Thinking of stopping tx "early"

[jelise]

Hi all.

Though genotype 1a, I had a fairly low initial viral load (500,000) and RVR.  My GI said I could stop at 24 weeks when he called me with my 4-week results, but I wanted to stick it out as long as I could to get the best odds at SVR. I don't know what stage my liver was at (no biopsy), but my enzymes had been elevated for at least 8 years even though I’ve been sober for 4 years.  I am also very overweight and feel I was underdosed with riba (1200 mg and I weigh 250 lbs at 5'7").

Now, after reading about all the risks of permanent side effects and studies that show no significant difference in SVR rate between 24-week and 48-week tx for people in my category, I am questioning the prudence of treating for 48 weeks.

Though my labs are still good (I’m very lucky I know), the side effects are rough.  I can pretty much handle the growing physical problems (years of experience in going to work hungover ha-ha), it’s the mental ones that are really messing with me.  I have worked overtime all through tx, but it is getting almost impossible to do any kind of decent job - and I really need to keep my job.

So, I am thinking of splitting the difference and doing 36 weeks.  I just finished week 29 of 180 Pegasus and 1200 ribavirin and have been 100% compliant.

If anyone has any studies or information to help me with this decision, I would really appreciate it.  Also, I know the SOC in some places is to stop tx at 24 weeks for 1a’s with low initial viral load and RVR, but I wonder if they give more riba there and if they shorten tx no matter what the patient’s weight and/or liver condition?

Thanks in advance,
Jelise

[CoWriter]

"He would self get treated 24 weeks, and he is Norway,s best doctor in treatment of hep C. "
---------------

I'm familiar with Dr Bent von der Lippe from the Oslo University Hospital in Norway.  I like him, he's very approchable.  Last year, he extended the treatment of a slow responder to 72 weeks after he read the studies I sent him.

Co  

[jelise]

Yes, thank you.  No panic attacks since last week.  Maybe I am climbing back up the rope a bit :)

[Bill1954]

Hehehe, don’t worry about waffling; we’re the Waffle House here :o). How’s things going today? Feeling any better?

Bill

[jelise]

Great idea!  I am the queen of procrastination - especially when it comes to making decisions =D

[jelise]

"I only missed 3 days and was very proud of the fact thinking "wow he's lucky I am so dedicated".  In hindsight now I see that there were days I would have been better off staying home as I was pretty worthless and would fall asleep on my desk."

Oh my gosh - that is it exactly!  I haven't fallen asleep yet, but I might as well be asleep considering how much work I am getting accomplished.  I've always been a workaholic and I feel so incredibly guilty for doing a crappy job.  I feel like I'm riding the clock!  I also worry about my boss starting to think I'm a "stupid, lazy bum".  He has not known me for very long after all.

My head is so messed up and I am so paranoid, that for all I know he could be thinking like your big boss and actually be impressed that I am showing up at all.  I did have a big discussion about tx and sx before I started and asked him if he would prefer I wait a bit to start (like until I got more into the swing of things) and he was all for my getting tx asap.

I told him I might stop at 36 weeks the other day and he was kind of taken aback.  I think he is actually all for my finishing LOL.

I really shouldn't try to make any decisions about anything right now.  I am on a rollercoaster.  I just gave in and started the wellbutrin less than 3 weeks ago, and just upped the dosage Friday. I hope this helps.  If not, shrink I started seeing has lots of ideas for meds.  I really expected to get depressed on tx because of my history of severe depression, but I have had more anger/rage issues though I have always been mild-tempered.  Since I didn't get depressed, I didn't push for ADs until recently.  Also, I had tried them all in the past and didn't have a lot of faith in them.  I'm ready to try anything now!

Some days I'm like "forget this - I'm probably cured already and poisoning myself for nothing".  Then other days I think "I wish they would give me more weight-based doses or let me treat longer".

