Copy and Pasted: VERY good feedback to a friend of mine from a Liver Specialist

"There are several studies now looking at shorter treatment period for genotypes 2 and 3. The largest of these studies is called the "ACCELERATE trial", a large, randomized clinical trial that included a total of 1,469 patients from eight countries, which was first presented in Vienna a couple of years ago and published in the New England Journal of Medicine in 2007. Although several other important studies have been conducted since, the ACCELERATE trial remains the most important publication so far regarding duration of treatment for genotypes 2 and 3. Patients were randomized to receive Pegasys 180 mcg once weekly plus Copegus (ribavirin) 800 mg daily for either 16 or 24 weeks, followed by 24 weeks of treatment-free follow-up.
In summary, the results of this study indicate that 24 weeks of therapy is more effective than 16 weeks for patients infected with genotypes 2 and 3. The additional 8 weeks of therapy seems to increase the chance of achieving SVR and also to decrease the rate of relapse following the end of treatment.
As far as numbers go, your's is pretty much the best case scenario (i.e. genotype 2/3, very low VL, and RVR). I'm attaching a recent article published in the Journal of Viral Hepatitis which is a review on this subject in an "expert opinion" format. If you like numbers, be my guest.
If you're asking my opinion, I can tell you what I would do if I were in your shoes. And the answer is I would do everything I could possibly do in order to complete the 24 weeks of therapy, no matter how hard the treatment is.

Your attitude about the treatment and its effects on your body is going to be essential for success in this. And this is not cheap psychology, because I know that wouldn't work for you. I know this whole situation stormed into your life as a very unpleasant and unfortunate surprise, but I just want you to see things, and understand things, as they really are.

When you talk about "all these horrible drugs..." they've been injecting into your body every week, and talk about them as some kind of toxic poison, I'm not sure you're being fair. I'm sure you know what interferon is, but let me give you my perspective. Interferon has not been created by the hands and minds of men. Interferon is a cytokine - one of the most potent inflammatory mediators we know, which regulates several aspects of our immune response and is essential for our defense agains all kinds of organisms, including viruses. It is a strongly preserved molecule from an evolutionary perspective, being present in most vertebrates. Our lives would probably not be possible without it. The forces of nature forged this intricate molecule millions of years ago and have preserved it since. Interferon was "discovered" somewhat by accident (as most great discoveries) by two investigators from the National Institute for Medical Research in London back in 1957. But the full therapeutic potential of this substance did not become apparent until very recently.

When I started medical school, in 1997, I remember seeing patients in the hepatology clinic who had viral hepatitis and discussing with my colleagues how unfortunate it was that patients with non-A, non-B hepatitis (the hepatitis C virus was isolated only a few years earlier, at the CDC, by the way) had absolutely no treatment options. It killed me to see those healthy, productive people, otherwise full of life, having to cope with a disease that just could not be treated. But that did not last long. I remember this bright young hepatology professor at my medical school pulling me aside one day in the cafeteria to tell me about this new international multicentric clinical trial which was testing a very promising new drug to treat hepatitis C - a drug called InterMune-Infergen (interferon alpha). I could just see the excitement in his eyes, and how contagious it was! That was the very first medical project I was involved with, and the reason why I became what I am today. When I think of Interferon, I think about a miracle made possible by science. It warms my heart, fills me with passion, and makes me want to come to work every day.

It's interesting that in the same phrase you mention "these horrible drugs", you also talk about a "stupid virus". The stupid virus you speak of has plagued mankind for thousands of years, probably dating back to pre-civilization. This stupid virus, against all odds, has found ways to adapt, mutate, and survive within the heavily protected human body and to infect other organisms, spreading to all corners of the world colonized by human race, in an almost unprecedented way. It is interesting to think that, if the mode of transmission of hepatitis C is pretty much exclusively by blood transfusions, needles etc, how was it able to survive as a species before modern times (before blood tranfusions, injectable drugs, surgical procedure etc even existed)? Some speculate that there is one answer: war. Through wounds that occured in battle, warriors from all cultures would pass on the virus to their surviving enemies. A virus that only exists thanks to our bellicose, unforgiving nature? our ambition? our thirst for blood? How ironic that is! Nature has such a dark sense of humor, dont' you think? There are many terms that I could use to describe this virus; "stupid" is not one of them.
Regardless of its origin, there is a constant battle between our own inner warriors (the cells of the immune system) and the this allien enemy race. Most of the time, our troops are able to contain the enemy to a few sanctuaries, but are unable to erradicate it. I find it interesting how stories repeat themselves at so many levels of existence. Few resisting against many, hiding behind dirty strategies and guerrilla warfare. I like to think of Interferon as some sort of Holy nectar capable of transforming regular soldiers into Spartan warriors. Fierce fighters on steroids! A substance designed by the creator himself and stolen by men through reverse engineering.

