Treatment or not

[tn37214]

I am trying to decide whether or not to start treatment. So far I have fibrosis. My GI recommends the 1-year treatment regimen. To me, the treatment with its side effects sounds awful. I've had this disease since the 70's and found out when the Red Cross notified me of antibodies in my blood. That was in '97. Didn't do anything about it, out of stupidity. Now I just wonder what might happen-best case/worst case, if I don't do treatment. I'm 61 yrs old and just don't want to take a year of being miserable when I might not have that many years left. Any input will be appreciated.

[IAmTheWalrus]

My own experiences make me a little fearful that rapid progression of disease could send you over the edge into stage 4 where treatment is more difficult and success less probable. I don't really have any data on the progression time between stage 3 and stage 4, or even know if an average is meaningful, since it seems to vary so much between extremes for individual patients. Maybe a knowledgable hepatologist would be of help here with application to your specific case.

I think if it were me I would probably treat now. If TX is not successful it may at least buy you some time without disease progression that could make the difference in being able to treat later with the better drugs that are under study now and will become available in a few years.

Good luck to you.

[newleaf09]

I always had normal liver panel.  That's what's so frightening about the disease; that it can be there hurting you for a long time with no hint.

Hair loss IS the least of your worries, but most get at least some.  Usually it's only noticeable to you but people on high dose treatment can lose a whole lot of hair.  It grows back after you finish the treatment.

Do the biopsy to get a picture of liver damage.  If you are still in early stages of fibrosis (scarring) you may want to wait just a couple years for some new treatment drugs that, while they add a few more side effects, may be able to shorten your treatment period, putting you at risk of side effects for a shorter time.

Glad you are seeing a hepatologist.  With your current other health issues, you will need very careful monitoring.  If you are like most of us, we've slept poorly for years.  I can't wait to see if that goes away after I finish treatment.  Good luck.

[hilltn]

I'm in the process of getting my referral to a hepatologist. I'll feel a lot better once I've seen him or her. What I don't really understand is why my liver function has always been fine. It was checked at every 3-month check of my diabetes, when I visited my PC's office. That's another thing, What I've been reading mentions that treatment could cause diabetes. I already have diabetes, depression (actually bipolar but highs are controlled now), and insomnia. It worries me a lot that these could worsen. Also--does everyone have hair loss? And if you have had it, how long did it last? I know that should be the least of my worries.
Thx ahead for any input.
tn37214

[franke566]

That was where I went wrong.  I was F1 and felt great so told to come back in a yea r and when I went back still feeling wonderful I was off the charts F4 for fibrosis and my viral load was also off the charts.  I did nothing different in the year.  The only thing keeping me alive now is my ducts are not occluded, franke566

[Fmulder]

Im in a similar situation, I choose not to treat now, Better treatments with better results and shorter treatment time's are around the corner, It really depends on your biopsy results, Iv'e been a 1 (fibrosis) for 33 years,  If I was a 3 or a 4 I probably would have treated, It really depends on your numbers?  

[franke566]

thanks for keeping it real!  the doctors told me many things were in my head and my shrink said well your head is what controls most of your body, mind etc. except for a few sympathetic nerves but even those can only be registered consciously in the brain deciphered and transmitted to the owiee.  He said Interferon changes and re-arranges neurons, blocks dopamine and the bodies other natural highs that most of us were born with,  Children are so trippy cause they live on the pleasure pain principal-are we post Txs any different?  We feel (those of us who do) pain and we want the pain to go away.  All we are looking for are answers-not trying to whine or frighten someone.  My questions might help someone in the future.  Your feedback might give me the right question to ask and maybe interest some university like Baylor in Texas to seek an answer for post tx patients who are having sides 4 years after Tx and literally dying from them .

[jmjm530]

In the forums, we sometimes whine like children about the side effects because we know we have a sympathetic ear hereAt times treatment ***** but it's like having a small child: just when you don't think you can stand his behavior one second longer, something changes and things aren't so bad.  Go for it.
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If that's your personal experience fine, but for many of us the "change(s" you talk about are quite bad and then get worse. And the reason we "whine" here is not because there's a sympathetic ear but because many of us are in real pain from tx. Not trying to be negative but trying to keep it real.

[Trinity4]

Liver cancer is a concern when cirrhosis begins but the percentages of risk for liver cancer are much lower compared to the percentages of not acheiving SVR once the liver has reached stage 4.

[newleaf09]

I agree with most of the others that your proximity to cirrhosis (stage 4) should guide your decision, not the possible misery of treatment.  If you move on into stage 4, you will be at risk of being killed by liver cancer and even after you treat and your liver begins to repair itself, you will STILL be at risk of liver cancer.  Don't go there.  Treat before stage 4.

In the forums, we sometimes whine like children about the side effects because we know we have a sympathetic ear here.  At times treatment ***** but it's like having a small child: just when you don't think you can stand his behavior one second longer, something changes and things aren't so bad.  Go for it.

[tn37214]

You guys are amazing. Thanks so much for all the info. I will check into finding a hepatologist, and I'LL BE BACK.

[Keith_2008]

I would look at the situation like this. Only about 40% of the people who treat with the SOC ( Standard of Care) treatment have success. That means for every ten people in treatment six people fail to reach SVR. That is a pretty poor disposition in my book especially when you combine how difficult the treatment is and the length of time required for the treatment.

