Continue treatment or not???

[tracyhopkins7]

HELP - this is my first time posting a question although I have been observing for some time.  I will try to be succinct as it seems as though you all are so knowledgeable!!!  I am 46, weigh 215lbs, @ 5ft 3inches fat as you can see.  I started treatment for my Hep C Genotype 1A with a plan of going 48 weeks 1200 Riba/day and Interferon 1x/wk.
Viral load started at approx. 700,000 oh by the way my cirohsis (I can never spell that) is stage 4 of 4 - that ***** right?  OK - onward...At 4 wks my viral load went down to 3,600 and I am now at week 12 and it is still detectable at 99.  I am not having horrible horrible side effects but my body is not tolerating too well the meds - my WBC is 2.2, my RBC is 3.27, hemoglobin 10.6 and hematocrit 31.4 - ok so studies say to lower riba by 200mg if my hemo goes lower than 10 and hematocrit lower than 30 - I know it is a fine line but my nurse practitioner has lowered me from 1200 to 800 and ordered me to discontinue my interferon because my WBC is so low.

She advised me that I COULD continue on w/tx if i want to and try the meds to increase WBC and HEMO (Procrit) but she said it is not a good sign that I am having to be boosted up by those meds - as I will have to continue them for the duration of tx.  So as of now I can take only 800mg riba and NO interferon for at least 2 weeks until my #'s come up.

The main question and most troublesome of all is that she told me that they now know that anyone who is NOT Virus non-detectable at 12 weeks has only a 1% chance of svr post meds which means 99% chance of virus return.  I am having a hard time finding this information online and wondered if this is something that others are experienced with?  She said she did not want to take away all hope but she is a #'s person and if it were her (which she acknowledged it is not) it would be hard to go through so many weeks of hell just to have the virus return.  She said that she has NEVER had a patient who had ANY virus detected at 12 weeks complete tx and have SVR???.

Of course my question was well will it not do any good to have the virus out of my system at ALL like even for a year?  OK so those of you who think like I do know that my real question was will it buy me another year to live if it is gone for even a while?  She said no.

So I am considering getting a 2nd opinion but before I do that I wanted to check in with the people who are living the issue like me and who are really the most in the know.  Even though I have been watching from afar your comments and conversations have boosted me far more than I could say.  Thanks for any help or info you can offer.

Tracy Hopkins

[nygirl7]

"I sadly had to make the decision not to take my shot of interferon because i decided if it takes me a while to get my referall to hepatologist through  then i believe my np would not refill my meds because i went against med advice.  "

Week 12, not UND and no IFN for a few weeks?  Well if you are off the interferon now I'm not sure why I'd continue taking the ribavirin.  A few weeks off IFN and the course of action will be to start you all over at zero. The riba won't do anything to get rid of the virus and most likely your viral load is going to go up pretty quickly. Week 12 not UND and no meds to get you down is not going to get you any better response.

Hopefully you can get a new doctor and better care and attack this disease more aggressively without any dose reductions next time. Keep learning all that you can so that next time....WITH a better doctor (not NP doctor!!!) you can beat this thing down fast.

By the way even WITH the epogen my hemo never really went up passed 10.5 throughout my whole treatment and I tolerated it just fine eventually you DO get sort of used to running with less oxygen.  It's pretty common to be about there...so this over reaction by this nurse really cost you a lot. Dont let them do that again to you.

[Trish77]

" Will take neupa today as i understand fairly fast acting. will have blood drawn before appt on mon then they will have results by tues if gi has any hesitation.  "

Sounds like a plan.  

"I sadly had to make the decision not to take my shot of interferon because i decided if it takes me a while to get my referall to hepatologist through  then i believe my np would not refill my meds because i went against med advice.  "

Tough decisions, eh?  If it makes you feel any better, I had interferon reductions for 7 out of 9 weeks in a row starting at around Week 25 and it damn near killed me to comply but I was on a trial and to not comply would be to basically kick myself off the trial.  It did work out in the end, I'm SVR now.  But it was really tough to decide at the time. Had varied opinions including those who told me to get off the trial, etc. and in the end you sift through it all and do the best you can for yourself and hope it works.

