Things Not To Say to Someone Who Just Completed Hepatitis C Treatment

Now What?

Now What?

  • You were in treatment?  I just thought you were aging badly.
  • Now make sure you don’t get it again (my personal favorite)
  • How do you celebrate without alcohol?
  • How can you be sure you are cured? I’ve heard it comes back.
  • I heard of a guy that went two years then his liver blew up.
  • Some guy finished treatment then killed himself.
  • Can you talk to my husband?  He won’t quit drinking and drugging.
  • I saw a website that says St John’s Wort works better.
  • Want to volunteer at the hospice?
  • Too bad you have to give up your handicap placard.
  • Glad you finished.  Maybe you won’t be such a moody A Hole now.
  • You should have waited for newer treatments.  They are better.
  • Now, shut up about your symptoms.
  • Good, now get off your butt and do something.
  • Now what?

Hepatitis C: Been A Long Time Leaving But’ll Be A Long Time Gone

My dad was a Waylon Jennings man.  I think he liked the big FU that Waylon projected.  I paraphrase Waylon.  “I been a long time leaving Hepatitis C, but I’ll be a long time gone”

So after three years of treatment-plus the maybe five years of falling apart, I get a voice mail that says “Hi Deb, this is the message you’ve been waiting for.  Still no detectable virus, so you’re cured.  See you in 24 weeks”.  Glad I go back in 24 weeks, so I can ween myself off of the Texas Medical Center.  This follow-up lasts a couple of years.  Now what?  I don’t care.  Today I am neither a patient nor a scientist.

Yep, I’m doing this in Kerala

I can do anything I want.  I will start with a trip to India this week. No shit.  BTW I tried to say this without the word shit, but it didn’t sound like me.  Waylon and India.  That’s all I got to say for now.

http://www.biography.com/people/waylon-jennings-9354063

www.natmystic.com

Hepatitis C Treatment Management: What would Mamaw Do? WWMD?

Mamaw and Papaw’s Wedding Day 1916 Livingston KY

The world of Hepatitis C treatment  is more than taking drugs as scheduled and hoping for virus death.  The bigger part is keeping  your body, mind and soul with you.

  • Diarrhea?  Water and Lomotil I guess, that was never my problem
  • Nausea?  Water, saltines and Phenergan
  • Constipation?  Water and stool softener.  Even the name is too gross.  Kinda like mud-butt
  • Mouth Sores?  Water then swish and spit Mylanta.  Happy to spit
  • Food taste like pennies? Water and floss, floss, floss, brush, brush, brush.  Still doesn’t help
  • Flu symptoms for six months?  Water then alternate Tylenol and Advil for six months.  Exercise: yeah, right
  • Rash? Benadryl oral and topical.  Maybe hydrocortisone/vaseline
  • Insomnia?  Ambien if you are lucky.  Benadryl if you are unlucky, it adds to constipation and taste of pennies.  Don’t drink water before bed
  • Depression? Water and SSRIs/SNRIs/antipsychotics/and on-and-on in couplets
  • Too tired to work?   Adderall if  the shaking won’t vibrate your loose screws
  • Can’t go on?  Cry really hard, take Advil, drink water and go on.

My Mamaw had eleven children in Eastern Kentucky  starting in 1917.  There was no doctor, drug store or money.  She lost two baby boys, one to the Spanish Flu.  When she came out of delirium, baby Bentley was already buried.

If an artery spurted, she applied coal soot.  Got a burn?  First well water (cold) then let egg white dry on burn or apply a slice of onion.  Step on a nail?  Clean and soak with turpentine.   Pneumonia?  Inhale kerosene (dosing was tough) through a moist cloth and put a mustard plaster on your chest.  It will kill you or cure you.  I never witnessed this  one.  Croup?  Make a sheet tent over the steam kettle, put in Vick’s and then hold the child under the tent.  If that treatment doesn’t work, sugar with a drop of kerosene. Give a few drops of whiskey if you got it.

a dose of pee

Here’s what applied to us grandkids. Pinworms?  Check rectum at night with a flashlight then give all the kids a stinky medicine that I think had tobacco in it.   Earache?  Warm up pee in a teaspoon a little more than body temp  and pour it in your ear. Stick in a plug of quilting. I would hide in the cedar closet  as long as I could before telling Mamaw.  I made her use my pee.  Here is the thing: it worked. Pee is sterile upon leaving the urinary tract.  Of course I knew nothing of a “clean catch”.  Collection was easier when we got an indoor bathroom.  You figure it out.  When I checked the internet for possible mechanisms of action (MOA) of the pee, there was a claim that urine is an antifungal.  Of course on the internet you can probably find a claim that golf balls extract is good for an earache too.  I made that up.

