Should I or Shouldn't I - Tx

[domusic]

Well guys, I’ve watched this forum with great interest for about two months, when I got the dreadful news of being infected with Hepatitis C. First let me say I applaud every one of you for your courage and genuine interest in others who share this disease.  It has been very informative as well as comforting, to browse this forum and hear other’s first hand experiences with Hepatitis.

I’m a 57 y.o. male with Hep C 1a and have been infected since probably 1973. Symptoms drove me to the VA hospital here in my town and after a couple months of tests I finally know the cause of many difficult medical issues I’ve had for, really, some 25 or 30 years.

According to my tests, my liver function is still near normal and I have a viral load of 349,900. The Dr I’m seeing at the VA hospital is not a Hepatologist but an Infectious Disease specialist. He advises me that due to my low viral load and near normal liver function, I should or can, take the “wait and see” approach. I’m still not sure of all the trials going on or what promise any of them might have but am looking into it.  I’ve read that as some gets older, their chances of SVR go down and am feeling that I should jump on Tx soon. However, the potential for serious, irreversible Sx sort of scares me. I don’t mind biting the bullet and going for Tx (with it’s typical unpleasant Sx) for 48 or even 72 weeks, but seems (from what I’ve read) there are some serious risks involved.

Any thoughts out there that may help me with my decision making or that may be informative? Should I go for it?

Thanks ,  Do Music

[Mister beagle bailey]

Welcome to the forum.  I.m a 59 yr old male, geno 2B, starting viral load 318,000.  I decided to treat for 24 weeks and was UND till 2 months post tx.  It has been 6 months now since I finished tx and I'm going to wait till something kinda comes down the pike, it's only a matter od time.  This is a decision only you can make and I wish you luck with what ever you decide.  I won't kid you, it's a ride of a life time and hell at times but you could be one of the lucky one's a get to SVR.

Let us know what you decide.

Marry Christmas

Beagle

[jmjm530]

As a genotype 1, personally I'd get a biopsy and hold off on treatment for now unless I had significant liver damage. Newer drugs are now in trial and we will have much more definitive data on them within the year. 52 weeks (or 72 weeks) out of your life is a lot more than you think at your age (and don't forget to add another six months to a year to fully recover post treatment)--  at least that is what my experience has been. I started treating at age 58. So don't not look at treatment lightly or with any sense of machismo. I started macho man and ended up almost a totally broken man. Just started gettting back to sort of normal six months after treating for 54 weeks.

All the best,

-- Jim

[domusic]

Thank you  for your views. It is a tough decision. I have a follow up visit with my Dr in Feb. 07 and should have made a decision by then. By the way, I haven't had a Bx, the Dr said it really isn't necessary right now. I did have an ultra sound and the report there was no visible mass, no visible fibrosis, no cirrhosis, only a simple cyst on rt. lobe.

I may wait 6 or so months to see the results of a couple trials, namely the VX 950 trials (if I remember the name correctly).

They say (and I'm sure you'll all agree) that time seems to speed up the older you get. Much to all of our dismay, but I do hope that's the case when and if I Tx.

Thanks to all, and have a wonderful holiday season.

Do Music

[Kalio1]

Regarding "new treatments" that are being developed, please bear in mind those treatments will be taken WITH the current drugs available now. They will not be a whole new avenue of drugs where you will be able to avoid the current medications, they will be in addition to the current treatment.

[GrandmaA]

It's a difficult decision but you feel better after you make up your mind. A biopsy should show what's really going on. If you are stage 1 or 2 you can wait. if you are 3 or more treat now. It took me 4 years to make the decision myself. I decided I didn't want liver cancer and at 64 I do want to live another 20 years or more. My genotype is 1a. I'm in the 13th week of 48 now. Best wishes to you, and Happy holidays.

[Myown]

hi and welcome ot the forum.

i would suggest that you get a fibrosure test prior to getting biopsy. Simple blood test. It is considered acurate only at low or high levels. For instance mine showed 0 damage grade 1 inflamation (inflammation), yet my viral load is 10 million, my liver enzymes are presently in normal range and have only been slightly elevated before that.

Being my fibrosure blood test came back in the low range, it is considered accurate,,,or if it came back in high range indicative of scarring, that would have been considered accurate.Any score that falls in between the high and low range is not considered reliable by doctors. A leading hepatologist told me no need to get bx because i am in low range and in my case the fibrosure would be accurate.

Fibrosure test is just something you may want to consider before getting bx. I am getting lazy these days for some reason and I didn't read through all the posts in entirety so forgive me if I am repeating something that may have already been told to you.

