Support Groups and Real Life Worries

TO TREAT OR NOT TO TREAT?

I went to my first support group two nights ago and out of 12 people there 10 had treated. Every male who treated had horrible side effects, and in 3 cases so bad they stopped treating. The 2 women had very mild side effects the worst being loss of their hair. Of the 10 that had treated 4 had cleared the virus and the remainder had not and were contemplating whether to treat again.

I also read about the "long term" effects of the treatment, long after you are done treating and I just am leaning to not treating. However, all my life I have "fought things" head on, and that is what is so confusing.

I am 54 and have always had normal ALT/AST and my biopsy was last week and two pathologists have both read it out as GRADE 1 and STAGE 1 to 1.5. I am genotype 1b.
One of the expert doctors said if it was him he would not treat and wait until there is something better down the line, and said that would be about 5 years. The other doctor said he would lean to treat.

I am healthy in every other way. I am a busy trial lawyer and I run on the treadmill about 30 miles a week and that exercise is what keeps me sane. The thought of not being able to run, and possibly not even be able to walk very far would be very worrisome to me.

I wonder what you guys think should help guide my decision?
Any imput would be greatly appreciated.

[wklaw]

One last thing. My last HVC total was only 86,400 and I know that is very low and before that it was over 3,000,000. Someone has said because it is so low I have a better chance of clearing the virus? Is that an important factor in the decision to treat or not?

[hep62pj]

If you are only stage 1, dont drink much and are in overall good health, I would wait if I were you... i did not have real bad sides but I did not clear... and especially since you are geno 1, probably only a 50% chance that it will work anyway

no way i am going to re-treat with the current available drugs, i dont think there is much point, i have been told if you are a non-responder and treat again your odds are only 10% of clearing ... that is not worth it

[GoofyDad]

Glad to see you back. Of course, this is a very personal decision. To me, it all comes down to Risk/Reward. It sounds like with your lawyering, you may be putting more at risk than others would by treating, and with your lowish damage, you may have less reward to reap. A higher risk/reward ratio, if you will.

A couple random thoughts:

Don't bank on the 5 years for the new Protease Inhibitor drugs. Could be sooner, could be longer, could not work, could be added to today's combo therapy, ould be a miracle cure. Doesn't mean you can't watch the trials for a few years though. A lot more should be known in 12-18 mos according to my crystal ball.

Biopsies are not as accurate as we like to think. Small sample size can be an issue. I wouldn't bet the farm on yours being accurate. I would want another one, probably sooner than 3 years out.

Good luck.

[Algernon]

If it weren't for the anemia, my sides wouldn't have been so bad.  The anemia is hell though--if I'd known more, I would have been more vigilant about that early on.

Now that my amemia is more under control, I'm able to exercise every day--not as intensely as usual but I can come pretty close a few days a week.

This treatment ain't for sissies (which I am!).  But I'm on this site more at my low moments than when I'm feeling like exercising (I'm guessing that the support group is selective in other ways).

This is a very tough decision.  You have to calculate a risk/benefit ratio without knowing the numbers (who was that that compared predicting side effects to predicting the Superbowl?)  With you in spirit.  Deb

[Algernon]

Full disclosure.  I'm a 3a so my chance of response is (theoretically) better than 1a.  That factored into my starting treatment with a basically decent liver.

[beamishboy]

valid question & i am by no means an expert..but like you i have hepc type 1b;i am 50 yr old male in good health,otherwise,annd now into combo trx 15 weeks...startin viral load was 6,000,000 ;4wk vl 1280-so the meds are killin the vrus..and for that i am v happy...unlike yu my liver was at stage 2 maybe 3& grade 2..i was also gettin some debilitating effects from the virus-joint pain,depression,fatique...All that said,the meds are incredibly nasty-i don't like how i feel whatsoever:i have MUCH greatr fatigue becuz of anemia(hgb went from 16.5 to 10.1 in 12 weeks) i am just plain lethargic now.Oh also sick-not pukin sick,just a kinda constant malaise & irritable&depressed(go figure) & much lowered cognitive functions-i'm the guy w/ mouth ajar&glazed,puzzled expression lurking in your local video store....I mean trx is Doable & nobodys getting any younger-hint,hint-we all want to rid our bodys of this nasty uninvited parasite-but these are nasty toxic drugs& by no means a walk(or run) in the park.....hey,you do much pro bono work? just in case i gotta rob a bank to buy procrit.......Good Luck