I know for sure that I am sticking it out for at least another seven weeks.  By then, hopefully I will have the mental fortitude to continue.  I probably will.  I've just been in the midst of a pissy/end of my rope party.

Thanks again to all for the input and support.  I hope I'm not driving all of you crazy with my waffling :)

[nygirl7]

I just got this great job (finally) about a year before I started tx, and it is very important to me"

Jelise I had the same problem with my job.  The paxill helped me a lot but unfortunately between the lethargy and brain fog I was a mess. I only missed 3 days and was very proud of the fact thinking "wow he's lucky I am so dedicated".  In hindsight now I see that there were days I would have been better off staying home as I was pretty worthless and would fall asleep on my desk. My boss hated me and thought I was a stupid lazy bum.

Fortunately, his boss the big big boss of the company admired me for the fact that I came in when I should have been home. When the old boss tried to get rid of me (he found it harder than he thought because they can't just get rid of sick people that way) he stuck me at a desk with no work.  The big boss snatched me up and had me come up and work for him.

I've been working for him for four years now and been SVR for over three.

Hang in there.  I know how hard it is and how much it really ***** but getting  up and coming in to work gives you a sense of purpose. Just getting showered and dressed made me feel better than if I'd laid in my pjs all day.  I know how easy it's NOT, believe me.  But the time goes by fast and one day you will be done with treatment and looking forward to the future.  You CAN do it.  You are strong and I admire greatly what you are fighting for.

fight the fight as long as you can and if you can make it through to the end of treatment you'll be glad to have had those extra odds on your side.  It's not worth risking have to ever do treatment again.  It's easy for a doctor to say it's oK to stop early but in fact he doesn't have the disease.  Especially since you've had elevated enzymes for so long and are over weight and don't know how much liver damage you have - fight it out until you can't possibly do anymore.

(I had to do 72 weeks and it was dreadful but again - one day it was all over and I had succeeded.  Would I make the same decision to extend as difficult (i had drastic sides) as it was? Yes).

GOOD LUCK.

[chemister]

My doctor is specialist in hep C treatment and treated manny people. I had genotype 1 and 2, so my 2,6 log drop on 1 week (2 700 000 to 6300) indicate that most of my genotype could be geno 2. Anyway the big drop and my bodies rapid and good Tx from the drugs. He would self get treated 24 weeks, and he is Norway,s best doctor in treatment of hep C. I also get very ill from the drugs so 24 weks was the most I could/and wanted to go. I take my 10 % change. From 90-80 %.

[CoWriter]

Reasons not to stop early:
1.  For geno 1 who weighs 250lbs, Ribavirin weight based dose is 1400mg daily.
2.  Obesity is associated with insulin resistance and fatty liver.  Both are known to lower treatment success.
3.  Cirrhotics need to treat for 48 weeks and you don't know whether you have cirrhosis.
4.  Your comment...."years of experience in going to work hungover ha-ha".....alcohol doubles the rate of liver damage progression.
5.  Relapse is higher with 24 weeks vs 48 weeks.Tailored


From "Tailored Treatment for Hepatitis C" by Thomas Berg, MD........

"Summary of the current concepts of tailoring treatment duration in patients who have  hepatitis C virus type 1

Patients who have an RVR and low baseline viremia may be potential candidates for shortening treatment duration from 48 to 24 weeks. Around 10% to 15% of all HCV type 1–infected patients reach these criteria. The optimal cutoff to define low viremia (400,000, 600,000, or 800,000 IU/mL) in this setting is still unclear. As long as HCV RNA is undetectable by sensitive real-time PCR assays or TMA tests at week 4, however, levels of less than 600,000 IU/mL seem to be appropriate (more conservative physicians
may even choose 400,000 IU/mL). Because hepatitis C viremia may fluctuate in the natural course of the disease, however, it is desirable to have at least two measurements of HCV RNA before starting therapy to confirm low-level replication over time. To  exclude to the best possible level the presence of minimal residual viremia at week 4, which clearly increases the likelihood of experiencing a relapse, the most sensitive HCV RNA assays should be used when shortening treatment duration is considered. "

Co

[vik97]

Even though you had a low initial viral load and RVR, being overweight decreases your chances of SVR.  I think you should go for the whole 48 weeks to offset this disadvantage.