I'm a 2b, so I deceided to treat and hopefully my decision was a correct choice for me. Wishing you the best!

[Kalio1]

My doc dislikes the fibrosure and says it is very inaccurate. I have read other doctors say the same thing. If possible, it is best to get a real measure of damage and that is a biopsy.

[chcnme]

Hi Do Music.  Welcome.  Glad to see you now participating.  Great forum.  

On the newer drugs - if you are banking on holding out to treat with these AFTER they are marketed for use, do be aware that ... well - that could be 3 - 4 years down the road.  BUT - you can (possibly) treat with some of these newer drugs AND the standard of care with it by "trials".

I think there are many benefits for some to do the trial thing, but they aren't for everyone.  Depends on what you like, what you're willing to risk, etc.  And there is also exclusion criteria that might prevent you from being enrolled.  If you are intersted in the newer drugs, I would recommend you get under the care of hepatologist / GI doc doing research (usually at your major medical centers).  Get your ID doc to refer you or your general doc, or .. can the doc at your VA center make a recommendation?

You're 57, you have apparently lived with this virus pretty good for 33 years.  That's a good sign.  I'm 47, female, 1a, have been infected 32 years.   I'm in the WW (watch&wait) and under the care of a very good liver doc.   I treated with standard in Oct 2003 and lasted three weeks BUT - I had an underlying peridontal infection at that time that HAD to be treated before I could continue on with Hep C treatment, so they pulled me.  It took about a month to get it treated, and - I didn't opt to get back on Hep C treatment when they said I could (after the infection had been treated) because Hep C tx was a major pain in my a** at that time and had made me pretty darn sick, BUT (again) I was sick going into treatment.  (had low counts - low wbcs, low rbcs, low platelets when they started me).  But I recovered just fine, and have been fine since, with the exception of fatigue and just the usual **** that goes with Hep C after 30 years.

On biopsy three and a half years ago I was grade 3 / stage 2, viral load 400,000 (very low), enzymes at that time were slightly up  (first time elevated ever; they have returned to normal since and have stayed normal since Jan 2004).  Platelets in 2003 were down (not real bad but bad enough I had big bruises, but OK enough to have a liver biopsy). wbcs rbcs were also down then  (they have all been fine since.)  In other words, my labs now, every three months since, have done fine - they are all within normal limits.  That is good - that is what a doc who has you in WW wants to see.  That's what you want to see, too.  So feel good about your good labs!

In Sept 2005, I wanted to go to Duke Liver Clinic (considered one of the top in the U.S. for the management and treatment of Hep C and in research, too.) It's almost a 3 hr drive, but it's been worth every mile.  The "newer drugs" had begun making an appearance  (VX-950, SCH503034, some others - called protease / polymerase inhibitors, by Schering Plough, Vertex, Roche, Wyeth Viropharma -- bunches of them were announcing "starting trials".)   Since I was interested in them, and since I was also doing a WW, my doc at Duke has been a God send and has been very thorough when I go and has made sure my liver, according to everything they know about Hep C, is looking OK for me TO wait.  I go every three months, he does a physical exam, looks at my palms, my extremities, belly, checks my liver for enlargement or palapable edge, gets all the necessary labs, and he has been watching my liver like this for over a year for signs of "not doing OK anymore",  at which time he would recommend not waiting any longer for new drugs or a trial and would recommend standard of care  (48 wks of PegINF and Ribavirin - same stuff I had the first time.)

He has told me time and again that my liver is doing fine; that I'm in good shape with respect to the Hep C and NO progression.  I began feely "iffy" about this and began questioning him because I had concerns that it was NOT doing fine, or that my age or duration of my disease might become a "problem", and that I might need to "rush on into treatment with standard" just because of everything I had heard, and he has assured me again that I'm fine - that my liver is FINE (he emphasizes that because he knows I'm getting scared because of.... well, the obvious - have Hep C / don't want it to take me down, don't want to get too old for treatment to work.) Granted, it's good to wonder and to question, but if a good liver doctor is following you in WW and has told you that you are doing OK, do take comfort in that, especially if your labs are OK. Feeling crappy with Hep C is not unusual at all, but feeling crappy is not necessarily a tale tell sign that you need treatment.  Everything, including your health status in other areas, needs to be weighed in there too when considering treatment, including your age - just all of it.  

