week 15 of pegintron, PLEASE READ if you are on treatment

[mindy]

Hi my family in my favorate fellowship, I am sad to tell you I am at week 15 of 3rd round of tx.  made it through the incevic part with little itcy rash that goes away, my insureance would only pay for antiquated peg-intron and riboviron and an injection called aranest for my red blood cells.  At week 14 I suddenly started having seizures and my hep c doctor told me to stop the treatment.  I do want to tell you do not be discouraged you can do this.  The tx was worrking for me no virus detectible within one week of tx but my red blood cells keep dropping SO LOW I have needed two blood transfusions and my liver is between stage one and two.  DO NOT GIVE UP YOU CAN DO THIS AND BEAT IT,, I WILL DO IT AGAIN AT A LATER DATE.  HANG TOUGH, OUR CHILDREN NEED US.  LOVE YOU ALL  mindy

[MissyMouse]

Mindy,

Do they know what was causing the seizures?  Were you by chance taking any kind of anti nausea medication?  Back when I had Leukemia I would get seizures (mine were actually defined as Tardive Dyskensia) from most of the anti puke drugs.  Have you tested nyour viral load since stopping?  Do you know whether or not you are still virus free?  I wound up on Aranesp injections during my second round of treatment.  Stuff burned like hell going in.  I know Doug is a transfusion junkie when he is on treatment.  They say that with the incivek you can shorten your treatment to 6 months and you really didn't fall that short.  So if you haven't been tested there may be hope.

I'm sure Doug, Willy and Jazz will weigh in on this once the get a holiday free moment.

Sad to hear you had to stop.

Mouse

[DougV]

I lived on transfusions, every other week two units packed RBC.  Aranesp is a longer lasting version of EPO.  For me they did not help.  Even Pegintron isn't old, just a competing brand to Pegasys that is weight based not one size fits all. 

Seizures can be caused by so many different things, electrolyte imbalance, severe anemia, reaction to other drugs, nrurlogical, heart, and on and on.  I hope it turns out yours were tratment related so do not reoccur.

Don't give up hope.  There are ongoing studies looking at 12 week treatments, you might still make it and hopefully you will.

I do know how it feels to be forced to quit, I was taken off at 39 weeks last time.  Did not have seizures but have experience syncope while on treatment.

Sure hope everything works out for you.  If you do relapse and opt.to try again later I would highly recommend you see a hematologist first.  I had weekly labs to monitor blood levels and rapid response when they dropped.  Sure helped a lot.

Doug

[willy]

Hi my family in my favorate fellowship, I am sad to tell you I am at week 15 of 3rd round of tx.  made it through the incevic part with little itcy rash that goes away, my insureance would only pay for antiquated peg-intron and riboviron and an injection called aranest for my red blood cells.  At week 14 I suddenly started having seizures and my hep c doctor told me to stop the treatment.  I do want to tell you do not be discouraged you can do this.  The tx was worrking for me no virus detectible within one week of tx but my red blood cells keep dropping SO LOW I have needed two blood transfusions and my liver is between stage one and two.  DO NOT GIVE UP YOU CAN DO THIS AND BEAT IT,, I WILL DO IT AGAIN AT A LATER DATE.  HANG TOUGH, OUR CHILDREN NEED US.  LOVE YOU ALL  mindy

Just to make sure I understand;

You treated with Incivek (telaprevir)  Your standard of care was with pegintron, there was not a lead in with the pegintron; you started all drugs art the same time.  You cleared at about week 1 and followed for about 14 weeks on full dosage of all drugs?

I wonder if you could continue at half dose safely?  Do they know what is causing the seizures?  You have been off Incivek for about 2-3 weeks?  Is it possible that the sizures are from the PI?  Or is it from anemia?  Or is it from the SOC? or is it that they don't know, and so they are stopping everything?

As Doug said...... there is a chance that you could clear, given your clearance at 1 week.  I have to wonder if you could possible continue at a low maintenance dose of SOC, possibly with some sort of anti-seizure drug and finish out 24 weeks?  Is there someone who could compute your chances as of now?  The earlier viral response provide one of the best predictors of success, and so I think it is possible you could succeed, particularly if you could (safely) stay on TX a little longer.