[hep62pj]

FYI I had no anemia at all from virimadine phase III trial I was on... it seems that is the worst side of all so even though tx did not work for me, I hope that this drug will be out soon to replace riba for everyone suffering from anemia ...

but...does anyone know if virimadine is less effective than riba??  Maybe if I treated with riba/peg i would have gotten a better response... wtf knows I HATE this ****, I am just waiting and hoping for better tx right now...

[GoofyDad]

Couple more things from me.....

I've probably taken to treatment pretty well, comparatively speaking, though I have been bit by the anemia bug. I work in an analytical field, and I just plain am not good at it right now. No way I could be entrusted with someones legal case. It wouldn't be right.

On the risk/reward, that you are otherwise in good health probably cuts the other way - better chance of coming through well. But who knows?

Meant to mention this in your last thread, concerning the Can-do-man's crack about saving gas going to your support group. You'll have to forgive him. He knows not what he says. Until we set him straight last week, he thought a support group was a club where they discuss the merits of using spandex vs. underwires in womens undie-thingies.

[anise]

I sure know your decision to treat or not to treat.  It took me almost 6 years to decide.  I was not going to treat, but then I got my biopsy last October and it was a 2/2.  So I decided to treat.  

Honestly, if I was a less than a biopsy 2,  I would not have treated.  Doctors at the UW, and my doctor said if my biopsy was less than a 2, I was a genotype 1, and normal Alt/Ast, they wouldn't advise treatment at this time.  But since I am a genotype 2b, grade 2 stage 2, and female - they said to go for it.  I took my first shot last thursday :)

It is a very difficult decision and it is so individual!  I wish you luck in your decision.

[can-do-man]

Yeah and the next thing you'll be telling me "to treat or not to treat" has nothing to do with halloween.

[beamishboy]

and your wearing a costume? Here i thot your mom just dressed you funny..

[jmjm530]

wklaw said: One of the expert doctors said if it was him he would not treat and wait until there is something better down the line, and said that would be about 5 years. The other doctor said he would lean to treat.
-------------------------

That about sums up the opinions you'll get here as well :)

Some good reading are articles 2 and 3 in an aptly called series "controversies in treatment". Free Medscape registration required but worth it. Keep in mind the articles are a couple of years old so the newer pipeline drugs have not been fully factored into the respective arguments.

http://www.medscape.com/viewprogram/2053

Your age, stage and health are both reasons to treat and not to treat. I'm 59, 1b, stage 3 and in my 52nd of 60 weeks. If I were 54 and stage 1.5 I'd probably wait at least a year to see how some of the newer drugs pan out in terms of preliminary cure rates. I was also very active prior to tx but after a couple of weeks I was humbly put on a couch and remained there for much of treatment.

Best thing is to learn as much as you can, by visiting different sites for different perspectives. If you like studies, etc, the Projects In Knowledge web site is a good read.

Should you wait, as Goofy suggests, it's important to follow-up on your biopsy read, as fibrosis can sometimes progress faster after 50. In your case, I'd highly recommend a yearly non-evasive Fibroscan with a follow-up biopsy in 3 years. Fibroscan is now in trial at several U.S. locations. If you do go to Boston, try and see Dr. Afdhal who is also on top of many of the newer trials.
http://www.clinicaltrials.gov/ct/show/NCT00125762?order=1

There is no right answer but if you do decide to treat, try and be realistic what you may or may not be able to do, including a full work load. Some of us can work full-time, some can't. I couldn't.

All the best in your decision.

-- Jim

[jmjm530]

Goof said: No way I could be entrusted with someones legal case. It wouldn't be right.
-----------------------------------------------

I can't even be entrusted with my meds lately. For my second ribavirn dose today, I either took 600mg ribavirn(correct dose) or 1200mg. I should know in about an hour. If I climb the walls, the dose was correct. If I hit the ceiling...