[tracyhopkins7]

That is absolutely what i want - i want to do whatever i have to so that they will allow me to continue with tx. I have been approved by insurance for both procrit and neupa.  Will take neupa today as i understand fairly fast acting. will have blood drawn before appt on mon then they will have results by tues if gi has any hesitation.  I sadly had to make the decision not to take my shot of interferon because i decided if it takes me a while to get my referall to hepatologist through  then i believe my np would not refill my meds because i went against med advice.  One time she only THOUGHT i had missed a blood draw (which i had not) and they denied my refill of interferon.  Of course i called them and said no i did not miss blood draw look in chart and they found it but just the fact that she was willing to do it so quickly gives me pause.  I am tolerating side effects really well other than out of breath and tired a few tears here and there some itching sores in corner of my mouth...piece of cake!!! Thanks tracy

[Trish77]

"Not really so worried about the procrit because as I said those numbers were on the rise. "

Well...your NP gave you a significant riba dosage reduction from 1200mg to 800mg with the numbers you had, which were 10.6.  I consider that to be an over-reaction.   If you're tolerating well, I don't see the need to dose reduce at 10.6 hgb.  Even on my trial and trials are more conservative, no dosage reduction of ribavirin was required until I dropped below 10.0.  Since you're seeing your GI on Monday, ask at what levels he'll force a dosage reduction and the procrit would be to PREVENT your hgb from getting below that. You might want to put some thought into what you want to say to the GI - let him know you're tolerating side effects very well, etc. and if it's a choice between dosage reductions or procrit, you want procrit.  Assuming that's what you want, that is.

Trish

[tracyhopkins7]

Wow - I thought I was an armchair Dr but you are eeeeeeemazing!!!  Thank you so much.  I feel so foolish - as if I had my head in the sand about this whole thing - well actually I did.  It is my fault as back in 2002 I had my first biopsy and consult re treatment.  At that time I was getting ready to move back home to Seattle from Mississippi.  The NP at the gastro office there told me at stage 3 fibro/borderline cirr that studies show weight could be an issue.  I should take 3-6 mos to lose the 40 lbs i needed to lose and then start tx to give myself every chance.  Well 5 years later and another 60 lbs heavier (i have been on methadone clinic for 10 yrs now - seems all gain weight although really no excuse) I was getting ready to go back for another local consult when a friend of mine got on tx.  Oh my god she was suicidal everything was horrible she wanted to jump out windows, she was hysterical the whole 9 yards - of course that kept me firmly rooted to my couch and scared to death that I could not deal with that.  So she finishes her year (successfully) and lo and behold life is still sucky and she is still suicidal and can't deal with anything...I never realized i guess that she was ALWAYS that way even before starting tx.  So then i finally go and find out that my time of fear and denial has given my virus just enough time to really f*** with my liver so I am forced to start tx.  I feel SOOO lucky because besides a few tears of depression and aches and pains I have not had it bad at all - in fact I think i was like "is this it???"  How lucky is that?  More problems have come from diminishing numbers like sores in the corner of my mouth, etc.  Anyway.  that is the rest of my history in case anyone gives a hoot.  I say all of that to say that I am shocked that I have not taken every opportunity thus far to research, and become an expert on my disease!  It has never been my style to bury my head in the sand so i wonder why i did on this issue?  Regardless I cannot change my past choices but the amazing rally of support, and people taking time out of their day to "lift me up" is touching to say the least.  I will keep you all informed and hope to be able to "pay the favor forward" so to speak for another person in my situation!  Sometimes that simple little prayer that I used to hate is just so appropriate....."God grant me the serenity..."

[merryBe]

My case is almost identical to yours. Opinions vary, but on the threads bellows you will find the latest study done on the subject. It showed that at least with the people studied the amount of time one was treated after going UNDetectable had more to do with whether they successfully reached SVR than when they went UND.

Read this thread READ THE STUDY at the top of this thread.

http://www.medhelp.org/posts/Hepatitis-C/more-than-72-weeks-for-SLVR/show/575996

Of course, this study ran contrary to current thinking, which was almost exclusively based on the mandatory 48 week cut off that insurances were imposing.