-----------------------------------------------------------------------------------------------------
A Practical Guide for the Use of Boceprevir and Telaprevir for the Treatment of Hepatitis C
Source: The Future of HCV Therapy With the Advent of Direct-Acting Antiviral Agents
By: Nezam H. Afdhal, MD, FRCPI, Geoffrey M. Dusheiko, MD, FCP(SA), FRCP, Xavier Forns, MD, Donald M. Jensen, MD, Fred Poordad, MD

http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20New%20Agents/Module/Practical_Guide/Pages/Page%206.aspx

Managing Adverse Effects With Boceprevir- or Telaprevir-Based Therapy

"Among patients treated with telaprevir, 32% required a RBV dose modification for anemia vs 12% for those treated with pegIFN/RBV.

In telaprevir clinical trials, erythropoietin use was prohibited and anemia was managed through RBV dose reductions. In a pooled analysis of patients from the ADVANCE and ILLUMINATE trials, 12% of patients (44 of 361) who had hemoglobin reductions to < 10 g/dL required blood transfusion vs 5% of those from the control arms (5 of 92).[60]

In the same pooled analysis of treatment-naive patients in ADVANCE and ILLUMINATE, RBV dose modifications (reductions or interruptions) were not associated with lower rates of SVR in patients who were treated with a telaprevir-based regimen.[60] Anemia appeared to have no association with SVR rates. By contrast, anemia as well as RBV dose reduction was associated with lower SVR rates in patients treated with pegIFN/RBV only."....

..."Panel Recommendations

    Modest RBV dose reduction (200-mg increments) is a good approach for managing anemia in boceprevir- or telaprevir-treated patients, as it does not appear to affect response. Some clinicians may choose to use erythropoietin, particularly for severe or symptomatic anemia. However, use of erythropoietin for HCV anemia is off label, and care should be taken to not allow the hemoglobin to exceed 12 g/dL.

    Use of erythropoietin may be necessary to avoid discontinuation of boceprevir or telaprevir. Transfusion may be required for patients and can be effective, particularly for cirrhotics. Once boceprevir or telaprevir has been stopped, it should not be restarted. Best clinical judgment should be used. Boceprevir and telaprevir must not be dose reduced. "
======================================

Your doctor might also check w/ Vertex 24 hour nurse support line and see if they have any suggestions, but of course, it is your and your doctors decision.  I do not believe i have encountered telaprevir causing seizures.   Wonder if it is your rescue drug, but it could also be a non-treatment related issue.
========================================

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000266/  (aranesp)

[Jazzdenova]

My heart goes out Mindy especially after having made it through the roughest part. You got some good advice given by some experienced dragon warriors, don't give up hope just yet. And Merry Christmas!

[mindy]

happy New Year to my dear fellowship.  Thank you my favorate veteran members for replying to my post.
What really happened I now know, I figured it out.  4 Sundays ago my mom was doing the jewish dinner for my
entire family in N.J.  I live not far but in PA.  I had pain in my chest and had called my primary, his nurse did not
even have me come to the office, she called my pharmacy and prescribed an antibiotic called Levaquin.  The Levaquin does not
go well with the low does of keppra (seizure med) that I was on.  I finally went to the hospital and had x-rays done it was acute
broncitus and even the e.r. doctor told me to finish the Levaquin.  Doug and Willy, my liver doc is the director of liver dept and my nurse that
monitors my whites and reds I talk to once a week because my whites and reds have always dropped way low on the other two txs.
I shoulld not have taken the chance to drive to my family that day, after doing 2 txs I can tell when my reds and whites are not right.
I have not had a seizure since July 17 (4 years ago) and when I brought the neurologist the cat scan of my brain it was the same scare tissue
from the 2nd coma in 2002 when I fell down 13 steps and slammed my head into a firewall.  It is called encephleomacia i.e. scar tissue in certain areas
of my skull.  I lost my sense of smell but that was it.  The original seizure was my fault I knew I did not feel well and should not have gone to my moms.
When I called my liver nurse at my hospital in PA, she had me transported to that hospital.  My Liver doc (the director) was away on a much
deserved vacation, so it was his 2 partners and residents that saw me.  THEY WOULD NOT ALLOW MY FAMILY TO BRING ME THE RIBOVIRON
AND PEG-INTRON AND ARENEST INJECTION TO THE HOSPITAL WHICH IS WHY I MISSED ONE WEEK OF TX.  Every one of my doctors
are at that hospital and have a list of ALL the meds that I take.  Because of all the years of active addiction I sleep very little.  I am prescribed 4 1 milagram
xanax, I do not take them in the day I have my littlle girls to care for, but from all the years of addiction my tolerance to any med is probably 3 times
a normal person.  I would take them at bedtime and still only sleep maybe 4 hours.  THE DOCTORS DID NOT GIVE ME THE XANAX FOR THE WHOLE WEEK
I WAS THERE.  It is a known fact total cold turkey withdrawl from xanax causes seizures, the day my cousin Lane, an RN who works 16 hour shifts came to get me
I had a seizure in her car, I knew I was in total cold turkey withdrawl, she got me to my pharmacy they gave me one and then she got me home to my mom
who had all my meds and slowly I tried to bring myself back out of withdrawl but had 3 more seizures right in front of my twins.  I felt the last one coming and
was able to yell to my mom call 911 before I could not speak, they came and took me to an E.R. near me.  the night e.r. doctor was able to physically stand there
and watch an seizure happen and she said these are not seizures you do not stop breathing during a seizure.  She got ahold of a neurologist where my I go and they
bumped the keppra to first 500 twice a day, then they told her to bump it to 750 twice a day and they had her do another cat scan to compare the one they had done
when I was at the hospital where ALL my doctors are.  She made me leave the hospital I was so weak and scared I did not want to but she made me.
My Liver doctor returned this past Tuesday and my liver nurse who I love dearly told him everything that his partners and residents had done to me and
that I wanted to continue tx.  He was furious at his staff but still said no, my body would become imune to the meds.  so it was all for nothing the 15 weeks
and now I have to wait all over again until other clinical trials which are in the 3rd stage become FDA approved before treating again.  He does  want me
to have the viral load blood test but his doctors have so damaged the tiny vain that they draw blood from I have to let it heal before I have the test so we shall
see, I know my body requires a pic line for any i.v. from all the years of abuse I did and that tiny vain is the only one that I have to teach them to draw blood
from, as soon as it heals a little more I will go for the viral load test.  It would be a miracle if it came back no load.  Enough bah hah to my dear friends, I pray
everyone has a wonderful New Year and I will do the next round of tx as soon as it is FDA approved.  I am heartbroken over what my liver doc's partners and staff did to me
but I love my liver doc and nurse so am staying with them.  mindy

