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

Where Is Reset? Life After Hepatitis C Treatment

 After four  years and two rounds of Hepatitis C treatment, how do I reset my life?

In 2009 I enrolled in treatment round #1 for Hepatitis C.  I was a subject in a drug trial.  As it turns out, I received standard of care: Interferon and Ribavirin.  This didn’t wipe out the virus, but did wipe out my career.  Between the emotional, psychological and physical melt down, my performance at work  never recovered.  In fact my performance began to slip a couple of years before that.  Depression coupled with anxiety along with tiredness from hep C, career and  school  left me mildly catatonic.  Oxymoron?

After round one, from which my career never recovered, I retired early.  I was that rare bird, a person with a retirement package, and I wanted to keep it.  This was in 2010-11 when pharmaceutical companies were reducing employee numbers by 30-60 %.  If sales aren’t up, expenses must come down.  Employees are expensive, especially when you think quarter to quarter. Human Resources (Man Power in my early days) would never say it, but a disproportionate number of older/higher paid employee positions went away.  A vague yet popular term was “you are not on board”  meaning you are not 110% aligned with new management thinking. Your resistance to any part of process is slowing us down.  Younger business/science professionals with a great deal of ambition and no scientific historical perspective are cheaper and quick to get “on board“.

I agree, I was not on board.  The new direction was not science. The new direction was “scientific marketing”.  WTF is that?  BTW, I used to love my job, absolutely love it.  I had the good fortune to work with  AZT, the first HIV drug and with Ritonavir the first antiretroviral for HIV.  I saw people begin to live with HIV. Ritonavir is now being studied for hepatitis C. I worked with the first oral anticoagulant that didn’t require blood monitoring ( this drug didn’t make it to launch after millions of dollars in research) and the first proton pump inhibitor for GERD.  I put teams of field scientists together in both Hemostasis and Infection.  I developed their individual and group skills.  I was good at it.  I wasn’t as good at managing up the ladder once science got squeezed by sales.  So why can’t I just get on board elsewhere?  Because I have to live with myself.  Whew, too many I’s in that paragraph.  I am trying to learn to relax and live with the debt bomb that will gobble up my little anti wolf money.

English: AZT (zidovudine), the first medicatio...

English: AZT (zidovudine), the first medication shown to be effective against HIV. From the National Institutes of Health website (http://www.history.nih.gov/NIHInOwnWords/docs/page_05c.html). (Photo credit: Wikipedia)

When I was nine, Dad would drive 70 miles to Indianapolis  at 3 AM and pick up fresh produce, then back to  Al Monger’s fruit market.  I  remembered that name because Dad called my dog a mangy mongrel.  I pictured Al Monger as a hound dog  (Mom lost my dog later while drunk.  I cried about that dog for years).  Dad’s pay in part was produce.  He and I would drive through “rich” neighborhoods in an old pick-up truck and peddle watermelon from the back.  We cut plugs from a melon for house wives.  When one turned up her nose, he would say “That woman doesn’t know what trouble is”  And I thought yeah, be poor like us, then turn up your nose at a watermelon.  At day’s end we took the rest home.  It was July and Mom was pregnant with my brother.  She ate watermelon all night long.  We lived in an apartment upstairs with pink  lace plastic curtains and no screens. I knew we hit a low.  She always looked down on plastic curtains and she even had them tied in a knot.

On really bad broke hang-over days, Dad would get a pint of aluminum paint and a pair of cheap gloves.  He made a handle from a coat hanger and ran it through his belt.  We drove through rich neighborhoods and picked out a rusty TV antenna.  We parked on the curb, not the drive. I sat in the truck looking out the window.  He always had a smoke on him while talking to the homeowner. He told the lady of the house he could save that antenna.  After the first one, he convinced neighbor ladies.  For $5 he climbed the wobbly three-sided antennae and painted  up and down streets.  That night we would be “rich” and he would look like the Tin Man from the shiny paint.  One time he said “I sure am thirsty, you want a root beer?”  Are you kidding, heck yeah.  We got ice-cold mugs at the A&W.  I had to gulp it down.

