They have a team of specialists over there that if I get accepted, I will have a very clear idea of where I stand regarding my current medical status. They have a 5 hour screening once accepted.
Hector, my thoughts and prayers are with you it must be very difficult lately. Keep us informed on how you are doing.
Hi everyone -
It's fine to talk about Obamacare, as it pertains to Hep C - treatments, testing, etc., but please leave any editorial comments out. Good or bad, changes are coming, and it is important to understand how those changes will affect you, but this is not the proper forum to discuss it politically.
" Good or bad, changes are coming, and it is important to understand how those changes will affect you,"
Exactly, so when choosing your insurance make sure the doctors you need to see and the hospital you need to go to are in their "network"...
Not sure if my other post went thru. Have almost the same HCV as you and my Dr is trying for trial in Oct. If that does not work I am doing old school tx.
"when you are a perfect candidate for Sofosbuvir, which is being approved in December! "
Really ? I didn't know you could read the future.
I recall when we were waiting for teleprivir to be approved and how it took much longer than anyone thought.
It's fine to say it's being projected at being approved as early as December, but please don't state it as fact when unless you really can read the future, you simply don't know. None of us do including our doctors.
Well then, as HectorSF put it up above
Your cirrhosis can’t be too advanced otherwise you would be too ill to treat your HCV. Meaning you would have decompensated cirrhosis. Since your liver disease is compensated (which is NOT advanced cirrhosis), you can still wait to treat your cirrhosis. There will be new non-interferon treatment from Gilead available in early 2014 that has a very high cure rate in genotype 2s. There is no need to look for a clinical trial. Any knowledgeable hepatologist who treats hep C should know this. "
"Really ? I didn't know you could read the future" sounds a bit blunt to me?
I admit I didn't read Hector's entire post.
And I admit to being blunt. It isn't always my best trait.
I also see that Hector didn't give a date but it is still beyond anyone's ability to know for certain which I'm sure he'd admit in a heart beat rather than trying to point the finger elsewhere.
Hector is also a very sick man, and despite that still gives amazingly correct advice 95 % of the time.
My own hepatologist told me to expect teleprivir to be approved a year and a half before it actually was. From that experience, I've learned that nobody can outguess the FDA .
Yes, and I agree, your point is very valid. We waited years and years for The Triple Treatment, indeed.
Hectors' posts are amazing, and you and him are both very up to date with all this stuff, and both make intelligent posts.
I can also admit to being over-sensitive, and didn't mean to point any fingers AT Hector, I only wish to be on the same page WITH Hector, as it is always an honor.
"Doctor told me that I should treat with clinical trial, but I don't know what he means by when one becomes available, plus If I have advance cirossis can I wait until the first of the year for the new treatment."
Maybe your doctor is suggesting a clinical trial for a very good reason, The cost??? Treatment is not cheap and neither will be these new drugs. Where as in a clinical trial all of the tests, doctor, meds, are free. Plus you are in the care of the very best....... Something to think about... Best to you
I got a little over-excited talking about Obamacare in a previous post and it was deleted. I'm okay with that, I agree I probably went a little past the appropriate boundary between help and politics. I'm reposting just the help part now: if all goes as originally planned, as of January 2014 no insurer will be able to deny you coverage based on a pre-existing condition, so hopefully you will be able to find a new policy with the coverage you need, to start in January. I have a Blue Shield PPO plan and although I use Stanford Liver Clinic, I see that UCSF Medical Center is also a preferred provider, so Blue Shield might be one possibility for you. Otherwise you can call UCSF and ask them which insurance plans they do participate in. Good luck!
Yes, there is a website that will begin signing people up (according to Obama during his speech the other night) on October 1st, at this website that I am going to post, and then it begins on January 1st~
Blue's liver disease is pretty advanced, and I think she is decompensated, and I suspect she is too ill to do the current triple therapies. She takes Lactulose for Hepatic Encephalopathy. I think her best approach is to talk to her hepatologist so that she doesn't get confused. Hopefully, sofosbuvir will be approved in December, and hopefully she'll be able to treat with sofosbuvir. If not, perhaps her hepatologist will be able to recommend an appropriate trial, given her decompensated Cirrhosis. Blue, keep your MRI appointment and talk to your hepatologist in the transplant center, so that you can receive proper care for your advanced Cirrhosis.
I read that the Simeprevirer was submitted to the FDA a month before the sofosbuvir and was originally scheduled to be reviewed the end of this month.
With the govt shut down..who knows? This was just the review not the approval.
I do agree that even with a schedule you never know, I waited for the VX950 from 2007 till 2011.
The good thing is that the news can give you hope.
I will try to find the article about the approval process..
yes, I was trying to decide which company ie ppo or hmo, etc to sign up for. I am so glad I found this cite bc I was leaning towards kaiser but some of the posts here have made me re examine that choice.
The new drugs have been approved....yeh, but now it looks like even with insurance it may be difficult to get treatment. I understood the problem when the treatment involved interferon bc the side effects etc., but you mean I still might have to wait until I actually have stage 2 liver disease to get treatment. I was so excited, but now I am bummed again.
Anyone have any thoughts or know something else or somewhere or ?
Thanks for any info. I live in Ca. was diagnosed with type 2 a year ago. Am hypothyroid and thought I was loosing my mind only to find out that hep c doesn't only affect your liver. No signs of advanced liver disease. Elevated enzyme levels, low viral load of 77,000. Prob had it for 30 years ...?