Anyhow..I wasn't able to get in the VX950 trials because I had had two weeks of prior treatment.  There is another one that is starting enrollment now  (probably in your area, too) in Phase II, called HCV-796 (with Peg and Rib).  My doc says it is looking good.  It's for treatment naive (never had treatment), for those who have had some treatment and didn't respond or had to be pulled, and it's for nonresponders, too (had treatment/ didn't work.)  He has offered me the chance to get in this trial because it IS a trial I can get in having had two weeks, and because it's a polymerase inhibitors that will hopefully knock the snot outta the virus in the first month.  I don't relish this idea of treatment, but - I also don't relish the idea of waiting waiting waiting (although he has told me I am FINE to keep waiting.)

ID docs are good docs.  Great docs.  But I still think you need to be under the care of great hepatologist.  Do you have a liver doc you can see at your VA center or who can refer you to a hep / GI doc at a center doing research.  There is a great VA center in Durham NC - right beside Duke.  I know a lot of guys who are going there for their Hep C, some are treating; some aren't.

Sorry this was so long - I have a tendency to have diarrhea of the  mouth when I do start talking :)

Here is the link on HCV 796 on clinical trials dot gov.  It gives you some info but - you really need to be under the care of a doc doing research who can give you more info on it (if you want more info).  

http://www.clinicaltrials.gov/ct/show/NCT00367887?order=1

Best of luck in whatever you decide. Happy Holidays, Merry CHristmas, Happy New Year.  Thank you for serving our country.

[Moniker]

I'm a 57-year-old male. I was genotype 1a. I finished 48 weeks tx about six months ago, and I'm SVR now. I also go to a VA hospital.

My biopsy before treatment showed that I had stage 2, grade 3. My doctor strongly suggested that I treat because the hep was progressing. By comparing my biopsy with the biopsy I'd taken a few years ago, the doctor could see that the hep progressing. I've had four or five biopsies over the years - I've lost count.

It's a good idea to have a biopsy every few years while you wait to treat. That way you can judge if it's progressing.

What symptoms do you have? I had almost no symptoms from hep c - just fatigue.

What sort of music do you do?

Bob

[jmjm530]

Do: hey say (and I'm sure you'll all agree) that time seems to speed up the older you get.
----------------------------------------
In all due respect to your doctor, as you state, he/she is not a liver specialist (hepatologist) and from the recommendation not to get a biopsy I question how current they are on treatment protocols. Bottom line is that you can't rule out significant liver damage from ultrasounds. My suggestion is to find a liver specialist and discuss having a biopsy before making any decisions.

Waiting 6-12 months for the VX-950 numbers to roll in is very reasonable but again, try and get that biopsy in the meanwhile.

----------
Yes, time does speed up as you get older which was my previous point. Kind of like "dog" years because you have fewer years less so each year is a greater percentage of your lifespan moving forward. I think 'missing' two years out of my thirties or forties would have had less of an impact -- at least for me -- than losing it in the late 50's.

All the best,

-- Jim

[bobbyullc]

good question,

many people mention that to treat younger means a slightly higher
SVR RATE, 1 or 2%. WHAT THAT LEAVES OUT IS TWO THINGS.
first to wait 1 or 2 years to see how vx950 is working out does not make you very much older at tx time and second that the svr rate will go up drastically if you can wait for the vx950 and it works as it looks like it is.
tx now is 45% svr rate and if vx950 works it could be 95% with only 4 weeks of tx or maybe a little longer. as i've said, i waited 9 years and svr went from 10% to 45%. i will wait if my pcr comes back positive next week.

[friole]

"after a couple months of tests I finally know the cause of many difficult medical issues I’ve had for, really, some 25 or 30 years. "

Me thinks you need a biopsy.  Liver enzymes alone do not tell you the status of your liver and you say you are symptomatic (what are those symptoms?).  The VA seems to be reluctant to reach out and order tests.  If they won't biopsy you, if you have other insurance, perhaps you can get it done thru that.  

I am a 1a and treated while I was 57-58 years old and relapsed.  I had little liver damage (according to the biopsy) but that does not mean I am against treatment.  If wishes were fishes.... I wish I treated in my 40's.  I wish I treated for 72 weeks. I may treat again after a consult with a speciality.

Those many medical issues are not going to go away if they are related to hep C and you don't treat. Please pursue this further and get that biopsy.
frijole

[HCA]

I endorse the previous comments-biopsy required!!!!!!!!!
Ultarasound useful for spotting tumour and certain features of cirrhosis but tells nothing about fibrosis progression.
Biopsy first,then make your decision,and yes it does speed up at your (and my) time of life.