Most of the side effects that you feel are due to this war that is going on inside of you day and night, at this very moment. Your body fighting off the intruders. An army of enemies being destroyed in an epic war of a microscopic universe within your veins.  You don't feel any "side effects", what you feel is the heat of battle. And that should put a smile on your face. Every day."

[meakea]

Wow!  Great perspective on both the disease and the drug!  This is a doctor I would like to meet - seriously!

Thanks for sharing this!

[BklynBoy81]

That was very good to read!! Thanks!!

[Trinity4]

"When I think of Interferon, I think about a miracle made possible by science. It warms my heart, fills me with passion, and makes me want to come to work every day."

Granite, that was very well written.  I get it.  However, I wonder if his heart would be warm and full of passion and he would want to come to work everyday if he were taking interferon.

[jmjm530]

I like to think of Interferon as some sort of Holy nectar capable of transforming regular soldiers into Spartan warriors
---------------
In all due respect, I don't think this writer ever injected interferon into his own body :)

But more to the point, interferon is less of a "holy nectar" transforming soldiers into Spartan Warriors but more of a "holy hell" (for some of us) using a sledgehammer because one's tool kit is missing a ballpean hammer. In other words, interferon, unlike the newer PIs (closer to the ballpean hammer) does not target the virus but targets the entire immune system with potential negative consequences beyond what we are trying to accomplish.

That said, I do not necessarily disagree with his conclusion on going or the 24, especially in your case, as you seem to be tolerating treatment quite well. Still, it is only one study stated, and if I was going to make the decision myself I would want to review the entirety of the literature.

So, for others, especially if having trouble with treatment and/or complications, the shorter course should be considered as an option if you fit the criteria. These, or very similar words were used, in one of the studies that suggested the full course, and in fact it may be the study that is cited here.

FWIW, by memory,  we have had somewhere around 6-12 people who have taken the shorter course and I don't remember one who did not SVR.

-- Jim

[copyman]

LOL, Well said. I was thinking the same thing. I would like to hear his opinion after about 6 weeks on SOC drugs :-) How warm his heart & rest of body would be as he shakes uncontrollably 4 hrs after that first shot :-)

All kidding aside he does sound like a very good and up to date doctor and I would have no problem treating with someone like him.

[granitekonig]

All respect due to your posts, but don't you think this Dr. is WELL aware of the side effects these drugs cause? He is very intimately aware of the suffering both through his formal education and through meeting an speaking with his patients. He doesn't have Hep and isn't taking the medicine....I get that. And I know no one knows exactly what we go through unless they go through it. I get that, too.

But you guys are makng him seem completely ignorant of what the medicine does, and I think that's completely false. He is simply injecting his postive and educated perspective on the situation.

[Rockerforlife]

Interferon is not a poision...never was....like the article says...side effects are the not the direct cause of the drugs....its the fight goin on within the cells

[BklynBoy81]

LOL I would like to hear his opinion after about 6 weeks on SOC drugs :-) How warm his heart & rest of body would be as he shakes uncontrollably 4 hrs after that first shot :-)
LOL hahaah

I defenitly dont feel like a spartan soldier...

Trinity your very much right...

[jmjm530]

All respect due to your posts, but don't you think this Dr. is WELL aware of the side effects these drugs cause?
-----------
In all respect, actually no I don't believe that most docs understand fully the side effects of these drugs because they look at patients through a professional prism, partly of their own making and partly of the patients -- and given their investment in treating large numbers of patients, probably this is necessary to survive. As to patient distortion, I never disclosed the extent of my side effects during treatment for fear of being pulled off the drugs. Many here have said similar. I also note that this Doctor started med school in 1997. So, assuming he's a specialist, he probably is practicing no more than five years. Just an observation.

