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PLN - Odds for svr

Hi Pam and everyone,

I just read this on Dr. Cecil's website and thought I'd pass it on.  Imho, it strongly supports our plan to treat for 48 weeks even if we're in group C.  The date on this post is October 06.

The ALT and the AST give you an idea of how active the HCV is now. More important is the amount of fibrosis.

If you had stage 3 fibrosis and you wait you will almost always progress to cirrhosis in the next 5 years unless you cure the HCV infection.

A relapser is a patient who was negative for HCV RNA, but the virus came back after treatment. Since almost all doctors treat stage 3 or stage 4 patients for the standard 48 weeks there are many relapsers. About 20-30% of stage 0, 1 and 2 patients relapse with standard treatment, but half of the stage 3 and stage 4 patients relapse if genoype one and 48 weeks of treatment.

We treat genotype one patients with stage 3 or 4 for two years and it reduces the relapse rate. Ask you doctor to retreat you for a longer time or try to get into a clinical trial with VX 950 next year. You are a curable patient who did not get cured yet.

I guess it's really nothing new but I don't remember ever reading or hearing relapse rates according to stage before.  I just thought it was interesting.

Char

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Avatar universal
Hi Ina.  I think Dr. Cecil's approach to treatment has perhaps cured (SVR'ed) more patients with advanced stages than perhaps any other doc out there. But I did run into several people not long ago who said Dr. Cecil is not as "up there" as people like to think or claim he is  (or something like that).  Put it this way - they didn't like him as much as I did, by far.  But that's them.  I love him!  I have read from his site for several years and his forum, and I regard him as one of the best there is.  I know one thing - if Duke ever tells me that I cannot treat or that I'm too far along  (and that isn't going to happen, I don't think - I'm just imagining a scenario of "what ifs")  I would do whatever I had to to get to KY to see Dr Cecil.  (I have relatives there- lol, and so -I could probably do it, and it's for sure I've thought of ways to do it.)  When my first GI doc mentioned this type of treatment to me (starting me at a lower dose and then bumping me up until I was tolerating it), I didn't want to do any treatment, not at a lower, not at the full, due to my first reaction, and the doctor wasn't comfortable trying me again, either, (although he said he would), but he did say he would be more comfortable if I went to Duke for treatment because he thought I had special problems (concerns) that were out of his league and would be better handled by the best doctors and those very familiar with treating Hep C (which he wasn't).  

Duke is supposed to call me today about this liver biopsy that I'm going to ask them AGAIN about.  I want another one.  They haven't wanted one  (it's been 3 1/2 years).  I have become uncomfortable with that - I don't care what the doc is saying about "your liver is looking great" . Well I do care.  I think that's wonderful he thinks that, and it might indeed be sitting right where it was (G3 S2) 3 1/2 years ago, but I want another look because I do not want to wait for VX or HCV 796 if my liver has advanced.  I would want to start SOC now.  (they have offered me trial with HCV 796 which wont' start up until March or April, and we don't know yet if it allows rescue drugs. If biopsy shows stage 2 still, I feel that I can wait.  If not, I don't have time to be messing around around with 796.

But back to Dr. Cecil. I think the world of him and think he's offered treatment to patients who deserved it and who wouldn't have gotten it otherwise.  If there was ever a "God" in the world of helping people with Hep C and treating them successfully, Dr. Cecil has my vote.  

Have a great day!  Gotta run!
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Avatar universal
BR: "...nd he mentioned that some hepatologists are now advocating treating for 48 weeks after reaching undetectable,"
------------
My hepatolgist also recommends 48 weeks after non-detectible for aging stage 3's like myself -- however since I was non-detectible at week six, that totalled 54 weeks of treatment. Cecil would have recommended 96 weeks -- major difference. And again, the other hepatologists I consulted with -- all highly experienced -- only recommended 48 weeks total based on my EVR. All these doctors specialize in Hep C treatment and are/have been involved in major trials so they are drawing from a large database of cases.

-- Jim
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Avatar universal
Should have read....can't tolerate a full dosage at start.
Sorry.

