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New doc, need opinions. HR
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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
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27 Comments Post a Comment
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Avatar_m_tn
sorry for posting again but for some reason it cut the title off. just wanted to make sure jmjm & HR saw this post along with anyone else that would be kind enough to comment on it. thanks again :-)
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Avatar_m_tn
Copy: he looked me dead in the eyes and "guranteed" that he will "cure" me of the HCV!
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Ask him to look you in the eye again and "guarantee" he won't screw you up with the treatment drugs. Your're F0, if I was in your shoes I'd grab a front row seat and watch the Vertex trial data roll in this year before doing anything. But you knew I'd say this. LOL. I'm sure other have their own takes. Any movement with that TCM fellow you mentioned?

Be well,

-- Jim
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Avatar_m_tn
Certainly take his offer to get a fibroscan but you can probably get it anyway as I believe the trial is still ongoing if you meet the rather lax requirments. The idea of treating and retreating and retreating again until you get it right -- as an F0 -- to acknowledges everything wrong with how some doctors view HCV. You know the expression -- the patient died but the operation was a success.

-- Jim
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Avatar_m_tn
BTW this kind of gung ho tx attitude is perfect for F3's and F's like I was before I treated. In fact, my doctor had a similar attitude and that's why I picked him. But again, I was a geno 1, F3. You're F0. Sorry for the fragmented posts -- multitasking while watching "American Idol" :)
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Avatar_m_tn
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)
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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


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Avatar_n_tn
my tx meds are coming in the mail on thursday, this time for sure. i am in NJ and would like to know if there's a good doc here, or jmjm you had said nyc. i don't know how much knowledge my doc has, but i want to make sure i have one that knows alot about this disease. the last time i went to my gastro, i had picked up a copy of my bx, just in case my dos didn't receive it, since they said they'd call when they got the results, but didn't. my doc says, no i don't have your results when i got there, then low and behold, she doublechecked and it was right on the front page of my med file, DAH! just want to know i have a good doc. if either one of you know a doc, i am in monmouth county, nj. thanks so much.
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Avatar_m_tn
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.
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Avatar_f_tn
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!

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Avatar_m_tn

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.

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96938_tn?1189803458
This is a heads-up to Beagle Bailey about Copyman's comment about taribavirin.  Beagle, this is the stuff you've been looking for - may be time to look into further....
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Avatar_m_tn
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?
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Avatar_m_tn
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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148987_tn?1287809526
My doc doesn't say 10 words when I see him. I sometimes wonder if he even speaks english.

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Avatar_dr_m_tn
Skepsis "Mutant strains beeing fit enough to replicate under selectional pressure like IFN and withstand therapy may or may not pre-exist before treatment - they don't have to be emerge during the critical phase of treatment necessarily. While competing with other IFN-susceptible quasispecies of the virus they could play a very subordinate role being a very marginal compound in the viral mix and become pre-dominant only through the IFN intervention"

This is a possible scenario - the preexistence of the later "relapse" variant even before tx. In this case tx is doomed to failure. And the helper drugs, that can only slow "new" evolution cannot protect against these. In this case a drug like Vertex, despite "early viral response to UND" could not protect from later relapse. The necessary " evolution" was preexistent......we can only wish that only a minority of cases will develop along these lines.

But hopefully, more complex mutants than the preexisting ones are necessary to develop when the need to escape from existing effective epitopes leads to variants that loose their capacity to turn off the intracellular antiviral mechanisms so the destruction of illegal RNA is accelerated..  
The rounds of adaptive cycles necessary to find tricky multiple adapting mutants might not supply enough mutants to find the relevant ones once the replication inhibitors are simultaneously at work.
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Avatar_m_tn
copy - Just playing devils advocate here but in my experience anyone who "guarantees" success in such a tough area is either selling something or building up his own ego.  I like his "we will stay in this till it is resolved" type approach - really like that, but the rest of it he could have saved and it makes me wonder why he would even have to bring all that up.  