Mamaw’s rocker and sock monkey

What would Mamaw do about Hepatitis C treatment management?  Probably just rock me and say “Doggone it.  It’ll get better.”    I have her rocker in my house.  It sure is smaller than I remember.  Anyway,  it doesn’t really work without her.

Hepatitis C: Is that a Real Poncho or is that a Sears Poncho?

Mothers of invention, Theatre de Clichy, Paris...

Mothers of invention, Theatre de Clichy, Paris, 1970-1972 (Photo credit: Wikipedia)

“Look here brother,
Who you jivin’ with that Cosmik Debris?
Now is that a  real poncho or is that a Sears poncho?  Hmmm, no foolin’?”

Frank Zappa and the Mothers of Invention

Do you have a liver doctor (hepatologist) or a gastroenterologist?  Many people start out with a liver doc then over to a local gastro for long-term treatment management.  Kinda like selling your mortgage to a broker that does home mortgaging on the side but commercial financing is his bag.  I know, lame example.

Now a gastroenterologist is trained on the liver but probably hasn’t thought much about it since his fellowship at school.  Why?  Because his specialty is the GI tract (esophagus to anus).  In fact many gastroenterologists spend so much time with endoscopy or colonoscopy, they are refered to as “Scope Monkeys”.   The liver is not part of the GI tube.  No foolin’

Follow the GI tract from esophagus to anus. Then look at the liver.

Members of the two GI national associations, the American Society of Gastroenterology and Endoscopy (ASGE) plus the American College of Gastroenterology (ACG), do not attend meetings with the American  Association of the Study of Liver Disease (AASLD) and visa versa, unless presenting new research data.  But they don’t attend each other’s lectures. I know. For decades I attended the joint meetings of ASGE and ACG. It is difficult for a gastroenterologist to stay current on evolving treatments for Hepatitis C.  And these days the treatment (r)evolution is on.

Two weeks ago the AASLD and the EASL (European Association of the Study of the Liver) met in Prague to discuss Hepatitis C and:

  • Global scale intervention and control of HCV – OK
  • Prospects for a preventive HCV vaccine – OK
  • Review of new drug treatments in development such as Nonnucleoside inhibitors of HCV RNA polymerase, NS5A inhibitors, and Cyclophylin inhibitors – Important to you
  • Effectiveness of triple combinations in cirrhotics Important to a lot of you

Why do I mention this?  Here is an example of why.  Treatment of Hepatitis C is complicated and lasts a long time. The ribavirin induced anemia is treated by dose reductions based on your weight.  If your red blood cells (RBCs) drop below 10 mg/dl, Ribavirin is reduced by 20%.  If the RBC number does not increase in a few weeks, dosing must decrease another 20%.  But the dose cannot drop below 600 mg.  Now adding the protease inhibitors telaprevir and boceprevir,who knows what happens to RBCs in you?  Does the gastroenterologist know that?  Doubtful.  Does he know about the new drugs that work at different sites on the virus?  No.

Your insurance co-pay is probably the same regardless of which specialist  you visit.  Why not go with the real poncho?  BTW I couldn’t find a real poncho, only a Sears type poncho.  No foolin’

References

http://www.songmeanings.net/songs/view/78854/#mjbJdWKO6aRwIzk0.99

http://www2.kenes.com/PRAGUE2012/SCIENTIFIC/Pages/ScientificProgramme.aspx

http://www.natap.org/2012/APASL/APASL_08.htm

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_anemia.pdf

Hepatitis C: Does “No Detectable Virus” Equal Cure Or Is It Smoke?

Am I cured or is it just smoke?

Hepatitis C cure?