Ina
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Avatar universal
you said:
Hi Jim. You're exactly right about that, and I've heard "arguement" (or skeptism) for lack of better words (can't think of the right word now) from those I consider very knowledgeable about Hep C and treatment (that Dr. C is not doing what most docs do and has a different approach on some.) But he is very nice. Speaking of lower dose, since I had such an awful reaction the first time on Peg/Rib, I had wondered if a lowered dose in the beginning and then tapering up might serve me better (in fact my first GI doc three years ago mentioned doing that - starting me out lower on the Peg and Rib if I did attempt again), but my current doc says that's not the way to go. Oh well, I can't say I didn't try the softer way :)

I don't know what type of reaction you had, but I can tell you that he tx mostly stage 3 and 4, endstage liver disease, those that are awaiting transplants, and those that other docs have given up on.
Patients like that can't tolerate a full dose of Interferon and Riba.
What sets him apart from other docs, is, that he will give you every opportunity to achieve SVR, no matter how small the chance.

If you for example have only a 5% chance oven achieving SVR, and you want to take that chance, he will give it to you if your health permits.

Ina
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Avatar universal
You said:
cause what a shi^^y thing to do to people...people can justify doing most anything to themselves...

Haha, we have people here doing the same thing, one particular person comes to mind.
Still haven't recovered from that one, shi^^y is too mild of a word.

Ina
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Avatar universal
No prob whatsoever, don't worry about it. When it comes to 'Brian' Fog, believe me I'm well acquainted with the chap!

You haven't heard anything more about our unblinding have you? Guess we're just gonna have to wait it out until who knows when. Hope you had fun at the Christmas thing and actually getting out for awhile. Something I should try this weekend. Talk to you later...
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Avatar universal
Dr. Cecil may be way ahead of the curve in terms of treating patients for two years.  I asked my doctor today about extending to 72 weeks (I finally got to UND <25 iu/ml at 22 weeks) and he mentioned that some hepatologists are now advocating treating for 48 weeks after reaching undetectable, although he laughed and said he did not know if he would go that far.  He also approved me for 72 weeks, which would give me 50 weeks past UND.

I think Dr. Cecil has argued that the two year treatment isn't necessarily that harmful to the patient as doses are increased gradually as treatment progresses and the liver is probably very slowly becoming more healthy too during the long treatment.
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Avatar universal
Hi mremeet,

There's a very experienced doctor online named Dr. Ben Cecil. He's the most experienced HCV doctor I'm aware of, and has treated more than 4000 patients with HCV (mostly in prison).

I'm sorry for misquoting you. You didn't say he was on line on this site....I have no idea why I just assumed that. I thought I was escaping the brain fog sx but obviously not. This is how crazy rumours get started.  Sorry about that.

Char
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86075 tn?1238115091
Actually, Hepatitis Researcher is a doctor, now a hepatitis researcher, living in Los Angeles with the rest of us nutballs (but he isn't a nutball of course, though he has a great sense of humor) and Dr. Cecil (a prominent, and very compassionate hepatologist) is, I believe, in Kentucky...they are not one in the same...Dr. Cecil has a website, I guess they moved url's cause it's not in my list anymore (sure an easy search will get you there.)

As for who is who on this or any other internet website and chat, not touching that with a ten-foot stethoscope...

Knew a guy (a writer) who went on as a woman on a chat site for 4 years...had a made up identity, had manufactured a picture of himself (which was a composite of a few actresses, he was very good at graphics) and when one of the members wanted to talk with him on the phone, he'd get his wife to talk to them...he's writing a book on this experience, which I hope goes nowhere, cause what a shi^^y thing to do to people...people can justify doing most anything to themselves...
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Avatar universal
Are Dr. Ben Cecil and HR the same person?
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Avatar universal
Kalio1 is Dr. Ben Cecil!!
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Avatar universal
Elaine don't ever be sorry for talking about your fears and don't ever feel like you have dumped on someone.  If I could give you a big hug, I would.  As a mom, I can't imagine the heartache if my son was dealing with this.  I'm glad it's me and not him.  What you said about your son was beautiful.  You just hang in there and don't lose hope.
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Avatar universal
3 years ago I drove from FL to KY just for an appointment with Dr. Cecil. And I don't regret it. He's a wonderful person. Back then he answered all of my emails after we met. He even faxed his opinion about my Tx strategy to my local hepatologist.