Surely he cant "cure" everyone he sees.  So what happens to the folks who dont get cured, they have to hang in for years and then decide to quit themselves because he will never quit, even when you are hairless and sightless and skinless and breathless from the drugs? Then when you quit you feel like you failed?  I would be careful with the guarantees for sure.  IMHO.

Jim - thought you and some of the post treaters might be interested in an update on my testosterone tx and diet and exercise program.  Lost about half the weight I gained post tx and now, 8 or so months post, I can really say that I feel good and have felt good for some sustained time.  Now, I wake up every day feeling good and every now and then have a bad day.  However even the bad days arent so bad really.  I think that the testosterone and the good diet, vitamins, exercise and rest have helped me immensely.  

The way I have been feeling I would trade all of those miserable 20 months of treatment and post tx for any one of these days I am having now.  The change from misery to normalcy really happened quickly, like a fog lifting one day - the sides were just not there any more.  I am thinking clearly, sleeping better, remembering things incredibly well, have more patience and conifdence than I ever had and have good stamina considering my long layoff from physcial activity. My immune system seems to be able to ward off infections and colds better than ever - basically all systems are good to go and I feel like I am still improving in areas as well.  I really was starting to think there for a while that I would never feel ok again.  When I actively joined my recovery by taking better care of myself, I felt immediate improvement.  RTS
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Avatar_n_tn
thanks alot to both of you. i appreciate it. i will check them out to see who best fits my needs. thanks
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Avatar_n_tn
Unbelievable comeback. I am glad to have cought your post.  So, are you geared up for the "season?"
frijole
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Avatar_n_tn
Mutant strains beeing fit enough to replicate under selectional pressure like IFN and withstand therapy may or may not pre-exist before treatment - they don't have to be emerge during the critical phase of treatment necessarily. While competing with other IFN-susceptible quasispecies of the virus they could play a very subordinate role being a very marginal compound in the viral mix and become pre-dominant only through the IFN intervention. I read somewhere it can be a diagnostic challange to detect quasispecies in the minority with PCR-techniques.

Our clinical statistical commonplaces and concepts as EVR, RVR, SVR could prove as very simplistic when we try to describe the complex interactions and equilibrium between the co-evolution of genotypes, subtypes and the "environmental" pressures of therapies and host characteristic.

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Avatar_m_tn
Hey there Kath, I havent really been around here that much how are you doing?  I am certainly getting ready, actually looking forward to it if you can believe that.  Far cry from last year when I crawled through the season.  I was in my 40th month or so towards the 15th and I still cant believe I got through it.  Things are much better now that the buzzing in my head has subsided. LOL Have you figured out what you are doing yet?  As I recall you were visiting a new doc and considering some options.  Hope all is well for you.  Len.
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Avatar_m_tn
Sorry Jim just saw your question.  I was in the 100s before I started supplementation with Androgel.  I have been at it about a month now and I havent had any sides at all - unless feeling better and sleeping better and feeling calmer are a side.  Of course, it may just be a coincidence, chicken or the egg thing.  However, first I started testosterone therapy, then I began to feel better and then I decided to start my diet and exercise and then I really started to feel better.  So it could all be from the Androgel or maybe my sides have worn off by themselves.  For now I'm not changing a thing.  This stuff is very easy to take and my insurance pays for it so there appears to be no downside. I'll stay on it until I am harder than woodpecker lips or superman's kneecap - talking about my abs by the way.
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Avatar_dr_m_tn
I would start by ascertaining that the fibrosis status is indeed as good as the fibrosure indicates. Take him up on the offer to use Dr. A's machine.

Furthermore it would be a good idea now to do the single nucleotide polymorphism cirrhosis risk score, if your insurance will pay for it. This will add a better feel to the risk of progression, which will weigh in your decidion making re treating now or at a later time when HCV helper antivirals ( sorry Jim, I have to call them that) become available.