 If my hepatitis C virus test shows non-detectable virus 6 months after the end of treatment, am I negative?  Will I  stay negative?  Am I cured?  In the recent past only “non-detectable virus” was declared. Now doctors are adding “cure” to the jargon.  This is with the addition of Incivek and Victrelis, and depending on the discussion.  No two clinical trials are alike and so Hepatitis C researchers use (they say utilize) sustained viralogical response (SVR) to compare outcomes.  Most trial design is by the company developing the drug.  One goal is to ask the study questions just right to get scientific and marketable answers.  “GodZillapravir had a non-detectable  SVR at weeks 12 and 24 in 85% of patients including those with mild to moderate cirrhosis”. “KingKongViracide cleared Hepatitis C virus in 94% of patients at 24 weeks including children 12 to 18 years of age”.  Which is the better drug?  You can’t tell by the claims because two different patient populations and time lines .  But they have  SVR in common.  That is why researchers use SVR.  BTW I made up the examples.  Now don’t get down on industry just yet.  Academics are accountable to department heads and medical journals.  That can be as powerful as a stockholder.

Industry is different: Stock holders in towers

When it comes to patients , the word “Cure” has emerged because research shows that if you have no detectable virus after six months, the chances of Hep C returning is about 1-2%.  And the argument is that it was never cleared, just so low that it was undetectable.

So with Hepatitis what does this mean?

Successful treatment for Hepatitis C hasn’t been available for long, so doctors are just starting to understand the long-term outcomes.  Do cancer survivors say cured?  I think they say  cancer-free for 2 years, 5 years, etc.  Am I a Hepatitis C survivor or am I cured?  Is it still a pre-existing condition?   A research site, not insurance, paid for my treatments.  But my medical records say Hepatitis C.

So at 24 weeks can I tell the insurance company that I no longer have Hepatitis C?  I can’t find the answer to that question without talking to them directly. I will wait until 2014 (I think that is the year) when they cannot cancel me for pre-existing conditions.  Insurance politics are so confusing, I am not clear if that stipulation is on the potential chopping block.  In speaking with my mental  Dr, I realize that I do not have confidence in my treatment and I am waiting for it to come back.  I am at 4 1/2 months post treatment.   I have been Hep C positive for so long, I don’t know how to have a future in which chronic debilitating illness isn’t a key player.  What is the world like with only mild hypertension and chronic but manageable depression?

Below is a good article for defining end-of-treatment terms, although it is a bit dated.  Newer drugs are not addressed but the terms are the same.

 Hepatitis C: What Is a Sustained Virologic Response or “SVR”? (From Charles  Daniel, former About.com GuideSVR) 

SVR is the closest you’ll get to “a cure” for hepatitis C.
 Sustained virologic response, or SVR, is the goal of hepatitis C treatment.  Conventional treatment (a combination of interferon and ribavirin) doesn’t  necessarily eliminate the hepatitis C virus from your liver. It can, however,  suppress the virus to undetectable levels for an extended period of time. In clinical language, this is called a “sustained virologic response,” or sustained  response. It means that during the six months after you complete treatment,  there is no detectable hepatitis C virus in your blood.                                         SVR is a good thing.
Studies have shown that with a six-month SVR (which means no detectable virus in your blood for six months after finishing treatment), relapse occurred in only 1-2% of patients. So, for every 100 people who finished treatment and attained SVR, the virus will return in only 2 of them. However, for these people, the
virus never really left. The medicine was able to eliminate most of the virus (so much that medical tests couldn’t detect it), but after treatment ended, for whatever reason the virus was able to continue replicating itself.

Early SVR is beneficial
Since the liver has incredible regenerative ability, achieving SVR
 as quickly as possible is important. This is important because some liver damage can be reversed if the cause of the damage is removed. After SVR is reached and depending on the degree of damage from the virus, the risk of hepatocellular cancer is reduced and about 25% of people see an improvement in fibrosis.

SVR compares one treatment to another. For those in treatment, SVR is the goal. However, for physicians and scientists researching new hepatitis treatments, SVR is also used to evaluate new medicines and compare them with proven therapies.
 For example, depending on the genotype, treatment with interferon alone usually achieves SVR in 15% of the patients. When interferon is combined with ribavirin in the same genotype, SVR is increased to 70% in some people.

Jana L. Lee, R.N., CCRC Clinical Research Nurse St. Luke’s Episcopal Hospital Advanced Liver Therapies, my practical answer source and demon fighter.

http://www.hepcadvocacy.org/factsheets/HepatitisC.pdf

http://hepatitis.about.com/bio/Charles-Daniel-37713.htm

Hepatitis C Now Godzillaprevir and KingKongViracide: Yes but is Interferon Still in the Mix?