If I were you, I would take it a week at a time, without projecting too far ahead. Just concentrate on making it through the present week and procrastinate making a decision to stop. Before you know it, you will be done.

[CoWriter]

"My doctor tells me that I had 80 % change to SVR at 24 weeks, and 90 % if I get treated 48 weeks."
--------------------

He gave you the odds for somebody who starts with a LOW viral load at baseline and obtains an RVR (undetectable at week 4).

You RVR'd but at baseline your viral load was HIGH.

Co

[jelise]

Thanks Trish!  I can still solve a sudoku like no one's business :)

Maybe my problem is more about my crazy "I can't do it" or "I don't want to do it" attitude.
I need to work on my attitude for sure.  I will definitely check out the links for help.

cb867 - best of luck with your results!  I'd say 23/24 is pretty darn good :)

[Trish77]

If you have an understanding boss, that's more than most people and that's pretty good.  If you're able to handle the physical issues that come with treatment, that's also huge.  Seems to me what you're left with is the "brain fog" and how it impacts your job.  Theory is that brain fog can be dealt with using strategies and you might want to consider if there is anything about the way you're working that can be adjusted that will help you get through the next and last 12 months of treatment.  I did a google search on "brain fog concentration strategies" and came up with a whack of stuff.  These articles will of course mention to get off meds you're on that might be contributing to brain fog but you already know the meds you're on are part of the problem for the time being.

This one is simple but I liked it ... indicated there are LOTS of people dealing with brain fog issues.

http://www.cfidsselfhelp.org/library/lifting-fog-treating-cognitive-problems

This article has a link to "brain training games".  Some people might think this is hokey but .. I had very little brain fog on treatment - more than I knew apparently according to my daughters, but still - I had a very analytical job and was always busy doing "brainy" stuff.

http://www.associatedcontent.com/article/188256/top_tips_to_fight_brain_fog.html

I look at these kinds of cognitive-focused activities as physiotherapy for the brain.  

There are plenty more articles but that's a start. Just something to think about.

Are you also able to simply take this a step at a time and take it as far as you can or is it stop early or go the distance, nothing in between?

Good luck with this.

Tris

[cb867]

I was to do 24 wks I stopped at 23. I was type 2. So far so good. I had to stop due to severe mouth sores. I was UND at 4 wks

[jelise]

Thanks!  I was hoping to get information on both sides.

Wow, you had a seriously dramatic response to the meds eh?  Congratulations :)

I don't know if I agree with your doctor though.  If I thought I had a 10% better chance if I went all the way to 48, I would really try to go the whole 48.  10% seems like a lot to me :(

[chemister]

My doctor tells me that I had 80 % change to SVR at 24 weeks, and 90 % if I get treated 48 weeks. He tells that if it was he who was treated he would stop at 24 weeks,
No doubt about that.

[chemister]

I stop at week 24, I was a rapid responser with start virus load 2700000 and after one week 6300 IU/mL, and week 3 and 4 negative. My doctor recomand 24 weeks Tx.
We are all different and it is not right that all people with geno 1 need 48 weeks Tx.
The medication is also bad to the body, and mind.....

[Rockerforlife]

Like i said,if your sdes are mild now,your odds ahr high you wont have any post TX problems...GO FOR IT...you can always stop after wk 36 if your having a ruff time...i went tru 2 years of TX...and ok...no probs....maybe the stress,but this was all causes by other factors i went tru

[jelise]

Crud.  Diabetes runs in my family, so they have regularly checked my glucose on my CBCs.  They never checked my insulin though.  I am going to get one of those HOMA tests for sure - thanks!