Laughing, he said  he had places to go and people to see.  We’d stop by the store for bread, bologna, milk and Camels.  Maybe Hellman’s too.  A little jar.  Everything we  bought was in the little jar,tube, bottle, box or scoop.  I suggested to Mom once that we could save money by purchasing bigger quantities.  She straightened me out on that thinking.  Only rich people could afford to buy big tubes she said.  I figured out later that her “rich people” were the middle class.  I watched “Leave It To Beaver”  and wished I was in that smiling rich family.  The hedges were trim, mom vacuumed and dad came home on time every night sober.  It was like we lived in a place called Pooristan.

I still love saddle oxfords

If bill collectors came to the door, Mom would push me to tell them she wasn’t home while she hid in the hall.  They looked straight at me with eyes that said “You are lying little girl”.  We shared that moment.  I swore that I would never have the wolf at my door.  I determined to get a good job, maybe teaching, and get a used station wagon, maybe red.  That’s why I am on my 3rd red Volvo. Maybe.  Never did get a station wagon.  Still love watermelon.  Grew my own this year.

From about age six, I collected pop bottles for pennies.  I went to Cozad’s Grocery and anguished over what candy to purchase, favoring slow treats like a Sugar Daddy. If other kids collected bottles, I would cash them and take a cut of the money. I had the corner on the market. Other kids weren’t even allowed to leave our street. From age ten, I took in ironing, babysat brat kids while parents worked second shift, cleaned houses, anything to get money for school clothes and saddle oxfords. Of course in my house I washed dishes, cleaned house, did laundry, then hung it out.  There was nothing wrong with that, my mom worked in a factory everyday.

I still love saddle oxfords

I babysat my brother every summer from age 11 when he was two. In exchange Mom would  get me “something nice” at the end. Once it was my cousin’s used record player.  I couldn’t believe my good fortune.  I went downtown on Saturdays and spent the afternoon choosing a 45 rpm record.  It was 45 cents.  I played Motown non-stop. When I was fourteen I got a blue Princess Phone,  which was good because Dad always pulled the house phone out of the wall when Mom tried to call the police on him.  Phones didn’t plug in those days, the phone man had to come and repair it.After a lifetime of pushing myself to do better, the wind stopped blowing. Now that I spent my life getting out of Pooristan, can I enjoy retirement or will I fear the wolf at the door?  I have been thinking a lot about that.  And I’m only 4 months past treatment number two for hep c.

I did the craziest thing today, in response to a head hunter’s call, I sent in my resume  for a position as a Medical Affairs Director (managing a team of liaisons and of course managing up).  It is a small biopharm company that focuses on orphan drugs (rare diseases).  What was I thinking?  I don’t want to work that hard or long.   IF I talk with them, I’ll price myself out of the market.  A former colleague contacted me last week about some part-time project work.  After talking with him, my skin crawled from all the business bullshit slang.

How would I give back to the world if I could do anything?  I got all this education and pretty good team management skills, but low tolerance for bullshit.  That rules out about everything. I would like to help kids in difficult circumstances, but I remember the church ladies trying to help. No thanks.  My childhood stuff isn’t completely in the closed file.   I wouldn’t mind making a little money but that isn’t the “it”. Suggestions?

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.

I Pooped Today, Things to Track with Hepatitis C Treatment

“I Pooped Today”  Important information to track while on Hepatitis C treatment

If you choose to participate in a drug study while being treated for Hepatitis C, be prepared to keep a diary.  Most of these examples are from round one.  You know what they say about experience:  There are those that got it and those that are going to get it.  I’ve been both.  During round two, I knew a lot of holes were out there and walked around them.  Or paved them in advanced.  I did find new ones.

Dear Diary:

How many bowel movements have you had since your last visit? What color is it? I think this is a test to see if I am fixated on poop.  BTW Your family doesn’t want to know about your poop even if they pretend to.  Most people on treatment have frequent stools but not me.  See, don’t you wish you didn’t know?

Get comfortable discussing your bodily functions with everyone in a white coat. You haven’t had dignity for a while. How dark is your urine? I don’t know, it’s diluted when it hits the toilet bowl. Does it smell? I really want to make a nose joke here.

How’s your eating? Food smells and tastes like pennies and my stomach burns. Have you tried not eating spicy foods? I am only eating buttered noodles and Little Debbie Oatmeal Cakes.  Oh.