-- Jim

[PKCO]

It's good that you are exploring the issue. I agree with the expert doctor who said he'd wait given your situation. The other doc's opinion (was he a hepatologist ? ) does not suprise me. Most GP's are taught to treat disease when they find it.  They are the worst offenders of the 'rush to treat' mentality. Alot of gastros have adopted that mentality as well. Many docs  let the insurance companies dictate the treating algorithms. If possible, I would try to go the hepatologist route. You are more apt to get an answer that is objective.

If I remember right you have been infected for a long time and have little progression. In my opinion, and that of many hepatologists, treating given your personal situation (age,vl,progression,length of infectivity,etc) would be exposing yourself to possible risks whereas a more prudent approach of "watchful waiting" makes much more sense. The odds are you never will have to treat because of hepatic dysfunction. Unless you chose to do so.

Before a decision is made to treat everyone should read the drug's prescribing info. I cannot tell you how many people I have met in support groups who were there to find out if their personal side effects were normal. One couple brought their son in recently who were madder than heck because the tx had taken away their son's vision. When it was pointed out that this info IS in the prescribing info they re-directed their anger at the treating doc for not telling them about this risk. I know you were worried about possible long-term and permanent damage. The list of all the known (the list keeps growing) long-term and permanent side effects are in the prescribing info along with their statistical rate of occurrence. The one at www.schering-plough is easy to read so I suggest that site. Both interferons being used are different meds but their profiles are almost identical.

Best of luck in your decision.
Regards,
PK

[OnAPrettyPoison]

I certainly am not qualified to tell anyone what to do.  I decided to treat early because of my age (45 when I started), low damage, ability to work a flexible schedule (haven't had to), good insurance, being a female =  a better chance of SVR.  My personality type would not let me wait around for maybe better drugs.  I think it would be much harder to do this in my 60's than now!  I have 1A, 108,000 starting VL, cleared at 12 weeks, and still clear at 24 weeks. I did have elevated liver enzymes before starting. I certainly didn't know everything then than I do now, but all in all, I have done things that sucked worse and lasted longer!

One other thing to consider is my NP told me the patients that went to the support groups tended to not be doing as well.  The ones like me who still feel pretty well don't bother to go.  She told me she wished I would go - my positive attitude made a world of difference in how I felt.  I have had anemia, low WBC, and general fatigue, and I am shedding worse than my pup dog, but not much else.

The others are right, research it - don't jump into a decision.  I jumped in with my usual battle cry without thinking.  I don't know if I would have done any different, but I maybe should have thought harder about the impact treatment has had on my life.

[strator]

wklaw- Tx is a very personal decision. Type of thing 2 parties could have identical geno, stats etc., throw in 1 variable factor like economics, family life(the whole family can be affected by it), or just plain old personality type, and 1 treats the other doesn't. Yet both may very well have made the best right decision for them.
I took 2 yrs to make the choice to start, including joining a support group 6 mos before I decided. Between them, my doc, fatigue that was creating QOL difficulties, therapy, reading, and my friends in recovery(some who had done tx),and a lot of time in the chapel, I made my deciison. 1a, grade 2 stage 1 to 2: Did I make the perfect decision. Don't know, but I do know I made the right decision for me at the time. I had momentum going focusing on it, felt mentally and emotionally healthy and finally just plain KNEW I was ready to go. In retrospect I'd of done more preparation in some logistical areas such as financially. Some days I'm not sure about the decision, but I'm learning patience.  I went a lot with a suggestion that in my early 50's, my grade and stage, it was a good time to go for it before further progression. My viral load was practically doubling each year and I probably gave that too much weight. The support group helped me a lot because there was a wide variety of stages including people who had already had transplants. their advice weighed a lot with me, not to fit in, but because as pro tx as some of them seemed, they are a caring, inspirational, yet realistic bunch, lot of heartbreak in that group. But they didn't hide the 'possible' brutality of tx, physically and emotionally.
Wishing you a good thought that your decision is the right one for you, either way.
Don