[Kalio1]

It sounds like you have had a lot of symptoms in your post. I would not wait to treat. I had a lot of symptoms too prior to treating and treatment helped so much to regain my health. It is not easy to treat, but it is a FAR better choice to feeling lousy and fatigued all the time and far better than dealing with an ailing liver. Treatment IS temporary and even if you don't manage to eradicate the virus, you can suppress it and give your liver a break and time to heal. Just because your liver is still working doesn't mean it isn't under stress and causing you all these symptoms, it can continue to decline and cause more and more problems. I didn't have a biopsy prior to treating, but I would recommend getting one if you can.
The ultrasound or CT scan can not "see" the damage until it is quite advanced, the bet tool to verify liver damage is a biopsy.

People who suggest you wait at age 65 are not taking into account that at some point you might be told you are "too old" to attempt treating and then your window of opportunity will be lost. If you can, I'd treat this right away, at least give it a try and see if it will help you feel better.
One you have symptoms, that is a sign that things are headed downhill.

[Kalio1]

Sorry I got your age wrong! I'd still say give treatment a try even at your young age.

[bobbyullc]

the new drugs will for a while at least be WITH the old drugs BUT with a lot HIGHER svr rate and a much shorter tx time.
repeat after me....bx bx bx bx bx.
merry CHRISTMAS.
BOBBY

[hep62pj]

A biopsy is necesary, get one before you decide to treat

[Pdilly]

Nice to meet you.   Like several have voiced do get a biopsy.  They really for most of us are quite painless.  Take a good book as laying there for 3-4 hours gets boring.  Like some of the others once you have your report back you will know if you have to treat now or can wait for a year or two when the new better treatments will be out there.

[domusic]

With such a large response I am a bit overwhelmed. There is certainly a lot to consider and I'm trying to do my research before making the decision. Your comments are most appreciated.

Actually I have two doctors on my case, a ID and a GI. The GI is head of the hepatitis team at the VA Hospital here (a major VA medical center and one of two VA hospitals in my town), they are fully integrated with University Hospitals and the Cleveland Clinic, both very renowned hospitals. From what I've heard the VA here are leaders in the treatment and research field concerning Hepatitis and do occasionally have clinical trials going on with different pharmaceutical companies. None going on currently though.

As for the Bx, they said it would be preferred but not necessary, especially if I decide to Tx regardless of the results. Which is probably the route I'll take. No time like the present as they say.

Symptoms in the past. Mostly fatigue off and on for quite some time and worse in the last 2 or 3 years. I also have recently had  what I thought were Flu symptoms, major chills and uncontrollable shakes followed by being very hot and sweating profusely. Usually the next day I feel normal again. Not sure what that is all about or if it's related to my Hep, any thoughts on that anyone?

What kind of music do I "do". All kinds . . . If it has strings, I do it and have for 45 years. Actually it's is my profession and has been since 74.

Yes I am proud to have served my country. Fact I still do as I am the founder and president of a very large national veteran's organization.

Thanks for all of your comments.

- DoMusic -

[Kalio1]

Thank you so muc for your service and also the work you do with Veterans now. I am also glad to hear you are in good medical hands and will get excellent treatment. You might find those symptoms improve after treating and you will feel better in many ways. Lots of people stop by here saying how great they feel when they clear the virus.
I had the chills and sweats thing too, I was told it is related to having Hep C. Mine would come and go for no apparent reason. That went away in the first month of treatment.
Keep in touch and let us know how it's going. I hope you and your loved ones have a peaceful Holiday, glad you found the forum and joined us.

[bobbyullc]

even if i had decided to tx no matter i think i would still bx just to know how bad,or good, my liver is???? if your sides are bad the tx cannot be much worse. the bx may show if your problems are from hepc or maybe something else? luck.

[ladybug52]

Glad you joined the forum. I join the others in saying get a biopsy. How can you make an informed decision without all the critical info? Knowing the degree of damage will enable you to know how seriously you need to attack the disease. I think info is empowering and helps us become a partner in our care, not a passive receipient.
I was in the A.F from 74-78. I've often wondered if I got this from the long lines of immunizations with the shot "gun".
I am a geno 2 BTW, my biopsy was stage 1 grade 2 inflamation (inflammation). Good luck, keep us posted.
Bug

[domusic]

Thanks for your comments. You're right, the information gained from a Bx would probably be of great value knowing where I stand. The head of the Hepatitis team at the VA does recommend getting one but they let you make the final decision. It won't change the outcome of Tx. The tests they have done don't reveal any liver impairment whatsoever so he said it's my call.

I've also read the stories of the Jet Gun inoculations the military used to do. I even mentioned it at a group consultation for Hep C at the VA and their reply was "we've heard that also but that is something you'll have to investigate on your own". Sort of tells me that the VA is keeping closed mouthed on the subject. I guess they don't want to exposed themselves to disability claims against the military.

Take care Ladybug52,

Domusic