[MissyMouse]

I'm just speechless.... what a horrible chain of events.  I wish you comfort in 2012.

Mouse

[DougV]

Mindy,

You still very well may be okay and obtain SVR.  Considering lack of veins would not hurt to put labs off for awhile.  Viral load is most likly going to be undetectable for several weeks post treatment regardless of the end result.  However your hemoglobin may continue to fall for two or three weeks so if that is potential issue it changes things.

PICC line is used up to a year.  A more permanent option, 10 years, is an implanted port.  However in both cases it is not uncommon to have a hard time drawing blood out even though lines are patent.  The implanted port is much easier to take care of once the incisioon heals as it is completely covered by skin so baths and showers present no issue.  A PICC line however is partly exposed and held in place by tape or staylock device so is a bit more difficult to maintain.

If I may, do you have seizures occasionally outside of treating?  That is a tough thing to deal with.

Sorry how you were treated in the hospital.  It does happen unfortunately and all too often.  Especially with an addiction past, nurses and doctors are all to quick to assume the worst.  Should not happen but it does. 

How old are your twins?  Fraternal or identical?  My wife and I are watching our 2 1/2 year old identical grandtwins tonight.  They are a handful.

Best of luck.

Doug

[mindy]

   Happy January 2, 2012, may all of my dear friends have an awesome New Year.  I must tell you, I
knew in my heart this a.m. (4 hours sleep) that some of my dear veteran members would have already
have read my reply I posted last night.  Betty, I did get your message but can't understand why my
laptop will not let me send window messages, you know I am a A..A. Member and cherish my God
and follow my dear sponsor's directions one day at a time.  I love all of you so much I could never put it
in words.  MY twins are identical totally, but Dana is baby A and got everything before Billie Jean even inside me
so Billie Jean is about 2 lbs smaller, you cannot tell them apart unless you get to know them.  Okay about the picc line
or permanent port to my heart.  When I was in the first coma in 1999 I had a groshong sticted into my chest but
they would not allow me to leave with the port because I was a heroin addict.  Same thing with the second coma in 2002, but it
was a pic line I think.  The reason they would not allow me to leave with any open port now is because I am so weak it can
cause infection at any given time.  It's okay because I now have to tell any person that comes to take blood I need the picc line
but by law they must try at least one time.  There is no tag I can wear around my neck that says mindy requires picc line.  Thank you I forget
Willy or Doug one of you told me and you are right, this I didnt think of, the tiny vain still is all black and blue and if I diid the viral load test
right away it still would not be accurate, the cbc test came back my reds are stilll low.  I am going to call my liver nurse today and tell
her I am waiting at least one month until I go for viral load, do you think that is enough time?  please let me know, usually after finishing full tx
we have to wait 3 months to retest.  I am so praying to God that the incevic alone may have killed the HCV time will tell.  love you all and have a great one.
Missy you know I consider you and Bill dear friends, I am not doing farmville for a while, my life and kids are more important.  I knew you would be
totally shocked at what my liver doctors and that hospital did to me.  I am letting go and letting God.  min