Brain fog “Loss of ability to concentrate. Memory loss”   How has your memory been?Huh?    Non-participative.  Try to write everything down in one place.  I can’t seem to find my notebook, so I start another. Kinda makes it worse.Try to hold a job let alone a career with that side effect.

Did I take my medicine? When did I take my medicine? Did I take it in lemon duck? Did I take it with a eunuch?  Did I take it on my death-bed?  Did it make me see a dragon’s head?  Write it all down, you won’t remember.  (ref Brain Fog)

Try to get as much sleep as you can. Brilliant. Now I lay me down to sleep, to lie awake with Lil Bo Peep.  Okay, a bit too much rhyming.  But today my brain wants to rhyme. 

Avoid undue excitement. You mean like my brain running The Fifth Element  Flossing Paradise 24/7? We can prescribe sleep medications. Why didn’t you tell me that 6 months ago?

We recommend aerobic exercise 15-20 minutes/day. Are you shitting me? Do I keep track if you are shitting me?

How many times did you have a blinding H/A this week? How many not so blinding?  Let me see, I cry a couple of times a day.  Crying results in a blinding headache.  So I hold in the crying.  The result, “not blinding” headache.  I’m not sure if I am crying on the inside or outside.

Rashes and skin changes. Is that because of medications or just old spots?  What about the ones that are 3-D?

My skin itches. Take an antihistamine. I did. Take Benadryl 50 mg. Spit will fall out of my mouth if I have any secretions Can I see a dermatologist about this?  Sure but it will be weeks before we can get you in.  WTF is a dermatologist so busy doing?

How has your mental health been since your last visit? Can you draw a line on this form to show the change? I can’t give you any more instructions, even if you don’t understand this (silly) form.  The -Y axis is not long enough to document  the rate of my decline.

Do you think we should put you on antidepressants? I don’t know who I am much less what I need. Have you had suicidal or homicidal thoughts? I can’t remember. With or without headaches?

It is Tuesday, time for my weekly injection. Just when I was feeling up line dancing in a circle (props go Dos XX commercial). Where was your injection site last week? In my forehead with a silver bullet.

Because my Hemoglobin (HgB) is so low, I can’t walk  from the parking structure to my work appointments. Can I get a Handicap Placard? No one has ever asked for one before. So can I get one? Bring us the form. The Dr. will have to sign it.

License branch information booth: Do I have to stand in the long line with the masses? If I could stand that long I wouldn’t need a Handicap placard. Then bring someone to stand in line for you. Next

Null Responders in a horse race

Null Responders:   Poor Bastards and Horse Racing

Being a null responders is kinda like paying for your horse to run in the Kentucky Derby, going to the first turn, watching all the other horses go by and realizing that your horse never left the gate.  You put all your money and resources on that horse and ….he is a fizzle.  This is one opportunity I missed!  When you enter a treatment or a study, that is the horse you pick.  Put some research into picking your horse. At the end of the day, everyone else tears up their ticket.  You gotta load up that horse and take it home.

Note on the graph below by Vertex is an example of full, partial, breakthrough and null responder

http://www.vrtx.com/assets/pdfs/VRTXHCVTreatmentResponse.pdf

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.

Partial Responders with Hepatitis C

All Hepatitis C studies are not created equal. Duh

I used to see myself as smarter than the average bear.  Not so much now.

Being me, I was not passive when searching for a Hep C study.  But I was mistaken.   I assumed. Don’t make an assumption.  I knew better.   My mom taught me this.  Every time some of us kids got in trouble, she pulled me aside and said, “You know better”.  It was years before it dawned on me that other kids knew better too.  My mom was once a kid.  In fact she was still a kid when she had me.  In 1951 it was not cool to have a baby out-of-wedlock.  My biological father passed on marriage and she had to go back home to Harlan County, Ky.   This is where I was born.  Papaw told me to say I was from “Bloody Harlan” because of the bloody mine strikes.   So that is what I told my teacher.  Papaw and all Moms’ brothers were coal miners.  We didn’t make moonshine (the other career path)

I learned that the TV show Justified   is about Harlan County.  I don’t watch it myself.  Makes me jumpy.

fig 1.Me, Mom in the white car coat, dad that raised me, Mamaw, Papaw, and aunts. Harlan County, KY. My mom has the big nose like Papaw.  She waited to get a nose job after Papaw died

