Dr. Ben Cecil

I've seen several posts about Dr. Cecil in Louisville being an expert with non-reponders or relapsers.

Two questions:

1.) Does anyone have experience with Dr. Cecil?

2.) If he treats off-label (increased frequency and/or dosages above FDA recomendations) then how does insurance pay?

Mike

[ral]

I just emailed him and got a response very quickly. He was very nice and I know he is really trying to help alot of people. His protocol is a bit more aggresive (aggressive) and he watches you a lot closer than most Dr's. I don't have the anwser to the insurance question but I may go and see him or have at least a phone consultation if my Dr does not go for more aggresive (aggressive) approach,

Good Luck

Bob L

[miked]

From previous posts I read that you're going through similar events.  Please let me know what information you gather and decisions made, I'll do the same.  Use this forum or exchange email address is OK with me.  Thanks for your help.  Mike

[missers]

Do you have a current e-mail address for Dr. Cecil?  I tried e-mailing him months ago and never got a response.

[stan1]

he has a website here: http://www.hepatitisdoctor.com

[miked]

***@****

I've written twice and it took 2-3 weeks for him to get back.  His office is insistant on a visit to Louisville, KY to begin the process.

Does anyone know about Dr. Cecil's treatment protocols and effectiveness?  His website speaks to PEGIntron, Pegasys and Infergen....nothing about off-label doseages.

[BostonGirl]

I e-mailed Dr. Cecil several weeks ago when I decided to tx and got some good information. His theory is hit hard and hit early. The earlier the viral response the better. He customizes the tx to the individual. He will do PCR's much earlier that the standard 12 week PCR.

I believe he told me at 3-4 weeks he does the first PCR > if you don't have to 2 log drop by the, he increases the interferon. He also recommends treating longer than 48 weeks for Geno 1A > high viral loads & cirrosis (cirrhosis). I am not sure how the insurance part plays into tx. All insurances are different. Hope this helps, Sue

[Tallblonde]

Does Dr. Cecil charge anything for providing recommendations via e-mail?  This thread motivated me to do a Google search on him and I was delighted to learn that he's only about 3 hours from where I live.  I'm already traveling that far to see my idiot GI at the Cleveland Clinic.

I like the idea of a GI who customizes treatment (the one-size-fits-all approach never made sense to me).  I'd love to e-mail him first and then visit him later.

Susan

[cuteus]

there was no fee when he answered my email. it took him a while to answer, though.

[Tallblonde]

It astounds me that there's a HepC doctor out there who's willing to answer questions for free.  Heck, my Cleveland Clinic doc gets paid well to see me and I'm lucky if he gives me a straight answer to half the questions on my list.  I knew that I'd eventually find someone better to replace him. Perhaps Dr. Cecil is what I've been looking for.

Susan

[miked]

Dr. Cecil limits the amount of information he gives out without an office consultation ($200).  Afterwards office visits are $60.  I can't blame him....I don't work for free either.

He's considered out-of-network for my insurance that will require a 30% co-pay plus trips to Louisville out of pocket.  Fair enough, and what I'm trying to understand is does he have a special talent and/or recipe for hard-to-treat type people.

[BostonGirl]

Dr. Cecil does not charge for e-mail questions. I've had three replies from him all within 1-2 weeks from the time I sent them.

Yes, it makes total sense to individualize tx. My doctor is also willing to check my viral load early in the tx and give me more interferon ( if needed )

We discussed this possiblitiy > providing my sides are not too bad. She did say that because I'm fairly small, she is not confortable with giving me more than 180 of Pegasus, but if I decide to up the dose, she will work with me. That is a good doctor.

[honey1616]

I went to his website where you can ask questions there.  I checked back ever few days until he answered,,,took about a week.  I didn't even know you could send email but his questions answered at his site is totally free.  I do like him and like the way he does individulize treatment per patient.  He seems like a really caring person that is wanting to help anyways he can.  If I lived near there,,,I would go to him just for his knowledge of tx and the disease..

[ral]

I know I offered him something adn he did not ask for anything. He also has a prison and help program for Vets. My feeling he really, really wants to help us and will do anything if we are willing and our bodies and mind can tolerate it.

Miked my email address is ***@**** if you or anyone else wants to email me. I sent him all of my titer and blood tests over the course of 18 months of tx. I am not ready to lay down yet. I will meet with my GI early Feb and discuss his postion. I sent him all of Cecils info plus research on using more interferon etc. for longer.

Take Care

Bob L

[carolhab]

ya know - I wondered early on how come we all get the same dose regardless of our size, genotype, viral load, etc. This string confirms my thoughts about customizing tx and adjusting according to the variable above and response during tx.  This doc sounds really on top of things.. god blesss him....
sammy

[BostonGirl]

Hey Susan;
         That is so cool about you being close to Dr. Cecil. If you  are feeling well and your biopsy is good, you will probably want to wait. ( I'm sure you know that ) Although I am very curious as to what he will say about your cryo. Please keep us posted. OK.