-- Jim

[Rockerforlife]

i still have no sides...and i look like the day i started...no muscle loss at all..but my REDS and WHITES are low....im not bragging but i feel excellent still...and im goin tru a problem with my empoyer....just call me super newfie

[Trinity4]

I don't see where any of us seemingly indicated the man was ignorant.  To the contrary, each of us praised him and in our own way and gave feedback on how we viewed his perceptions.  Again, I think it was very well written but I don't share his passion or enthusiasms.
Trin

[mikesimon]

I am very impressed that a doctor would take the time to write such a letter to a patient. Unless this is a form letter sent to every patient this doctor is very atypical - he/she really seems to care and that's a good thing.
Mike

[meakea]

In the 70's I worked at the Mayo Clinic as a medical secretary and I was part of the "float pool" that would cover for other secretaries who were out on maternity leave, etc.  During that time, I worked with doctors from just about every department at Mayo and I usually worked for the Heads of the Departments - the ones that were the best of the best.  Each and every one of them were "very into their work".  They were very aware of the suffering different diseases or treatments caused their patients and they focused on trying to find ways to either cure the disease or find a better treatment.  Being aware of suffering and death and dying is what drove them to help find better ways.  I don't believe for a second that one has to take a treatment to know how much a patient suffers.  The type of doctors I'm referring to see or read of suffering every day.

Though I don't know much at all about this particular doctor, from the tone of the information he cared to share in his letter, I believe he probably falls into the category of knowing full well both sides of the coin of this treatment and he was trying to give his patient a brighter attitude to help bring him through treatment.  Just my take.

When I read the post, it gave me a boost and it meant a lot to me, especially since I'm at the halfway doldrum point in my tx.

[jmjm530]

I agree with Trinity, no one suggested the man ignorant, but that doesn't mean we share his perceptions and passions, and indeed many of us are equally as passionate about our perceptions :)  The whole idea of how the medical community perceives/views and deals with side effects -- both long and short term -- has been discussed here at length in the past.

[GreatBird]

I enjoyed the letter very much. I enjoyed the spin and hearing of the passion he felt for his subject. I liked his conjecture on how the disease would have been spread before transfusions and needles. I thought it was very poetic, in fact.

Since my first shot I've felt there's a war raging inside (and they're marching through my tummy dragging their spears and wearing dirty shoes with spurs or something). I just wish these warriors could take a day or two off. Wave a white flag, call a momentary truce, and let me have a day or two wihtout any sx.

/whining

[charm27]

A doctor took the time out to do this?? Thats amazing to me. I have never seen a doctor do this.

But then I dont know many doctors.

I was touched by his caring to do so.


Charm

[portann]

I must say that in all my years, I've never encountered a specialist writing a personal letter to a patient, let alone such a long one. I'm intrigued.

Last I heard, specialists didn't have time to make it home for dinner with their kids.

[comeagain]

Thx for posting I really like that guy (the doc) his attitude and do you know what i also think Dr Dieterish would like the letter if he saw it.

And just to inform you how doesnt now Dr Dieterish has been treating twice on soc!!

I came to think of the two espials in the bible Joshua and Caleb the only ones that wasn´t afraid when Israel was about to go in and take the Holy Land.

That could be this doc and doctor D lol very encourating indeed thx once again GK.

ca

[geterdone]

I liked it it shows compassion. He may not have treated but there are those here now who have not but do try understanding both side of the fence. One being one who speaks of IR and the complications of treatment because believe it or not the demographics suggest the age group that is about to start treating has some form of this diabetes which will in fact divert some from the path of the journey.

jasper

[hepcD]

Great post ! I wish all doctors had that perky go get em attitude. It reminds me of a story my father once told me. He told me that a doctor was doing a study involving twins. One twin was a happy go lucky kid and the other twin was some what depressed and not nearly as happy as his sibling. They took the unhappy twin and put him in front of a door and asked him to open the door and look inside. He agrees and opens the door. What he sees is a room full of horse shat . The doctor then ask the boy. What are you think right now. The boy says with a frown. I think you are going to make me clean this mess up. The doctor then put the happier twin in front of the same door and ask him to open it. He agrees and opens the door. With great amazement the boy starts digging in the horse shat. The doctor ask him what are you thinking right now. The boy replies WOW ! with this much horse shat in here . There has to be a PONY in there some where!

[Isobella]

Nice post.  I enjoyed reading his perspective. I agree with Meakea.....the tunnel gets dark in the middle and it gave me a boost to read this.  Thanks.

hepcD.....oh, so true=)  Lemons and lemonaide, baby!!