Coal tipple loads rail road cars 1

When I was a curly headed baby
My daddy sat me down upon his knee
He said, “Boy, you go to school and learn your letters
Don’t you be a dirty miner like me”

I used to think my daddy was a black man
With script enough to buy the company store
Now he goes downtown with empty pockets
And his face is white as a February snow

I was born and raised in the mouth of the Hazard Hollow
Coal cars rambled past my door
Now they’re standin’ in a rusty row all empty
And the L & N
Don’t stop here anymore

http://www.sing365.com/music/lyric.nsf/The-L-amp-N-Don’t-Stop-Here-Anymore-lyrics-Johnny-Cash/6B378501111ECA5D48256DEA000A5308

I love this song but never heard it until I moved to Texas

Where was I?    Okay brain get back on track.  Let me recommend that you do not have your driver’s license photo taken while on treatment. Very scary.

I chose to participate in a Multi Centered, Randomized, Placebo Controlled, Double Blinded study, evaluating Standard of Care (SOC) Interferon and Ribavirin (which had been my only choice all these years) vs. SOC and telaprevir for round one.  In fact I sought out this study. There were three arms, two with study drug.  I had a 66.7% chance of receiving study drug.  As I learned later, I was not randomized to study drug (telaprevir).  I assumed SOC included addressing anemia and other life threatening events.  In this case, SOC did not include blood transfusions or red blood cell (RBC) stimulant injections such as Procrit.  Standards of care have not caught up to current practices. Step one was to reduce the Ribavirin dose.  .  My hemoglobin (HgB) was 8.9 and the guideline minimum for taking Ribavirin is 10.0. Normal HgB range for females is 11.5-15.8 mg/dL.   My Ribavirin dose was decreased. Hemoglobin got slightly better but I paid for it later by not clearing the virus. In order to treat the anemia I would have to walk away from the study.  Dang it!   I quickly lost the ability to walk down a hallway, climb stairs or lift baggage without major shortness of breath (SOB) and the ability to complete a thought, all necessary for my job (oops, career). More about that later.

After treatment completion, an individual is assessed for response to measure viral load. If there is virus remaining but a reduction of disease by 30% or more  – it is called a partial response.   Partial response (PR) implies further treatment  required.  www.about.com   I moved from treatment naïve to partial responder.  Here I had saved myself for newer treatments but still got the same treatment that was available years ago.  Plus no treatment for the anemia.  How did a smart girl like me get in a dumb box like this?  I hung in there and finished the (long) 48 week trial.  Not only did I not have red blood cells (RBCs) or white blood cells (WBCs), but then the virus that was left was a stronger warrior.   Not good.  Here is the part where my education went out the window.  I was so depressed that I couldn’t function.  Every little thing was monumental.  I should have quit the study when my blood chemistry went to hell.  But I couldn’t think clearly enough to look at the situation logically.  All my decisions were made by a scared little girl.  See fig 1

You know I wanted to blame insurance companies.  It is so easy to blame insurance companies.  I wanted to blame pharmaceutical companies and the FDA.  They are easy targets too.  In reality, I, more than most, understand the study requirements and commitments. Sort of. I have been a research pharmacist for a couple of decades.  The data must be unsullied from outside forces like blood transfusions that will make it impossible to evaluate the toxicity.  That is the point of the study, not patient care.  Don’t misunderstand me.  Patients are well cared for. A patient can get treated without a study but a study cannot evaluate a treatment without patients

FYI, HgB is the molecule in the blood that carries oxygen, (O2) from your lungs to your blood and carbon dioxide (CO2) to your lungs so you can exhale this gas.  Speaking of HgB, it is a bucket brigade that carries water to a fire.  Even if you have plenty of water, if you don’t have enough buckets, the barn burns down.  Wait, that wasn’t a great example.  It wasn’t completely accurate either.  Never mind.  It’s just that I spent all these years learning this stuff; I want to get my money’s worth.  Kurt Vonnegut said only hermaphrodites use a semi colon; .Sort of.  While metaphorically I don’t relate to that, he did say it.   I didn’t pay Kurt Vonnegut, God rest your soul Mr. Rosewater.  Anyway my WORD grammar check said uses it.  I think I paid for that.  Yes of course I did.

