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!
BR: "...nd he mentioned that some hepatologists are now advocating treating for 48 weeks after reaching undetectable,"
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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
Should have read....can't tolerate a full dosage at start.
Sorry.
Ina
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
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
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...
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.
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
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 :)
Hi cool. I don't know what bleeds Elaine was talking about her son having. I'm sure she'll be back by. While I'm here, I'll tell that when my platelets were real low (right before diagnosis), I was having awful nose bleeds (had never had them before.) It would start bleeding on physical exertion and it wouldn't stop - well it finally would, but it bad. I also started noticing bruises all over me (for no reason.) When they started treatment, the nose bleeds got really bad, and I was also bleeding from around all my teeth. They finally pulled me. My platelets are OK now, and I have no more bleeding, thank goodness, and no bruising. A common site of "bleeds" is from esophageal varicies (dilated blood vessels in the esophagus, due to liver disease.)
I was sorry to read about your relapse in another thread. Hang in there.
I think her son is a hemophiliac if I remember correctly. And since hemophiliacs require frequent and large blood transfusions, I think he might have acquired HCV that way (before HCV was tested for in the blood supply). Something I'm all too familiar with, unfortunately.
jim - I agree about Dr C's treatment protocol being a bit unorthodox. But the thing is, is that he has so much experience, more than any doctor I know. He really has a sheer volume of patient experience (numbering in the 1000's) to fall back on that makes me take what he says pretty seriously. I can't know definitely if his 'slow start' strategy is what's best overall for most patients. But I believe his philosophy is that the total number of patients who are able to complete treatment is higher, due to the more gradual introduction of drugs (making dropouts from severe sides less likely). And because the total completion number is higher, I think he feels his overall SVR rate is comparable to the standard 'SOC shock method', with less side effects and a more humane patient experience overall. I've also often wondered if the shock of starting treatment so abrubtly might be a catalyst for triggering autoimmune issues in some. I sure felt that way after my first shot, it was like getting hit by a ton of bricks. Makes me think an experience like that can't be good for the body and just might help to induce AI-like problems in some patients downrange. No proof of that of course, but it does make me suspicious.
ch - Thanks for the link, appreciate it. I read it yesterday, looks pretty promising. Lets keep our fingers crossed the VX works out for all of us. Thanks again...
could anyone inform me what elain is reffering to when she mentions her sons bleeds? im not sure what that means.
Hi Mike. I don't know if it's me or the site (Reuters) but I had been trying to get to some updates, but everytime I would try to read them it would flash message at me "IE has to close now". So I went in sideways - lol - and grabbed it up on a search at Reuters, "VX-950 Mchutchison". I'm able to read most of the articles (read one in its entirety), but on one of them I still keep getting a message "IE has to close now". ?? beats me, but they're interesting. Hope you can read them.
If this link below doesn't take you to the search, go to reuters and type in vx-950 mchutchison, and it'll pull them up for you.
http://search.us.reuters.com/news/search.aspx?blob=vx-950%20mchutchison&WTmodLoc=ussrch-top-quote
From C.'s site per PDS: 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...Since almost all doctors treat stage 3 or stage 4 patients for the standard 48 weeks there are many relapsers...
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I have heard nothing but good anecdotal reports from those here treating with him, but it should be pointed out that he does not follow commonly accepted treatment protocols. For one thing he starts the Peg at a lower dose and then gradually builds it up over a period of weeks. This is the opposite of the "hit the virus hard and fast" theory that most cutting edge hepatologists now seem to be embracing, with induction therapy (double dosing) being a prime example. The other thing is that Dr. C. recommends 2 years of treatment for geno 1's who are stage 3 or 4, even with EVR -- at least he did a year ago. I was a stage 3 with EVR and ending up consulting five hepatologists regarding tx length and the longest anyone recommended was 54 weeks (my treating doctor) with the other four all saying 48 weeks was sufficient. Lastly, prior to treatment, I saw a fibrosis "expert" who would disagree with the implied near certainty that stage 3's progress to cirrhosis within five years. Of course they might, or they might never.
-- Jim
I don't think HR is Ben Cecil. PDS I think you might have gotten confused on one of my posts where I referred to Dr Cecil's credentials and website. Maybe HR was also mentioned in the same thread, which may have mistakenly given you the impression they were one in the same.
By the way, any new news from our unblinding stuff?
Good golly - that guy needs worse that TP around his house, eh? lol. Yeah... people just have to be oh so careful on the internet because you honestly do not know what is on the other end. That's not to say that most are good (I think they are), but boy oh boy - meet one wrong smart and convincing lunatic and ... they can truly snow you to believe almost anything.
Have a great weekend! You ole nut, you, out in LA -lol :) My sis went out there a few months ago. She loves it out there. Says the people out there are nothing but healthy healty healthy and very health conscious and that it's a lifestyle! She despises Baton Rouge (where she has lived for 15 years or more) and says before she dies she is going to live in LA and die in LA! lol
I know, it sounds funny, and is kinda...but not to those members, AT ALL...he said it shut their political website down for awhile and it was really pretty big...many of the members really befriended this "woman" and felt really, really violated and betrayed when he just decided to end the charade and fess up to all of them...when he related this story, I told him I hope they hunt him down and at least toilet paper his house really well...half kidding of course...he worked at a place I used to work...really creepy I'd say...but people lie even when you see them face to face, God knows on the Internet...though still, all and all, I find most people to be on the up and up and very well meaning...hope you have a good weekend...(even after that creepy story, ha ha)
One thing that does make me smile, I wonder how many guys thought they were flirting with this foxy, super-intelligent chick, to find he was a short, chubby dude? that must of gone over really big...
LMAOLMAO! Oh my - that is just awful (but so funny, too!!) Can you imagine? Sheesh! And we thought we had problems!
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.
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
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...
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
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.
LMAO that made me laugh so hard. It was like.... perfect timing. I needed a good laugh!