[willing]

interesting comments, thanks for posting. I have to agree with Mike that I'm utterly amazed a Dr. would take the time to write at such length and depth (and with a poetic twist  at that!)
Indeed, the virus is anything but stupid; the one tactical mistake it *might* have made is to be too picky about its host species.

Some details.

The 'expert opinion' review he's referring to is likely:
http://www.ncbi.nlm.nih.gov/pubmed/18761607

HCV was not first identified at the CDC but at Chiron in May '88. There was a nasty patent fight between Chiron (now owned by Novartis) and the gov. because a CDC scientist, Dan Bradley, collaborated on the find (settled in '94).

A good summary on ACCELERATE and other recent studies such as Mangia'05 and Dalgard'04 regarding G2/G3 dosing and duration is Jacobson'09:
"Optimal dose of peginterferon and ribavirin for treatment of chronic hepatitis C."
http://www.ncbi.nlm.nih.gov/pubmed/18637069

Here's the closing paragraph of that section of the article

"Is there a potential advantage of therapy longer than 24 weeks for some patients? For patients without RVR shorter duration than 24 weeks is clearly suboptimal. However, even standard 24-week treatment is unsatisfactory, with SVR rates of 50–77% [47,49,52], raising a question of the potential merits of an extended course of therapy beyond 24 weeks in this not-so-easy to treat subgroup. Willems et al. [59] retrospectively examined available data on SVR and relapse rates following PEG-IFN alfa-2a plus RBV in genotype 2 and 3 patients who did not achieve RVR from two large clinical trials [5,7]. SVR rates were, in fact, higher in patients receiving 48 weeks and higher dose RBV (1000/1200 mg daily) compared to those treated for 24 weeks, and 48 weeks and FD RBV (800 mg daily) (76%vs 65–67%). The relapse rate was lower with 48 weeks of therapy (4–13%vs 24–26%), and lowest in those patients treated for 48 weeks with RBV 1000/1200 mg daily. A randomized open-label study is planned to evaluate effects of 24 vs 48 weeks of combination therapy with PEG-IFN alfa-2a plus RBV on SVR in patients with HCV genotype 2 or 3 who do not achieve RVR [60]."

[Deb_c430]

A great letter, shows humanity and kindness.  Nice to see,

Willing thank you also for some of the clarification.  Nice to see also!

[fretboard]

That's a very motivating letter and I can certainly respect the good doctors intention.  On the other hand there are so many doctors who truly have no idea what inteferon is capable of putting the human body through.  Let alone the mental anguish that it puts some of us thru while undergoing tx.  The objective of txing HepC is to clear the virus and not to create other health problems that could be equally as bad.  The good doctor misses the boat on this fact with a slick as mucos, rah, rah, rah.  I appreciate what he has done for his patient and I hope the patient was able to go thru tx without any additional health problems.  You'll have to excuse me, but I just can't appreciate any opinion from anyone on the subject of inteferon.  Especially since they have never used it themselves.  Personally I have run into a couple of doctors like this who would rather have you focus on the positive and avoid the negative.  A patient needs to look at the bigger picture before making up their mind whether or not they want to tx and they need to see the good, the bad and the ugly.  Not just a pretty picture that someone has drawn to get their patient through treatment.  I think he did a good thing for his patient, but that's as far as it goes.  

[fretboard]

Yes, I think this is a link to that study which is dated as November 2006.  good read


http://www.hepcassoc.org/news/article130.html

[fretboard]

sorry about that, wrong link.  This is the right one.


http://infectious-diseases.jwatch.org/cgi/content/full/2007/711/2

[orleans]

It's not the interferon that makes us feel SO BAD but the ribaviron. Take it from someone that has ( and IS) done it both ways. jerry

[fretboard]

Like all things related to HepC, I think that depends on who you are and how you take to these drugs.  Anyways, hope you're doing well with your ribavirin situation and the rest of your tx.


fret

[Trinity4]

Jerry,

Interferon kicks my butt.  Riba didn't give me the fevers, fatigue, low whites and platelets.  After every injection for the first 3 months, sick as a dog.  Other than my hair falling out, hgb a little low and a slight rash on my back, haven't had any problems with the riba.  Lucky not to have the riba rage or brain fog too bad either.  Not to say it hasn't contributed to the overall effects of tx, but interferon has definately been the culprit for me.
Trin