GodzillaPrevir

KingkongViracide

No matter how powerful add-on drugs are, if Interferon is still part of the mix, many patients will not be able to finish the treatment.  If I was in early stages of Hepatitis C with minimal liver scarring, I would wait 12-24 months for new treatments sans Interferon.  If my Hepatitis C were more advanced, I would go to www.clinicaltrials.gov and type in my disease and city. (Note disclaimer at end of blog)

Below are “press releases” from companies and are mostly targeted to investors, e.g. The market for treating hepatitis C has burgeoned  (My spellchecker doesn’t recognize this as a word) in the last year.

Always look at the source of medical information, if it is Kiss Your Assets Good-Bye or Liver Heard on the Street, run away. If it is the New England Journal of Medicine, or Gastroenterology proceed with caution and a jaundiced eye.  Oops a hepatitis pun.

Dec 1, 2011 – Novel Hep C Treatment Excludes Peginterferon Alfa By: DENISE NAPOLI, Internal Medicine News Digital Network Therapy with a novel

But then if I didn’t read the business news, I wouldn’t know about this for another couple of days:

Bristol-Myers Drops Hepatitis C Drug After Patient Death

Daniel Acker/Bloomberg

Bristol-Myers Squibb Co. has abandoned an experimental hepatitis C pill it bought for $2.5 billion earlier this year after one patient died and others were hospitalized while taking the drug in a study.

                    

Bristol-Myers will take a charge of $1.8 billion in the third quarter related to research and development of the therapy, the New York-based company said in a regulatory filing today. The drugmaker suspended testing the medicine, known as BMS-986094, on Aug. 1 after a patient developed heart failure.

Bristol-Myers said yesterday it has discontinued development of the drug, part of a class of medicines called nucleotide polymerase inhibitors, and was consulting with U.S. regulators to assess the treatment’s effects. Along with the death, eight patients suffered from heart and kidney toxicity, the company said in a statement.

“Bristol-Myers paid a fortune for a pearl that turns out to be fake,” said Erik Gordon, a University of Michigan businessprofessor who follows the health industry, in an e-mail today, referring to the company’s “string of pearls” name for its acquisition strategy. “The Inhibitex acquisition shows the dangers of paying huge premiums for late-stage drug candidates in hot areas. They still can fail.”

I love it:  The dangers of paying huge premiums…Not the dangers of participating in clinical trials. No disrespect to business people, just a different perspective.  I should know, I worked in Big Pharma for twenty-five years.  First make money for share holders, then do no harm to patients.

dictionary.reference.com/browse/inherent existing in someone or something as a permanent and inseparable element, quality, or attribute:

There is inherent risk for patients in clinical trials.  You can quote me on that.

The Hepatitis C Screen Door Swings Two Ways

My father-in-law wanted Viagra.  He wouldn’t shut up about it.  My mother-in-law finally said “Then what?  You’re not getting on me”  eewww, the visual for me….

So we screen for Hepatitis C, then what?

Attention Baby Boomers: The Centers For Disease Control (CDC), the group that tracks bird and swine flu, is thinking about screening you for Hepatitis C.

Hepatitis C is particularly dangerous because it is a silent killer. It can live for decades in a person’s body, slowly destroying the liver, while causing few symptoms,” said Dr. John Ward, director of the CDC’s division of viral hepatitis.

The new guidelines are expected to identify more than 800,000 infections, prevent 100,000 cases of cirrhosis, prevent more than 50,000 cases of liver cancer, and save more than 120,000 lives. Hepatitis C is the leading cause of liver transplants in the United States.

The relatively inexpensive blood test is “a small investment now for a big benefit later,” Ward said.

The CDC believes routine blood tests will address the largely preventable consequences of the disease, especially in light of newly available therapies that can cure around 75 percent of infections.

The field has attracted broad interest with two new hepatitis C drugs, Incivek from Vertex Pharmaceuticals Inc and Merck & Co’s Victrelis, reaching the U.S. market in the past year.