[MissyMouse]

LOL Mindy, Farmville is such a non issue.  It's my past time and not my priority time.  I'm guessing that once all this breast cancer crap is out of the way and I don't have to sit around recovering from surgery all the time that I will be playing back on my less frequent schedule.   I just happen to have more time on my hands than most because I don't have any kids at home or a job to go to.  I will be helping my plastic surgeon get a breast cancer mentoring program off the ground here in our community so I am guessing that's going to take up a lot of my time too.  Leave it to me to just jump into support with both feet LOL.

I personally thing a month is a reasonable time to wait to get your viral load tested.  My GI and most research says that if people are going to relapse, most of the time it's within 4 weeks (keeping in mind that was just with the old standard of peg and riba ... it may be different with a PI thrown in to the mix).

You hand tough little girl, I know you can get through this.\

Mouse
P.S.  Doug .... check your email in a few.  I've sent you some questions/issues that I'm dealing with concerning the breast cancer plus the RA plus my liver.  I'm seeing the oncologist on 1/16 and my rheumy the following week so I'm trying to get lots of info and all my ducks in a row.

[DougV]

I was going to suggest six weeks.  I know from personal experience that two weeks is too soon. 

My grandtwins are boys and I cannot visually tell a difference.  One has a tiny surgical scar so if naked I can tell, but when clothed I can't.  One tends to like my company more, the other prefers my wife, but when I rely on that they trick me and switch off.

I know risk of infection is higher with both lines, and is someone is an active user they orovide a direct path to the heart.  But I also understand the pain of multiple sticks and how sore one vein gets from repeated use and eventually it will either blow or become so calloused as to be useless.  Should be some compromise somewhere. 

Sounds like you could use a break, hopefully you'll get one now with the aborted treatment and still obtain SVR.

Doug

[DougV]

PS Missy, already replied. 

[mindy]

Have a wonderful day my dear friends, Missy, I always told you, you are my angel in disguise, after all you have gone through, you and Betty all
my Veteran members are my inspiration to keep pushing and pushing to get rid of the HCV before I can't handle the tx.  Okay Doug says wait 6 weeks
and you say 4 weeks before I should retest for viral load, I put a phone call into my liver nurse and she will return it and I am going to tell her
it is DEFINATELY TOO SOON TO TEST, I can still not eat, my hair is still falling out, Please one of the Veteran members, I asked a question yesterday
my liver nurse told me, of course I already knew geno type 1A, but then she said GRADE 2.  WHAT DOES GRADE MEAN?  NO ONE EVER SAID GRADE
ANYTHING TO ME UNTIL MY LIVER NURSE LAST TIME I SPOKE WITH HER.  PLEASE SOMEONE EXPLAIN TO ME WHAT GRADE 2 MEANS.

ALWAYS IN MY PRAYERS, KEEP STRONG JUST ONE DAY AT A TIME.

MINDY

[MissyMouse]

Mindy,

I know Doug answered your question about "grade 2" somewhere.  I'll see if I can find it and cut and paste it for you.  He was really detailed.

Mouse

[MissyMouse]

Of course I can't find Doug's response to you so I'll do one too (Doug's was probably better LOL)

"Grade" usually refers to the amount of inflammation going on in your  liver.  "Stage" usually refers to the amount of fibrosis/scarring/damage to your liver.  In "most" scales both stage and grade are ranked 0 through 4 with 0 being no damage and 4 being maximum damage. 

So if the are referring to  "Grade 2" they are telling you you have a moderate amount of inflammation going on.  You really need to double check the info with your doctors office and get both the  "grade" and "stage" to find out where your liver is.  For example when I was first biopsied I was a Stage 3/Grade 3 which was a high amount of both fibrosis/scarring/damage and a high amount of inflammation.   I progressed to cirrhosis because of medication that had to put me on for rheumatoid arthritis so I no longer get a stage or grade because once you have cirrhosis, you have cirrhosis and that just become a matter of compensated (liver still functioning to adequate capacity) or decompensated (liver not functioning to adequate capacity).  I have what compensated cirrhosis which means my liver is still getting the job done, I just need to be careful with it.

Hope this helps.  If Doug sees this I'm sure he can find his response and do a cut and paste for you.

Mouse