Is HR really Dr. Cecil?
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Avatar universal
HR is not Dr Cecil. Its easy to find out who HR is by googling his companies website.
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Avatar universal
I agree with you
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Avatar universal
Elaine, you don't have to apologize to me.  I can't even tell you how brave I think you are.  It's impossible for me to imagine one of my children going through this.  The way you're handling it is beyond admirable.

Chcnme, mremeet posted the other day that Dr. Cecil was HR.  Knowing mremeet, if he posted it, I'm guessing it's true.  I can't imagine him posting it if he weren't pretty sure about it.  I'm sure he'd explain how he came to that conclusion.  I don't think it's a secret anymore, at least, I hope not.  

Kalio, if this is something we shouldn't be openly posting, please let me know and I certainly won't do it again.
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Avatar universal
Actually, it just occurred to me that Dr. Cecil is in Kentucky and I believe where Kalio and the other person went for their fibroscan was in LA, so now I am confused.  Sorry if I've mis-led you.  We're gonna have to ask mremeet where he got that information from.
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Avatar universal
LMAO  that made me laugh so hard.   It was like.... perfect timing.  I needed a good laugh!
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Avatar universal
Kalio is INDEED wonderful!  She is a great person with so much knowledge and so very helpful! She is tops!  What space said, though, just made me burst out laughing.
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Avatar universal
Doesn't he, Elaine -lol.  It was perfect timing.  I know you needed a smile and a laugh :)  I know I did, too.  

Valtod, wow - so you went from Florida to KY to see him, eh?   If I could, I would.  I have a whole lot of respect for Dr. Cecil. He's just a great doc.  A great man.  He's wonderful.  He thinks a lot of VX-950 (and I think for good reason.)  I sure wish I could see him - he is really great to all of his patients from what I've heard.  But then again, I have a good doc (great doc, treats me wonderful, nice, compassionate) - I just sometimes get nervous watching and waiting and wondering. Those "I'm having doubts and second guesses" can be tortuous at times!  

have a good one
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Avatar universal
Hi Char.  Thanks for posting that here.  I recall reading that before (that he really believed in extended treatment - up to two years - for some.)  Dr. Cecil is just a wonderful man.  He's got some great info on his site, and he's so willing to help everyone.  I've never seen him miss one question on his forum. It's times like these I wish I still lived in KY.
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146021 tn?1237204887
Dear Sweet Elaine:
My heart goes out to you. You have been through so much with your family, and the worry never ends. I'm sure it's the constant worry,seeing him today and he's had this cold for so long and is probably run down, then the post on top of the the other stress. I'm sure the post is not the whole reason your depressed, just the proverbial straw that broke the camel's back. Nick is a grown man and I'm sure it's hard for him to see you worry about him. I picture him sweet and kind and trying to protect you from more stress.
There's nothing I can say to mend your broken heart, I just know that there is no real way to tell how quickly his disease will progress. He is doing the right things and his liver must have gotten some break during tx.
Hang in there. You have given me so much support and kindness I wish I could carry some of this burden for you.
Big hugs today,
Take care of Elaine!
Janice
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Avatar universal
From Dr. Cecil's website:
<A HREF="http://hepatitisdoctor.com">http://HepatitisDoctor.com</A>

Ribavirin does not add much to the fall in the viral level. It is the interferon that is the muscle drug. Ribavirin does not transform a nonresponder into a responder. What ribavirin does wonderfully is greatly reduce the chance of viral breakthrough (HCV-RNA falls with treatment, but then rises even though treatment is continuing) or relapse in patients who respond to interferon. A relapser is a patient who became undetectable for HCV-RNA on her previous treatment, but the virus came back when the treatment ended. A relapser is a proven responder and will almost always respond again when retreated. Relapsers must be treated longer and sometimes stronger to prevent a second or third relapse. Cirrhotic genotype 1 patients are classic relapsers. The doctors treat for 48 weeks and half of the responding cirrhotic patients relapse. It is very frustrating for the patient and physician to relapse. I aim for 2 years of treatment for cirrhotic patients. By treating longer, the immune system has more time to remove 100.000% of the virus from pockets of scar tissue in the cirrhotic liver.
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Avatar universal
LMAOLMAO! Oh my - that is just awful (but so funny, too!!)  Can you imagine?  Sheesh!  And we thought we had problems!
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