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Avatar universal

New doc, need opinions. HR

i saw a new doc today for a 2nd opinion and alot closer to home here in NJ. he was great and is very close with all the top docs on the east coast, including playing golf often with dr "A" from boston. i was very pleased with this new doc and he said something to me which almost made me fall off the exam table, he looked me dead in the eyes and "guranteed" that he will "cure" me of the HCV! he said no other doc will tell you this but i will. he said if "we" dont beat it the first time then the 2nd or 3rd time, but that he will stay in the fight  with me until "we" beat it. and i was more susprised when i found out his office is involved with several clinical trials. he offered to send me to boston for a fibroscan with dr A if i wanted it. he had the study nurse come in and talk to me about joining one of the trials. i was basically offered a choice of 3 trials, Taribavirin, NM283 or another one with the standard dose of the peg doubled per week and/or riba 1400 or 1600 per day. of course he gave me the other 2 options of waiting for a few years or tx with present combo.  i wish i could get into vx-950 but the one coming up is for non-responders only. he said the FDA will make all drugs in trials have a "non" responder trial before approval. anyway i guess my question is what some of your opinions are on these trials offered to me and would you try any of them and if so which one? some of my stats follow. thanks for your input

49/m
geno 1a
4 million vl
fibrosure F0 (0 fibrosis), A1 (minimal activity)
labs & US normal except ALT slightly elevated
27 Responses
Avatar universal
Aquarius, dr carroll leevy, he is in newark. he was my first doc and is a very aggressive treater but to far for me to travel.
Avatar universal
Copyman look at Susan400 who has treated like SEVEN times.  I don't care how well meaning your doctor is...he cannot guarantee you that he will "cure" you.  No way.  It's a nice thought but...just ask someone like Susan who has done EVERYTHING possible and still..............

As an F0 if I was you I would wait instead of doing the meds and see what happens with not only Vertex but the others.

You really aren't in a rush unless you want to be and remember there is NO guarantee.  He can be the nicest man in the world and talk your ear off but that piece of advice is just not right.

I do love his "fight" approach though!

Avatar universal

Pretty interesting! Hope I don't get in trouble for copying part of the article here, but I live dangerously. FInally something GOOD to come of fat!

Here's the link http://www.yomiuri.co.jp/

Liver Cell Created from Subcutaneous Fat

The Yomiuri Shimbun

A team of doctors has succeeded in creating a hepatic cell out of subcutaneous fat, a development that might lead to a regenerative medicine technique that would enable patients with hepatitis or cirrhosis to have their livers repaired.

More than 3.5 million people in Japan suffer from the diseases, and clinical application of the team's findings is being eyed for sometime in the next few years.

According to the National Cancer Center Research Institute and the International Medical Center of Japan, the doctors used a cell called mesenchymal stem cell that accounts for about 10 percent of the subcutaneous fat tissue of a human body, believing the cell has the potential to change into different cells that make up various organs or other tissues. In the research, five grams of subcutaneous fat was taken from each of seven patients who underwent abdominal surgery at the International Medical Center of Japan, and the mesenchymal stem cells were extracted from the fat tissues.

The researchers added three types of proteins that prompt growth to the stem cells, and incubated them for about 40 days.

As a result, nearly all cells turned into hepatic cells, according to the doctors.

At least 14 types of proteins, including albumin--one of the major components of blood--and drug-metabolizing enzyme, that are known to be synthesized only in the human liver, were detected in the incubated cells, the doctors said. Then the researchers injected about 1 million incubated cells into lab mice that were artificially made to develop liver malfunctions.

The ammonia level in the mice, which had been rising before injection, dropped to a normal level in one day, the doctors said.

Regenerated subcutaneous fat cells have already been used in some clinical practices such as breast reconstruction, but this is the first time in the world that more than one function for the human liver has been observed in the regenerated cells, according to the research team.

While the most highlighted technique in regenerative medicine is embryo-stem cell development, it has been criticized because it utilizes fertilized egg cells.

The use of subcutaneous fat cells, on the other hand, faces fewer obstacles in terms of life ethics, and are advantageous because they can be taken from patients' own bodies to eliminate the risk of rejection, the doctors said.