I was wondering about insurance and stopping early as well.  I was going to make sure that the doctor himself ordered/approved it before I stopped to try and cover my butt.

I've got a little over a month to decide whether to go beyond 36 weeks, and my work is cut out for me.

I'm already starting to chicken out :(

[Rockerforlife]

I had the concern also about the fat taking with the RIBA and keeping the weight off,what i did was to take my RIBA with whey , avocoda,1 egg,i tablespoon olive oil with each doseand tru out the day i ate light..it kept me at a steady weight...and the fat content was 35 grams...this is enough ive read.

[merryBe]

OK, I would not want to be in your shoes...it's as hard as it gets trying to work through this tx....but that may also be the reason to not shave 3 months off treatment...because saving 3 months now could mean another year of treating again later!!

please read this journal and her other posts http://www.medhelp.org/user_journals/show/68011?personal_page_id=450

weight has been shown to be a determinant of outcome, the reasons are 2 fold, one is that insulin is higher as a rule in the overweight, and insulin lowers the effects of interferon. Two is the hcv hides out in the liver and fat cells, so more chance some will escape the meds I guess.  All I know is this bug is hard to kill.
If you had a viral load of 1 million, that meant you had about 50,000 virons in each drop of blood when you started. All those virons have to be killed.
the latest research showed as few as 20 virons reinfecting tissue. ergo, the longer you saturate with the chemo the better the chances...of SVR, which is the goal.
Particularly true with Geno type 1, which you are, so I would thinklong and hard about cutting 3 months off your time.
also, check with your insurance. If you do stop early, and need to retreat later, will they approve it?  I don't know, don't have a clue, but I would be concerned that if I had not followed the recommended course of treatment the first time, that I may not get approved the second time around...especially since it is looking like the second go round will include PI's and cost 70K more than current SOC.
life just is not fair is it...I second your sigh.

[jelise]

Alek07 - thanks for the link.  I am going to get a copy of the whole study to see if it has weights/riba doses/ages and such included anywhere.

Rockerforlife - I know it is irrational, but losing my job/new career/health insurance actually scares me worse than the risk of long-term side effects.  As for the weight loss, I took that one study that said that large meals (50 g fat) helped with riba absorption, and since I thought I was underdosed with riba, I make sure to eat lots of fat when I take it twice a day. It hasn't been very conducive to dieting :(

Trinity4 - I have tried numerous ADs, and am currently on Wellbutrin.  I cannot take much time off of work, and the load is huge and getting bigger all of the time because I cannot concentrate.  I just got this great job (finally) about a year before I started tx, and it is very important to me.  It is the main reason I am trying to weigh the odds/facts.  If I had an easily replaceable job, I would go the distance and just try to get Roche or someone to help cover my meds if I got fired and lost my insurance  

Becksta29 - my boss knows all about what I'm going through.  I discussed it with him before I made the decision to start tx.  There is still only so much time he can give me off of work and only so much he can lighten my load...

Thanks all for the support and input.  I couldn't make decisions even before tx, when I still had some of my cognitive function. **sigh**

[becksta29]

yeh i agree with rocker,kill the dragon n go as long as possible.why go thru all tht tx n not give it ur all n then if u relapse u will b kickin urself 4ever,well i would anyways.
is there anyway u can tell ya boss u have medical problems n get time off,i know its hard to tell people about the hep c but i have told heaps of people cos i was sick opf lying but u can always say u r on chemotherapy cos thts not a lie....the tx drugs r simalar to cancer drugs n its classed as a type of chemotherapy,i read it on a chemo site n interferon is used alot in some chemo's.
                    good luck in killing the dragon in what ever choice u make.

[Trinity4]

Rock, I re-read and think jelise was thinking about stopping at 36 weeks.  I'm still not comfortable with that.

[Rockerforlife]

If you stop now,regret will be hard to deal with,id rather deal with sides,not regret,just my thinking.