[strator]

Forgot ya ther Goof-
Now FINALLY it all makes sense. Since we first started on this  sordid little vacation called tx, I've been trying to rectify the very observant, intelligent, graceful, caring dad, I've seen in your posts--with the ribald, bathroom focused, orifice of the day, listen up ladies, down home, no need to cut the grass, Goof that I see in your other posts. NOW I get it...
it's job related. Now that I know read your post saying you work in an anal something field. Man, glad that's rectalfied!
:)

[GoofyDad]

Good guess - but wrong, my insulation wearing artmeister. Turns out I sometimes leave the computer logged on, and I've come to discover the wife has been posting her raunchy and sordid attempts at humor in an effort to discredit me.

You see, she happens to be strongly against that Italian study. I think I could get more support from stradling an over-cooked lasagna noodle.

[Tallblonde]

I would suggest getting a FibroSure test done ASAP to see if it correlates with your biopsy results.  Your family doctor can order this simple blood test if your GI won't.  I've pasted below a link to Labcorp.  Once you're there, you'll find the Fibrosure link listed if you scroll down a bit.

Good luck to you.

Susan

http://www.labcorp.com/services/hcp/hepatitis/

[wklaw]

I am overwhelmed by the kindness in all of the replies to my difficult decision.
I am trying to research the therapies coming down the line, such as Vertez 950 and there is no way of knowing how long they will take.

I have printed out all of the responses and will read them many times and read the articles you mention.
I was thinking when I was reading these comments that I didnt have a biopsy for 54 years and I was feeling fine and I have had this for 53 years and maybe if it only is a Stage 1+ now the risk is not too great to weight and take regular blood tests and another biopsy in 3 years???
Thanks a million for your words of wisdom and support and it is clear I have a ton to learn before I can make a final decision on treatment.

[strator]

I 'studied' an Italian once. She said almost the same thing..."I think I could getta more support from stradling an over-cooked elbow macaroni!"

[wklaw]

What makes it even more complicated is that I did have a FIBROSURE TEST and it came back a STAGE 3, but then it said that DO NOT USE THIS TEST IF YOU HAVE GILBERTS SYNDROME, which is what I have had since 1977 and that invalidates the test or what they said is it would mean that result of that test is between a 1 and a 2 "staging" but NOT to rely on FIBROSURE if you have GILBERTS DISEASE.

The one thing that turned out to be "easy" for me was the liver biopsy and I guess I could continue to take blood tests every 90 days to see how my Viral Load and ALT and AST are doing and then do another liver biopsy in 18 months or so??? If there is no progression I could continue to wait and if my fibrosis got worse I could treat then???

[Cbueno]

mr law... I'm also 54 and have very similar ast/alt bx reads...grade 1, stage 1, type 1a.. my profile is pretty much the same as yours... I found out i had hep c 6 years ago and every 6 months do a full blood, every 3 yrs a bx, have seen several heptologists at ucsf, ucla, top dogs at sloan, you name it i've done it...

most western medical cowboys are spring loaded to TREAT... they all should be required to check this board once a week and they would re-think what they are saying. when you get your blood work, bx, fib, etc you need to take charge and know it better than your docs... there are people on this post that are far better informed about the success/sides/quality of life/ long term pros and cons after tx, etc.

i'll continue to do my blood every 6 months, live like an olympic ath. BUT I WILL NOT TREAT... if I ever get to the point where my liver is failing, which i highly doubt, i'll deal then.

I will not blast myself with this stuff when i feel pretty fine. if my mind gets a littel hazy and my blood/bx reads are the same i'll chalk it up to genetics....

don't drink or smoke and get some tail.

[GoofyDad]

wklaw, please forgive this interuption, but as you can tell from the title, this is a matter of some delicate urgency.

Seems I've had a stomach bug for a couple days, and it's now running its course.....right through *me* that is!

Like the river through that <a href="http://www.paconserve.org/index-fw1.asp">Frank Loyd What's his Wiener</a> house.