Takahiro Ochiya, head of the Section for Studies on Metastasis Research at the National Cancer Center Research Institute, who led the team of researchers, said: "I would give 60 out of 100 if I were to grade the hepatic cells we made from subcutaneous fat for their performance. They barely pass the test at the moment, but we would like to go on working to make cells that perform like real hepatic cells."

Yasuyuki Sakai, associate professor of the Center for Disease Biology and Integrative Medicine at the University of Tokyo, hailed the team's findings as a "remarkable achievement," but pointed out that several issues need to be addressed before clinical application. "To achieve a certain level of therapeutic effect from a patient with liver disease, more than 10 billion hepatic cells have to be implanted into his or her liver. To reach the goal of clinical application, researchers must develop a technique to more efficiently make hepatic cells from a large amount of subcutaneous fat," Sakai said.

Avatar universal
Copy,

Forgot you haven't had a needle biopsy and are basing your FO solely on Fibrosure? If so, def get scan with Dr.A, but why not simply do a needle biopsy as a geno 1? Personally, I'd try for both. In any event, consensus seems to be to wait for better treatments, assuming you really have little or no liver damage while monitoring liver. I somewhat disagree with others and do feel that a doctor can right now pretty much "guarantee" SVR in at least 9 out of 10 patients if you give him 3 or 4 shots and don't hold him to SOC. But again, at what cost?

HR,

HR: when HCV helper antivirals ( sorry Jim, I have to call them that)
--------------
You can turn a phrase :) Of course, this is all to be seen, and I think you said once before that you hope you are wrong in this regards. BTW would appreciate your take on RTS' experience with supplemental testosterone post treatment. Was thinking about it myself for more energy,etc, but my levels are normal (59 years old) and RTS's I believe were low. I know there's a controversy about supplemental teststerone for those in normal range.

RTS,

Absolutely wonderufl things are working out. Can you tell us again what your tesosterone was prior to treatment, what supplementation you're taking and what you testosterone is now that you're taking supplementation. Also, any adverse sides from the thereapy?

Aquarius,

Two excellent doctors in NYC you might consult with: Dr. D. and Dr. J. Dr. J. does not accept insurance and a single consult costs around $600 as reported by one member here. You also might consider a trip to Boston to see Dr. A. who has a Fibroscan machine:  
http://tinyurl.com/2axrsd
http://www.hepccenter.org/jacobson.php
http://bidmc.harvard.edu/display.asp?leaf_id=11676


###
Avatar universal
thanks for responding. he did say one of the options was to wait with close monitoring of my liver until better meds come out ( i forgot to ask how long he thought before new meds would hit the market). so far i have read up on the  Taribavirin and this does not look that much better then ribavirin except with much less anemia but svr about the same. as  geno 1a my main objecttive is to treat less time with goods odds of svr, and i think with less tx time, there are less post tx problems. what scares me the most is doing 48 weeks of tx with only a 50/50 chance svr, maybe relapsing and being worse off then iam right now, plus the possibility of living with post problems for the rest of my life. would i be able to get the "scan" without a bx? since my doc knows him real well could he ask him to make an exception if bx needed.

i never followed up with that TCM doc but if i do i will let you know unless you want the link for his website?
Avatar universal
While some may disagree, I still see interferon as the big problem longer term, not the riba. Current tx for geno 1's tends to be 48 weeks, shorter peg exposure in the majority or arms in the protease inhibitor trials. I agree less interferon exposure, the less chance of longer term sides.

Then there's the protease "cocktail" that is being talked about where no Peg or riba is used.  HR has expressed doubts it will work but I have read others are optimistic. This would potentially be trialed further down the road.

As to timetables, Vertex probably to market before 2010 if studies pan out but I believe there will be more tx naive trial opportunites before then if current trials are succesful.

In your case, I just don't see the rush to be a guinea pig in any trial when you can afford to wait and see actual results. Yes, biopsy required for Fibroscan trial but you may be able to get a scan as a private patient with your doctor's referral.

Sure, send me the link to the TCM site. I'm still pondering going, but a part of me wants to stay away from any type of doctor, drug, treatment, etc, at least for awhile longer. Had my quota of all that the past couple of years and also don't want to rock the boat too much until the one year post tx mark which is in another couple of months.

-- Jim
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