As far as we now understand it, there is constant evolution of the virus, especially away from T cell  attack ( and less from B cells) aimed at its critical epitopes. The T and B cell system in turn also evolves against the virus, by constant clonal selection and HCV specific stimulation - thats why it is called the "adaptive" arm.

If the immune pressure is artificially increased, by introducing IFN, the virus, with a certain speed and capacity to produce mutants will now begin adaptive evolution against this new pattern of antiviral mechanisms. Often by doing so, it looses another one of its survival attributes - to block the invaded cells RNA destroying machinery. HCV needs to find some mutants that can survive amidst all these antiviral conditions, so that when the pressure is off after tx, it can happliy cause a relapse.
The evolutionary power, or adaptive power or genomic power of this microorganism rests on its ability to generate enough offspring for long enough time to find, by trial and error, these "relapse capable" mutants. And it has to do it in a hurry within the short period of a few weeks until its genomic size is too decimated to come up with any "survival" ideas/capable mutants.

Thats where the "helper" drugs come in, that are just blocking, not "killing" antivirals. They reduce this evolutionary power in this critical time period so that the rescue mutant can never be invented. That is the concept, and it might work to a decent degree in spite of the ease with which the virus can shake off these antivirals in monotrials, by forming resistance in weeks, even days!

Thus, in short, it might well be worth the wait in your situation to see if this helper drug concept to prevent "invisible resistance to SOC" is indeed working as well as hoped.   This type of "proof of concept" evidence will quite soon emerge. You will have to read in between the lines of the announcements, however. Dont go for catchwords like "cure" but for realistic percentages and include the dropouts because of side effects in the evaluation. The recently here described discrepancy between the <10 iu reports and the actual individuals here that all or most have seen the famous "29" makes you think...why...? But "nuff' has been said about that below.

Meanwhile you do all you can to protect your liver using metabolic life style means ( like nutrition, weigth control,.) and other antifibrotic measures.

If I definitely had to choose one of the trials i would take the Polymerase inhibitor (Propably 200mg is the dose proposed?) However, not so much inhibitory power and always a chance to be a placebo...




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Avatar_dr_m_tn
Let us start a new thread on testosterone therapy in a little while  - it is an important and fundamental topic. Meanwhile, what where your testosterone values at some timepoints:

What needs to be measured is this;

Total testosterone. Much of this is tightly bound and has no direct effect on tissue receptors. The tightly bound is stuck to the Sex hormone binding globuline.

Free and loosely bound testosterone.This is available to tissue use. The loose part is bound to albumin.

Free ( direct) testosterone. It does the job.

You have these 3 values?

RTS : Before and after using androgel?
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Avatar_m_tn
I'll have to check prev lab results. If I'm missing any of the three, I'll arrange to have the tests taken and then get back. Thanks for the interest. While testosterone therapy has a certain appeal -- even more so after reading about RTS's experience -- I also am concerned about other sides and how they may affect existing health conditions such as BPH, psoriasis, high ldl and tri's, and low hdl. On the other hand, those washboard abs sound very appealing :)

-- Jim
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Avatar_m_tn
I have to check labs as well, they are at home and I am at work and working myself towards getting around to working - as soon as I read a couple more of these here posts. LOL  Thanks for the info.
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Avatar_m_tn
My pre-Androgel Testosterone was 255ng/dl and 42.8 free or
1.68%.  I tested around 3 months post but only got total which was 200ng/dl.
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Avatar_n_tn
Yes washboard abs are very appealing ;-)
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Avatar_dr_m_tn
Your total before testo-tx was at the lower limit,but - and this seems strange - your absolute free exceeded the upper limit of norm very substantially (ULN<26pg/ml). Who prescribed the testo?
What were the units behind your free testosterone value/ pg/ml?

Then after treatment you are now below start and below lower limit of norm.
Not too much sense in these findings. I always encourage to determine all three paramters, to get a clearer picture.

When was androgel applied relative to the blood draw? ( We will discuss why this matters and why total could be paradoxically lower and all these finer details once we rework the whole testosterone HRT isssue)
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