Treatments Continue or Stop?

[BABell]

My husband sub type 1a,has been on treatments for
24 weeks, Peg Interferon 180 ml 1x wk. & Ribavirin 1000 mg
daily. When he started treatments he was basically feeling
ill all the time, now on treatments feel the same except the mental and moods are worse. He has dropped about 22 lbs, which
puts him at 138. He was diagnosed 4 years ago with HCV, biopsy
showed moderate to serve cirrohsis. Has had continous medical
follow up visits, tried treatments 2 other times could not
tolerate and stopped 6 to 8 weeks after starting. His viral load
was 6 million when he when on treatments 24 weeks ago, approx.
1 week ago blood work showed his viral load at 10. We thought
this was great, not the Doctor he said he is a slow responder
and would recommend treatments for a total of 72 weeks.
The most disturbing thing that was said, was that he only by
statics/research had a 2% chance of the HCV NOT coming back
if he gets to the undectable level.
I am looking for some thoughts on what you would do or maybe
you have been told the above and decided to continue for some
reason that I might be not thinking about. I do not know
which way to encourage him to go. The 48 weeks I think he
should finish and let his liver rest but another 24?
Thanks for any information.
Barbara

[cuteus]

I wish you the best of luck in whatever you decide to do. I can't comment on the 2% chance that the hcv won't come back,  but I would ask the MD what he bases this statement on.
If you decide to continue over 48 wks, which I am also doing (but I take Pegasys), make sure he is actively treated for anemia if his hgb is below 11. The anemia causes so many disabling symptoms, that they would be a big reason some would quit tx.  Insist on Procrit so that he can continue with the least sx possible.  do  a web search for anemia's symtoms, and if hubby has many of them, ask for intervention. Without Procrit< I would not be on wk 64, and working 35 hrs.  I think it makes for a more successful treatment.
best to you.

[donAlfonso]

A couple of points:

1. Your doc's cure rate number seems very low to me.  I doubt that many of us would treat if that were the case.  Ask what studies he is citing that show 2% chance of SVR (sustained viral response).  I'm betting he pulled that number out of a hat.  It certainly didn't come from the NIH.

2. Statistics are meaningless to an individual. Unless the odds are 100% against, someone is getting cured.  It might be your husband.  I think your doctor needs an attitude adjustment.  How can you or your husband maintain hope and a positive attitude if your doc is speaking doom and gloom?  And unrealistic doom and gloom at that (see pt. 1).

3. What is now clear is that extended treatment works better.  BTW, I am a 1a/b (depends on which doc you ask), and I didn't clear til week 32.  My doc and I are now planning to continue tx for a total of 84 weeks (1 year beyond "undetectable").

4.  For most patients this tx is not easy.  I admire your husband's courage and determination.  And yours for sticking with him.  Somewhere between 25 to 50% of us go on antidepressants, which he may want to consider.

5. Regarding the viral load, 10 is GREAT!  Tell him I said to go get those last few f***ers!

dA

[donAlfonso]

We were both typing at the same time. Glad you thought to mention Procrit, which I just started yesterday, duh.  I hope it works for me.  My hgb was between 10 and 11 for months, and I'm hoping many sx symptoms are from anemia.  I got offered a part-time job today, I have a few weeks to decide, hope I can feel strong enough to take it.  Glad to hear you sounding so good. Week 64, that's way cool.  You're in my book of heroes.  

dA

[DoubleDose]

Here are my thoughts:

  If your husband is currently at 10 IU/ML on the viral load PCR, then your doc is right, he IS a slow responder, and just about to cross the line to being a POOR responder.  Usually if you clear by week 12 you are considered a normal, or typical responder, and will continue for 48 to 52 weeks to obtain a good chance of SVR.
If one is fully UNDETECTED after week 12, but before week 24, then this is considered a SLOW responder, with lower odds of SVR.  Usually these responders will now go for 72 weeks, and this does seem to increase their odds of SVR considerably....maybe to 70% or 80%.
In your husband's case, he has TECHNICALLY crossed the line for slow responders (past 24 weeks) to where becoming undetected after 24 weeks usually means only 2% to 3% odds of SVR,  IF continuing to the standard 48 weeks.