I took some pepto but won't take more, in part because I used it all up, and in part because it has asprin and I have low platelets. I discovered some Lomotil in the cabinet, so maybe I'll give that a 'go' next. Question is, will the riba I take get absorbed through all these waterworks? Maybe for now I'm better off to take the riba without food?

Past experience says this unfortunate condition should 'pass' in a couple more days. I hate to go down that Lomotil road, since prior to this my daily movements were not unlike the passing of diamond encrusted eggplants. Perhaps you can feel my pain?

[wklaw]

I hope someone can provide some insight to this fine gentleman who is having an immediate problem that needs immediate answers. I wish I had a clue what to tell you but hope this problem passes quickly.

I really appreciate comments and the fact that there is someone else "thinking" the way I am leaning helps me out. I have lived my life for 54 years without alcohol, cigarettes, and I am in good shape with exercise and I havent eaten red meat for 15 years. I know that this MAY mean nothing, but my "head" tells me that this means my liver hasnt been dealing with a lot of bad **** going through it that most people put their lives through.
I am praying that this is why the Hep C has not damaged my liver as much as others. I could be fooling myself.

However, I just read about the impact on most peoples bodies from this treatment designed to cure people and I wonder if this is something I want to do at this point, when at best there is a 50% chance of success.

I am so happy for the success of those that have endured the treatment and have "cleared" and I admire each persons courage and committment. I just am wondering whether this is the right course for me.
I have learned to go to these message boards DAILY and I am reading EVERYTHING I can get my hands on because I want to make the "best decision" and I know that even when I make it, it will only be an "educated" guess that will prove right or wrong down the line. I wonder how everyone gets through the "anger" and helplessness" and "why me" part of this disease. I am finding myself getting depressed over the weight of this decision and wonder how the people on treatment deal with the depression and related side effects. You guys are great.

[PKCO]

cbueno says:

"most western medical cowboys are spring loaded to TREAT"

Can I have your permission to use this ?

LOLOLOLOL

Best regards,
PK

[harty29]

Even though I just started posting........this board has been my support group since week one.  The humor and advice and suggestions have helped tremendously.

[bobbyullc]

if you have had this for 53 yrs and are only a stage 1 you sound in real good shape. i decided not to treat at stage 2
7 yrs ago and am not sorry. the tx breakthroughs in just the last years have been great. you mey have to treat in 10 yrs with a combination tx but i bet it is for only a fraction of the time and with a better chance for svr. take all the time you need to decide and try not to panic.
luck
bobby

[Mister beagle bailey]

Harty-- Welcome to the forum, you will find much help and knowledge here. Those on the forum have always been here for all seeking help, advice, and a shoulder to cry on when needed.

good Luck,

  Beagle

Kalio1/ wklaw--- I agree with what Kalio1 said, and you will have to weigh what is right for you.
Kalio your done with treating right?  How are you doing?

   Beagle

[Mister beagle bailey]

Won't know if my HGB has gone up till Tues. when I see the Dr.
Don't worry you won't relapse, you will be fine.  Wow last shot I bet that's a great feeling.  I'm a sun lover and can't wait also to get in the sun.
I'll be thinking of you tonight when you do your last shot, tonight is #8 for me.

   BB

[mjellk]

Hi, my stats are similar to yours, however, I am genotype 2b.  I've decided, along with 2 out of 5 hepatologists, to wait atleast another year before deciding on treatment.  I've been told to follow NM-283, VX-950, and Viramidine over the next year.  I've done the FibroSure test, along with a catscan, and they were both negative.  The biopsy, well, again, I'm waiting.  One of the doctors indicated that in addition to complications from the procedure, they results are , at best, somewhat misleading.  Not only depending upon who reads the results, this doctor felt that several samples from different areas of the liver are necessary in order to get a true evaluation.   I don't agree, or disagree...but, for me, right now, not treating is my answer.  If my numbers were different than what they are, and my health, and lifestyle, were being affected...then I'm sure I would feel differently.  I've had this for approximately 20 years and feel as if I have good health, and time, on my side.

I admire everyone that is, and have, gone through treatment.  It's not an easy decision to make and I respect everyone's decisions in whatever they do.  