Sorry about the blur, link at bottom if you are interested

Should we screen for Hepatitis C in patients over 50?  There is no vaccine, the standard treatment of Interferon/Ribavirin is about  $60,000 and the eradication rate about 40-50% in the most common genotype (1).  Adding  Boceprevir (Victrelis) is $1,000 a week (x 24 weeks = $24,000). Telaprevir (Incivik) is $4,100 per week (x 24 weeks = $98,000).  So treatment =  $80,000 to $158,000.  They must be really proud of Telaprevir.  At that price they may have to keep it.  All of this assumes 24 week treatment but it is common practice for those on Interferon/Ribavirin to go 48 weeks ($120,000 for dual therapy)

 

These are all rounded numbers and this does not include anything but the drug.  Side effects are horrible.  A few are nausea/vomiting/diarrhea/depression/suicidal and homicidal thoughts/hair loss/anemia/insomnia . The new drugs add full body rash, rectal itching and/or rectal bleeding.  (This reminds me of the old treatments for syphilis: mercury and arsenic).   Many patients cannot hang and drop out. Jobs are lost, families strained and the patients overwhelmed. And then there is that pesky liver transplant for those beyond pharmacologic help (drugs).

But there are currently over 4 million people infected in the US and the largest group are over 50 with long-term damage.  And there are new tests and treatments.  For instance, researchers recently identified a specific DNA sequence in the gene that codes an immune response regulator, called IL28b. Different IL28b sequences predict whether treatment will successfully clear the virus.

With that in mind Goldhaber-Fiebert and Liu of Stanford created a computer model looking for the line at where it makes sense to go through treatment.  Remember that these people think in terms of how many patients out of 1,00 people, not what YOU should do.

After intense statistical and simulation analysis, the model showed that the new triple therapies were indeed cost-effective for chronic hepatitis C patients with advanced liver disease. Despite the large price tag and side effects, the new treatments help these patients avoid costly cancers and liver transplants — as well as allowing them to live longer, higher-quality lives.

For those patients with mild disease, the model indicated that determining their IL-28B genotype is the best next step, before prescribing a treatment.  The closer the threat of severe disease, the more justified treatment costs and risks become, said Goldhaber-Fiebert. “That would be the bottom line.”

Though these new drugs may offer relatively desirable options now, both Goldhaber-Fiebert and Liu noted that additional, and perhaps more effective, drugs are already in clinical trials.”

So in the “State-The-Obvious” department  they conclude: “As more and better treatments become available, the decision will continue to evolve, requiring further analysis, patients and health systems could also benefit from price competition with multiple treatment options available. But ultimately, treatment decisions will remain a private conversation between a doctor and a patient. “

A bit chicken shit but common in the academic world.  All studies end in “Further research is needed”.  Which is academic speak for “See you at the next medical conference where I will have more data”.  Note the reference to “health systems”.  This includes the insurance company.

Now, as a taxpayer, I wonder where the money is coming from. You can see one reason a clinical trial is an attractive option.  I didn’t pay a nickel.  In fact they paid my gas and parking.  BTW my results from 12 week post treatment just came back “No detectable virus”.  So why do I have a trace of cynicism about drug companies pushing for testing?

My mom used to yell, “close the screen door, you are letting the flies out”.  I always thought that was funny. Regarding screening and insurance that may be true but not so funny.

http://www.nlm.nih.gov/medlineplus/news/fullstory_125350.html

http://health.yahoo.net/news/s/nm/all-baby-boomers-should-get-tested-for-hepatitis-c-cdc

http://med.stanford.edu/ism/2012/february/hepatitis.html

Things not to say to a person with Hepatitis C

Things to not say to a person with Hepatitis C

 You understand this medical stuff. Explain it to me like I am an insensitive idiot

 What did you do to get Hep C?  Insensitive Idiot again. If I want you to know, I’ll tell you

What is your endpoint?  Death?  Transplant?  Winter Olympics?

Would you like concealer for your eyes?  Here just keep it.

Are you okay in that chair?  You are listing about 20 degrees

Maybe we should wait to clean your teeth after your treatment is finished

You got crazy eyes

You don’t seem like yourself.  No shit

When will you get back to normal? Normal is a setting on a washing machine

Hey I’m getting a carload of friends and we are coming to spend the day with you!

So now you are healed?

I didn’t recognize you.

What happened to your hair?  You might think about Rogaine

You look like shit!

What is that disease you got?  I want to tell everyone at the family reunion.   You have never met these people but they care

We are all praying for you.  A lot of people with Hep C have no friends/family due to previous what ever.  Surely God doesn’t go by share of voice

Didn’t your ex husband die after a liver transplant?  Yes

So when is your transplant?

Didn’t David Crosby have a couple of transplants?

Wow, you have really lost some weight.  Good for you

Wow this time you didn’t shed the extra pounds

There is a blood drive today in the lobby.