In your husband's case two things might be considered, and have huge impact:

1.  Since he is CLOSE TO UNDETECTABLE now, then the 72 week extended treatment MAY give him odds of SVR that are closer to 40% to 70% range.  The old 2% rule was mostly based on just finishing the 48 weeks...and for people getting clear after 24 weeks this is just NOT ENOUGH time to become SVR...hence the 2% quote by your doc.

2. His dose of interferon might be INCREASED, which would increase the decline curve for the virus, and possibly multiply the odds of success IF he also goes to week 72.  He probably should have had a dose adjustment early on, to compensate for his slow response curve.


If he gets undetected in the next two weeks, he has PLENTY of hope for SVR....just increase the interferon dosage., and extend tx for as long as possible...perhaps to 80 weeks or more.  If he stays undetected until the end of tx, his odds should be very high!!!! (maybe 80% or more)

Ask his doc to read this, and comment!!!

I did the above, and got my SVR.  Good Luck!  Don't Quit!!!!

Doubledose

[DoubleDose]

PS:  

Also, it is obviously important to keep the Ribavirin dosage at the maximum allowable for his body weight, in order to maximize the odds of SVR.  If problems develop with anemia, Procrit has shown great effectiveness in allowing continued full Ribavirin dosing, and keeping anemia from reaching dangerously low levels.  The side effects of tx are greatly reduced using Procrit, for many who tend to become anemic on tx.  Also consider anti-depressants with your husband's doctor, if you have not already.  His situation is so much a BORDERLINE case, that with some aggressive 'tweaking' he may just get his SVR.  This is no time to fold up the tent!!!!

[MajNeni]

Dear Barbara,
I am thinking a little outside the box here, and want to ask you to get a copy of that Viral Load test result.  Is it a qualitative, or a a quantitative test?  Is your doc very experienced treating HCV, or could he be reading it wrong?
There is a persistent thought in my mind that the test may have been misread, and that it really refers to a lower limit of detection of 10 IU.  It may for example say the result is <10 IU/mL?  That would in fact be an undetectable, and at a pretty low level.  
Please let us know; I sure hope I'm right about this hunch.
If not, trying for "Clear plus a year" seems to be the new paradigm; the odds on your doc's old charts are for the 48 week, cookie-cutter approach.

[LvdByGod]

I would completely agree with doubledose and majneni...only i was thinking perhaps the 2% odds would be "if he stopped meds now at 24 weeks,"EARLY", which would be only half the recommended time of tx for a "normal" responder...so if he's "slow" the odds would be low if he stopped now...

also add in the fact that he started and stopped a couple times...i'm sure that lowers his odds...but, either way, what the dr is saying makes sense...i just don't know if the odds are that low for his situation...the dr has given you his opinion...which to me sounds right...

but,like maj said, be sure and make sure doc can read the test, my GI admitted to me that those tests were hard to read, he himself was going to check in on the interpritation of the number....

is it 10? 10,000? 10 mill? the way they worded my heptimax test was very confusing and had what looked like 2 different readings...one looked like it was saying less than 5 virus' per i.u. and the other one looked like it was saying to multiply the number above...which was 5, which we figured out would be 5 million...you'd think they would let the dr.s in on how to read the results...so goofy...

if your hubby is higher number than he's suppose to be just do exactly what your dr. said and go the 72 or the get clear and go a year thing....the point is that you must remain clear for along time after initially being pronounced clear...because less than 10 does not mean zero and if one virus is hiding somewhere it will be bouncing back as soon as you go off meds...

i was pronounced clear...and then my numbers went up again...now i'm going to find out what to do...via hepatoligist...instead of GI...