Yes, I have a very caring, competant doctor. I really like the nurse in charge of the treatment clinc too. She's very caring & compassionate. They all are extremely professional. Good luck with your second opinion. Sue

[BostonGirl]

Hi Susan;
          This has nothing to do with Dr. Cecil, but I was wondering about the biopsy. You mentioned in another thread that there's a standard size which is optimal for an accurate reading? How big of a specimen are you talking about?

I have always wondered if they had made a mistake with my biopsy. I have very little damage ( 27 years?) But have developed some pretty bad sx. Anyway, it sparked my curiousity. Take Care, Sue

[Tallblonde]

What a blessing it is to have a competent, caring doctor.  I haven't been so lucky.  I've consulted two in the past year; both are considered the top HCV guys at their respective institutions (Ohio State University Medical Center and Cleveland Clinic), yet I would never feel comfortable with either of them overseeing my treatment.  

I'm so excited about Dr. Cecil and his relative proximity to where I live.  I plan to call his office on Monday to schedule an appointment.  I'll let you and the rest of the gang here know what he's like in person.  He sounds wonderful.

Susan

[BostonGirl]

Hi Susan;
         Thanks for sharing this information on the biopsy. I've always wondered about the accuracy of it. I know they say it's very accurate, but I'm not so sure. Some people have shared their stories on other BB about their biopsies and how way off base they were. Makes me wonder.

Example > one guy got diagnosed with stage 2/ grade 2. Well, just a few months after his gold standard biopsy > he had horrible stomach bleeds, almost died twice. Got diagnosed with cirrosis (cirrhosis) and now needs a shunt for his 9 month pregnant stomach. Stage 2? I don't think so.

Another lady got diagnosed with stage 1,mild fibrosis. She did chinese meds for a few years, felt really good, no alcohol, lots of supplements. Then had another biopsy about 5 years later > was stage 3/4 bridging fibrosis.

So, I don't put a lot of faith in the biopsy. I'm sure these stories are not the norm for most people and that biopsies are probably 80-90% accurate. But, it just goes to show you that dcotors are human and they can and will misdiagnose.

After what you had shared about your doc, I would definately find a new Hepatologist. I hope things go well with Dr. Cecil. Keep me posted. Sue

[Tallblonde]

Gosh, wait a minute....I just re-read what I posted above and realized that 15 mm. isn't the optimal size; 25 mm. or more is.  My specimen was only 7.5 mm.  In this excerpt, my doofus doctor writes  "specimen size is critical" and yet he tries to pooh-pooh my concerns about a 7.5 mm sample.  It's maddening!!

Susan

[Tallblonde]

Sue,

Go to this page:

http://www.clevelandclinicmeded.com/hcv/print/pbiopsy.htm

Ironically, it's from the Cleveland Clinic and it was written by my GI!!  Here's an excerpt that says that the optimum size should be 15 mm.  Mine was half that.  GRRRRRR!!

"The amount of liver tissue obtained by needle biopsy provides tissue that represents no more than 1/30,000 of the liver volume. It is apparent that such a small sample will only represent the state of the liver for processes that are uniformly distributed. Several studies indicate that fibrosis may not be uniformly represented in each biopsy specimen. Postmortem studies in cirrhotics indicate that known cirrhosis will often be absent in a single core of liver tissue and that up to three specimens may be needed.

A recent study of "virtual biopsy specimens" confirmed that the amount of liver tissue available for the pathologist to review is critical. A biopsy length of 15 mm was 65% accurate in scoring the degree of fibrosis; a biopsy length of 25 mm was 75% accurate. Specimens longer than 15 mm that contain six or more portal areas correlate better with biochemical surrogate markers of fibrosis than do smaller specimens.

Most studies have ignored the impact of the width of the biopsy specimen. Colloredo et al have shown that the use of fine needles (internal diameter; 1 mm) impedes accurate staging of fibrosis, probably because of the decreased number of portal areas available in such specimens. Thus, both the length and the width of the biopsy specimen have been shown to be important in reducing diagnostic error. Many have suggested that five to eleven portal areas should be included before the pathologist can stage HCV-infected livers accurately. A single core of liver tissue obtained with a "biopsy gun" with a needle notch length of 1.7 cm may be expected to result in significant under reporting of fibrosis. An excellent summary is available."

[olittle1]

I was treated by Dr Cecil in 2003 when he had an office in Detroit. He is probably the #1 advocate for the Hep C sufferer in the country. He is not afraid to confront the big "Pharma hype", or take on the VA and Federal prison administrations regarding their negect of Hepatitis C patients. His treatment is tailored to the individual, the symptoms that are present and the biopsy and blood chemistry, and based on his extensive experience and current research. In my case I relapsed 2 months after tx and it was determined shortly after that the leaking blood vessels in my eye were caused by interferon. Dr Cecil advised that I wait and not do tx again because of quality of life issues (risk of blindness if retreated) and a good biopsy result. I recommend him highly.  And there are no guarantees!