Here's to good health and an easy treatment day.

MJ

[jmjm530]

Law,

Anger and helplessness is the beginning for many of us. With time and knowledge comes action (be it to treat or not) and most important, acceptance -- which is universally important -- whether it be Hep C or anything else in life. Things always can be better, or worse. End of sermon :)

Kalio,

Didn't realize you were so close to the end. Congratulations! I hear you on the possibility of relapse -- kind of going through that myself and still have ten weeks or so left. Anyway, I can tell you're a fighter, so you will do well regardless. Geno 2 right? Odds are very strong in your favor.

BB,

Good luck with your hgb on Tuesday !

-- Jim

[Mister beagle bailey]

Kalio1-- Didn't relize you are geno 2, that's what I am.

Thanks Jim...


             Beagle

[Mister beagle bailey]

That's the spirit, You WERE geno 3A!!!

                Beagle

[NYgirl]

If the sole reason you decide not to treat is the possiblity of side effects...I'd just tell you that is not a wise move.

Whether you decide to treat or not is your personal decision, but we were ALL WORRIED about the possibility of horrendous side effects before we decided to treat and after treatment found out that for the most part they were very tolerable - or at least doable.

AT 54 your liver is not in horrific state but if you plan on waiting for the POTENTIAL that there will be drugs in the next 5 - 10 years....NOBODY knows if they will pan out yet and they may never.  

It really comes down to the fact that in the next few years you may have time to wait. On the other hand nobody can say just what will happen to your liver or not.

It's a personal decision but...worrying about side effects should not be how you decide to treat or not.  

Just my decision.  PS I was notified I was a 2/2 (In reality am a 2/3) and just knew I did not want to live with this in my body if I had any chance of passing it on to someone else in the future. That over rode all of my own personal fears.

Best of luck.

[strator]

wklaw - Sometimes the best path to acceptance(and the ensuing search for the solution) is simply recognition.

As a 6th grader I'd gone to the grammar school playground up  to play basketball with my friends. Some local 'toughs' including a pretty big 9th grader w/a rep for being outright mean and nasty were there. One thing led to another and he took my basketball. It came to fisticuffs. Needless to say I got my a$$ kicked. When one of his fists w/a sharp ring cut my face open, I'd had it. I turned tail and ran the 2 blocks home, directly up to the bedroom I shared with my 9th grade brother, unquestionably the best fighter in the neighborhood despite not being much bigger than me. I stood in the doorway dishelved, bloody and crying uncontrollably. My brother, on the top bunk reading a comic, never looked up. He just said.."What's the problem?" In between tears and deep breaths I raced out all the details about the BBall and  how it wasn't fair George _____ a bigger older kid had beaten me up. He never looked up from the comic, he just said.."Sounds to me like like the biggest problem is you don't have a basketball anymore not how ya lost it. If I were you I'd go back and get your basketball."  Well I idolized my brother so I ran out the door and trudged right back up there. I wasn't comin home w/out my ball. They shook their heads as they watched me trudge across the ballfields towards em. I walked up to him, slammed my hands in his chest and cried 'Give me my D** basketball!" He looked at me in disbelief and probably out of boredom he said 'Here baby!' and hummed the ball down the field for me to chase. I brought my ball home. Got an extra gift too. Word spread in the neighborhood I'd stood my ground against one of the big guys. Nobody talked about why he took my ball or the unfairness. Just that I got my ball back, and some new respect. My brother had put my focus where it was needed.
(A little side note- 3 weeks later a friend came over and told me my that morning my brother got 5 detentions after he slammed George against the cafeteria wall and pummeled him for messing w/me. Guess he figured the why of my incident was his problem.)

When I opened up about my hep at a recovery meeting, asking 'why me', a friend came up to me and said..."Why not you?"
A few months ago I turned around at recovery meeting..there was George, the big kid from the playground. He nodded and smiled.
My acceptance got a boost that night. Didn't matter what brought me or George to that meeting room, we were both there on even ground, working on a solution.
May you find your path to heal,
Don