I was stage 3 or 4, depending on which report one believed, so my second opinion doctor brought up the 72 week study which had just been published that month, that he hadn’t even had time to read…that was one year ago. And now you have that study.
This then changed my hepatologists mind, and the insurance approval went fine.
I stress you should PRINT OUT the study and take it in to your doctor.
It is harder to deny treatment to a patient, for both docs and insurance, when the patient knows the facts, and could thereby contest a denial of care.

You got a lot of good advice above, BUT THE STUDY is crucial. Also, you should try for a liver doc, but they take time to get in to see…try for an emergency consult with one, and stay on meds until then…and at your weight, mine as well, 10.5 HGB had me very breathless…they can prescribe procrit before you reach ten…more mass means you need more oxygen and will fell worse than a thinner person at that number. Procrit is also approved for medicare at 31.5 hematocrit, so you now meet even medicares stingy guidelines. You should get on it ASAP, it takes a while to work.


http://www.medhelp.org/posts/Hepatitis-C/Am-I-grasping-at-straws/show/576858

I’ve also spent the whole time on tx watching my diet and insulin levels, but recently discovered (from Cowriter) that the A1C test will not be an accurate test for the anemic.
It’s measurement is based on blood cells, and since you have less it may be off by 10-30%.  www.labtestsonline.org/understanding/analytes/a1c/glance.html

HCV PEOPLE have higher statistical rates of IR and diabetes and much research now suggests a connection between HCV and the shutting down of the entire endocrine system, thyroid, pituitary, and pancreas are all effected. Since you are overweight, you may very well be Insulin resistant, have IR. This is a common cause of weight gain.
This and your stage of disease are two things that can negatively effect your chances as too short of a treatment course.

A more accurate assessment for your true IR risk would be to get a fasting insulin test to go with your fasting glucose, and then use an online HOMA calculator to get you HOMA score, otherwise, your blood sugars might be fighting your treatment without you knowing it.
The formula for HOMA= Fasting insulin X Fasting glucose (in mmol/L), divided by 22.5
(convert you fasting glucose to mmol/l before beginning the formula)

http://www.onlineconversion.com/blood_sugar.htm


It’s all pretty complictated but you can go to Cowriter’s Journal in here for a good primer on the whole topic. Basically, if you are at all Insulin resistant, then you will make too much insulin to try to correct that.
It’s technical stuff, but, Interferon is a CYP450 1A2 INHIBITOR....a WEAK inhibitor.  And insulin is a CYP450 1A2 INDUCER.  So basically, hyperinsulinemia (too much insulin) makes interferon much less effective and THIS then accounts for the higher rates of slow response amongst those with this problem, and you don’t have to be overweight for this to be true, though many are.

Regarding what most docs still think and concerning their data on non-responders.  I think they're calling some people "non-responders" when in reality they were slow responders. ... Or who may not even be sure whether they were slow responders or non-responders.
Years ago, viral loads were checked at baseline and week 24 on genotype 2 and 3.... and baseline, week 24 and EOT on genotype 1.  And the viral load test we used couldn't measure below 600.
(at week 12 I was still at 500,000…but I pressed in armed with some knowledge, and I’ve been UND for 68 weeks now, so there is some hope here.)

Nowadays many are being penalized because their odds may only be 50%, or 30 or whatever…or their treatment may take longer or cost more, but notice the odds were no worse, they did NOT go to 1% as previously..those odds are calculated on 48wks only. Important to remember that distinction!
The real issue should be can your mind and body tolerate the treatment if there is a chance you may clear the virus. The reason is, with proper precautions people can live 5-20 more years even with stage 4 liver disease. The key however is to slow the progression of the disease to help that happen, and that probably won’t happen if the virus stays in there.
Since liver transplants are getting harder to come by, and often end in complications or rejection if even available, it made more sense to me to try a kick viral butt but that of course is a personal choice you must make with your own soul, and family, and doctors help.

I hope the best for you. Don’t forget, PRINT your studies and go armed with the research supporting your requests.
It may

mb