P.S. GETTING A SECOND OPINION BY SOMEONE WHO IS MORE OF A SPECIALIST IS ALWAYS A GREAT OPTION... YOU WOULD NOT BELIEVE HOW MANY DR.S ARE NOT UP TO SPEED ON THIS DISEASE...

i'm concerned about you guys and would do the "better safe than sorry thing"...esp. since his liver is in poor condition...even if he does not clear at least, like you say, he will be giving his liver more time and rest...and also be sure to beat back those tx sides with proper meds as mentioned above!!!

sticking with us will help too!...everyone needs support to get through this ride...have him "toon in" here when he can...this board has given me so much strength...and you feel like your doing it as a group or team...it would be sad to try this on my own...i thank God for these friends here...

i pray for his ongoing clearence and ability to stay on the treatment...sandi

[tina-b]

I have the same gut feeling MajNeni has. Get a copy of that test! Read it yourself. Reading them can be very confusing at first if you don't know what you are looking for. (Docs read test wrong all the time)

Has he had other tests PCR (checking for hepc)? If he has (and he should have) get those as well and compare the drop in the viral load yourself.

You should get copies of ALL his medical records. Most of us here have learned the hard way to keep track of our own medical history and blood work. Nobody, and I mean Nobody will look out for your husband's best interest but you and you need all the labs in hand to keep an eye on things so you can ask the right questions because most of these doctors will not offer up information unless pressured with the right questions.

I will echo what all others have said.....longer on this tx is better.

Get those (ALL) test results (you can go directly to the lab that drew them for copies) and good luck to you.

Keep us posted.
TinaB

[Lynne5477]

I am now confused.  I thought the VL tests only reported results as low as <10 or <5.  I've never heard of one that actually reported ZERO VL.
   Also, I believe up til about 1 1/2 - 2 yrs ago the tests only went as low as <600.  Either way these numbers were considered to be undetectable levels of virus in the system.

BABell,
  I, too, am a slow responder (VL 370 at 12 wks and <10 at 24 wks) but I am now stopping at the 48 wk mark. I've read a report that stated it best to continue for 36 wks after being undetectable but my doc doesn't prescribe the theory of going over the 48 wks in most cases.  I did talk her into letting me extend if I wanted to.  

However, since your husband does have some liver damage it seems it would only benefit him to continue the extra wks (or at the very least continue til he can't take it anymore).  One thought is that you don't ever want to have to go through this tx again if you can keep from it.

Good luck to you both.

[DoubleDose]

If you are serious about getting the SVR then you need to do some quick research on relapse rates for late responders and discuss with your doctor.  Being a late responder, and only going 48 weeks will dramatically reduce your odds of success.  The 36 weeks beyond clearing rule is a pretty well accepted rule, BUT many docs will have their patients go for 52 weeks AFTER clearing, in the case of late responders.  They have a much slower viral decay curve, and it may take up to a year AFTER tests show undetected in order to get every remaining virion.  Remember this:  As you are reducing the number of virions in your total system (blood, liver, etc), they are each actively reproducing as they are being reduced.  So you never are dealing with 'static' numbers.  There is a 'dynamic process' that is happening which necessitates the long tx process AFTER initial so-called clearance.  This (undetected test result) only means you have 'less than 10, or 50, or whatever test measure is used, PER ML of blood.  Multiply this number by the systemwide volume of blood, AND the liver (intangible number of virions), AND realize that the remaining virions are still replicating aggressively, and you understand the need for very long follow through of tx after undetected testing.  

Good Luck!!!!!!

[TnHepGuy_]

The most important factor realted to your husband's decision has to be the current status of his his liver, which you state "<i>showed moderate to serve cirrohsis</i>".

First, he needs to stay on treatment to try and eliminate the virus to prevent the continuous inflamation/damage being caused to a liver that is already in a severely damaged state.

Secondly, he needs to stay on treatment to try and halt and/or reverse the progressive damage that has already occured.

There are no guarentees that either of these will work - his odds are made extremely tough by being cirrhotic. But his best  and only real chance is made possible by him staying on the medications. Make sure that his doctor works overtime to manage his side-effects. If he is losing weight, he might need to suppliment his diet. If he is having anger/mood issues, he might need to be put on (or change) medications specifically for those concerns.