Telaprevir (Incivek) and boceprevir (Victrelis) are now available to add to Standard of Care (SOC).  In fact by now they may be a part of SOC.  Glad I contributed to the body of knowledge that is clinical research.  Really I am.  But I wouldn’t repeat round one for nothing, not no way, not no how. It was two years before I was well enough to go for round two of treatment.  My career never recovered.

Why do you think they call it a LIVEr?

HepLikeMe: recovering from hepatitis treatment

If we didn’t need our livers to live, why are they named LIVEr?

If you have Hepatitis C and are reading this blog, I assume you have a working knowledge of this disease.  If not, there are great sites such as

http://www.cdc.gov/hepatitis/C/index.htm

and crap sites where lay people talk out their irresponsible asses.  If a statement starts with “I feel”, “I think” or “This herb won’t hurt, it is organic/ natural” run away.

My daughter tells me I have always been a bit ahead of the curve.  She says I am hep. I moved to the country and painted my mailbox blue before it was hep.   I got sober before it was hep. You get the idea. BTW hep is better than hip because Cab Calloway said it.

I like to type BTW.  You have been warned.

Indeed, Hepatitis C has now become main stream

http://www.chron.com/default/article/CDC-mulls-hepatitis-C-testing-for-boomers-3550384.php

I have just completed round two of treatment for Hepatitis C genotype 1.  Is the treatment worse than the disease?  No, but  that is difficult to grasp when you are asymptomatic.  Or at least you are ignoring symptoms.  This round sucked less of my life out of me, only because I brought the experience of round one.  Sounds like a prize fight. TKO I was technically knocked out by round one. I didn’t care after a while.  A new experience for me.

In order to survive, one must care.  The treatment says fuck it.  Don’t fuck it

In 2007 I began my first, and what I thought was my only, round of treatment for Hepatitis C.  The treatment, Pegylated Interferon and Ribavirin, did not clear the virus (we don’t say cure.  That is for hams).  What it did do was kick my ass to the curb.  The recovery was longer than the treatment and I never did get back to where I was.  All of my depression and insecurities bubbled up.  Depression is so depressing, insecurities so insecure.

In 2011 I began treatment with Interferon, Ribavirin, and two antiviral study drugs from Gilead Pharmaceuticals. Each drug attacks a different site in the virus life cycle. Early on there was no detectable virus.  Still not.  My treatment ended after a short (wink wink) 24 weeks.

Background:

In 1992 I donated blood and got a letter in the mail from the blood bank saying “you’re a winner.  You have Hepatitis C.  Please don’t give us your blood again.”  I was a winner.  No further information.  I went on with my life but didn’t donate blood and made it clear that my organs are not a gift to the living.  There was no proactive information regarding this disease and I had not exposed my liver to toxins in years.   I went underground with my secret.  Ironies abound. Forward a few years. I worked in Medical Affairs for a large pharmaceutical company, and my field of expertise was gastroenterology.  So, having access to the top research hepatologists, I had a liver biopsy performed for base line.  Marvelous results, you are great, minimal inflammation, no scarring or activity.  Go away and check back if things change.  Whatever that means.  I saved myself for new therapies.  I was treatment naive in the lingo. I love it when I can say words like naive.  There are web sites to define phase and staging of liver biopsies.  Bottom line,  Inconsistent

In 2007 during an annual physical, (which the AMA is now discouraging) my liver enzymes were elevated.  My internist wanted to send me to the local gastroenterologist, but me being Dr Science, I said no way.  And I pursued another research hepatologist.  Had another biopsy, phase one grade one activity.  Options, ignore or don’t. By then there was a minute amount of data indicating that maybe older patients (> 50) should go ahead and get treated.  That would be me.  Amazingly, there were no new available treatments.  So, I went to the government site www.clinicaltrials.gov , and entered my disease and city. Voila, there was a site with a randomized trial comparing Standard of Care (SOC) to SOC plus telaprevir.  This site was affiliated with a gastroenterology department at a medical school where I had a relationship (not relations) with the head of Gastroenterology/Hepatology. This DID NOT influence my ability to enter the trial.  But because of that relationship, I had confidence in and respect for the quality of research.

Enough for today.  This is a lot of work.

Deb