He is a responder to the medications - that is proven by his current PCR level. His status as a cirrhotic may well be the reason that it has taken so long for him to get to that point. It is also all-the-more reason for him to continue on - and fight as best he can for the health of his liver.

He needs to extend his treatment to have the best shot at both viral elimination and liver health improvement.


TnHepGuy

[cuteus]

that is so kind of you  to post me in that book, considering that you hung in there until you got the last of the troops!
and now going even longer than I will.
What a trooper. SVR is yours, determination earned that one for you.
I Just met your female counterpart at another forum, finally tested negative at 11 months and now going for at least another year, I believe this is not her fisrt tx.
The determination shown by individuals like you and her, pioneering hcv tx and expanding the tx frontiers, will be the motivation of the many slow responders after you.

[Califia]

What an extraordinary thread, boys and girls.  Everyone profits from eavesdropping on discussions like this.  Thank you.

[BABell]

First of all I want to THANK EVERYONE for their respone.

I thought I was fairly informed on this HCV nightmare,
but needless to say, not as well as I need to be. I will
ask the questions about increasing meds, I have already
mentioned Procrit and the Doctor said they do not prescribe
it unless his blood levels are extremely low. We are waiting
for results right now and believe me I do not wait long
with out calling. I have copies of all blood work, ct scans and
the liver biopsy. My husband has been on an anti depressant
for probably 20 wks. I am going to list the blood test results for his last HCV RNA BT PCR. It say , not < or >, out to the side it does say Normals: Units: IU/mL. His Doctor said the
results are just 1 point away from what is condisered non-
detectable. What I did not know, among many other things was
that you had to remain on it so long to be sure you have
killed all the virus. Again Thanks so much for all the
information and I wish every one the best.
This is a rough thing to deal with, for me to watch how sick
my husband is and for him to be so sick. My heart goes out
to anyone that is dealing with this nightmare.
Barbara

[cuteus]

it just irks me that mds only look at a piece of paper when making the determination for Procrit. They need to look at the PERSON in front of them. Listen to the symptoms  they are feeling to decide whether to add the procrit or not.
telll your hubby to complain of chest pains(left), that will get them to listen. it worked for me.

[Califia]

Cuteus, I've found your arguments for Procrit really persuasive.  I want to see my hgb rebound on its own, but if doesn't in a month's time, I'm there.  I think my own confusion still has to do with not completely understanding the origin of all the various sx.  Chest pain, for example.  Yes, I'm having it--but I'm also experiencing acid over-production like never before in life.  I mean, constant stabbing pains in the area of my collarbones--go figure.  So Prilosec was prescribed, and I take it when things get intolerable, maybe not enough, and it helps maybe a little....but who the heck knows.   So is this x or is this y?  And no one has suggested that I do another EKG.  Does any of this sound familiar?

[cuteus]

an ekg won't be a good diagnostic tool, especially in females.  I had a stress test with the thallium, and I guess it was good, since the cardiologist did not ask for further tests. females are unique in this system and the tools that work for males are not effective for us.

I know about the acid stuff, I thought my chest pain could be that also, but after reading what anemia can do to your heart, and with familial hx of cardiovascular disease, I was not going to chance it. I have not had that pain since starting the Procrit, so...maybe it was the initial stages of a heart condition, too early for detection with today's tools?  The lack of sufficient oxygen puts tremendous stress on the heart, I am not waiting for someone's magic number.  It might be too late for ME!  I hate when they group everyone  into one herd. the 9's get it , the 10's don't even if you are on the verge of a heart attack.....ok...I'll stop rambling...
just keep a keen "eye" on your symptoms... but I.hope things improve on their own.

[Califia]

Thank you, o wise one.  I will take everything under advisement, as the judges say.   I keep a close watch on this heart of mine.....

[BABell]

Again more interesting information. My husband has/does
complain ocassionally about pain on the left side of
chest. This has been mentioned to his Doctor, maybe
not strongly enough but it will be.
Thanks,
Barbara