On the other hand if you can wait another year or two there are a couple of new drugs coming out that will bump up the success rate to about 74%. These are the Boceprevir or Teleprevir drugs. That means that 3 out of 4 people will have successful SVR and possibly a shorter treatment time. To me the answer is simple. My doctor indicates this will become the new SOC treatment. It's just waiting for FDA approval.

One other alternative is to get into a study trial. That would get you going right away but does not necessarily guaranty you any better results that the SOC treatment due to the fact that these are blind studies and you do not always get the experimental drugs. Instead you get the placebo. This is what happened to me just recently.

[jmjm530]

Ditto on seeing a hepatologist. They are better able not only to evaluate you, but if you decide to treat they have better track records for success. That's because they are more on top of the newer studies and protocols and are more apt to keep you on a full dose of medications by using helper drugs. At age 61 with stage 3 you will want the absolute best doctor quarterbacking your case. In all probablity this will not be a gastroenteroloigst , it will be a hepatologist. Give yourself the best chance. As stated, hepatologists can generally be found in your larger teaching hospitals. If you see one, make sure you bring with you the actual original biopsy slide set, not just the biopsy report. Along, of course, with your entire chart including blood tests and procedure reports.

-- Jim

[apache1]

===========================================================
"I looked up what I could and inflammation seems to be "very low'. 1-4
Stage 3 fibrosis--3 out of 4-bridging."
===========================================================
Fibrosis stage 3 is considered advanced fibrosis. Inflammation grade 3 is not low.
Are you beginning stage 3 or almost stage 4 ?

You mention your Gastro. I assume that is your treating DR. The world of HCV treatment is advancing very rapidly. imo, Most Gastro's are behind the hcv curve.
A good evaluation by a Hepatologist is in order to figure out how much time you have before permanent or collateral damage might occur...
You can find a Hepatologist at most teaching hospitals. Couldn't hurt to get a 2nd expert opinion.

A Hepatologist will probably want you to do new blood work and a biopsy(if you haven't had one recently) to verify liver condition. This is a good idea for you. It will help tell you if you need to treat now or you can wait for the new drugs in the pipeline.

The new PI drugs, due maybe sometime in 2010,2011, promise shorter duration treatment and much higher success rate. Its feasible one could start soc this summer and before they finished 48 wks tx, the new PI drugs are available.

IMO, (just another fellow hepper laymen) if you can wait without much risk, confirmed by your Hepatologist, this would be the best route for a geno1 on 5/12/2009.

Again, you need to discuss this with a Hepatologist, familiar with the new drugs, soc tx, and most importantly your exact current liver/health condition.

apache

[R Glass]

Ditto on what Trin. said
I am generally from the wait to treat camp but at stage3/grade3 & 61yo, I would treat.

[Trinity4]

The next step is cirrhosis.  Will you advance quickly?  No one knows but because of your age you may.  I would definitely talk with a liver specialist unless your GI has treated hundreds with hepc and you feel he is knowledgeable enough to advise you.

Can you wait for newer and better drugs coming down the pike?  Perhaps, but there is no certainly when these drugs will be available (2 - 3 years?) or if indeed the treatment duration will be shorter.  Interferon and ribavirin will still be a part of the triple therapy so the exposure to these drugs is unavoidable.

Many people experience depression before and during treatment.  You should make your specialist aware of any existing medical problems such as depression prior to treatment.  There are antidepressants available to help.  

Here are a couple of very good websites which will give you much information on hepc and treatment.

janis7hepc.com
hcvadvocate.org

Here is a very informative video too.

http://www.uctv.tv/search-details.aspx?showID=16056&subject=health

BTW, if it were me I would treat.

Good Luck
Trinity

[jdwithhcv]

I was stage 3/grade 3 when diagnosed.  My doctor said "treat now, you don't have time to wait" so I did.  It was rough but well worth it.  Now I get to keep my liver and that feeling of impending doom is gone.  What a relief!

Good luck, whatever you decide.

jd

[tn37214]

Thx for your reply. I called my GI and got the data. Stage 3 fibrosis, Stage 3 inflammation, 2,210,000 viral load????
I looked up what I could and inflammation seems to be "very low'. 1-4
Stage 3 fibrosis--3 out of 4-bridging. Does that mean different areas of fibrosis connecting? Help!  I really haven't taken this all in yet--mentally-but will need to make a decision soon. I'm worried about the depression as a side effect since I already struggle with that, and insomnia.You guys are great on here, it always helps to talk to people who have been thru it before you.

[Trinity4]

Did you have a liver biopsy and what stage are you?  By all indications, the older we get the more rapidly fibrosis advances.  I am 57 years old and in my 59th week of treatment.
I've worked the entire time.  I have late stage 3 liver disease so waiting for newer drugs or treating at a later date wasn't an option for me.  
They are many things to consider before taking the plunge.  The best thing to do is consult with a hepatologist, have the necessary tests and decide what the best course of action for you will be.  There are no guarantees with treatment that you will be cured but if you have advanced liver disease you may find it will be well worth it if you SVR.

Personally, I would have attempted treatment before I reached this stage of liver disease had I known I had hepc.  

Trinity

[tn37214]

Thx for responding. I'm really torn on this one. Seems like if it's only gotten this far in all these years, maybe I could make it w/o tx. Hope to get a lot of info from here. Seems like a friendly bunch :-)
s

[portann]

Oh my gosh, this is an amazing topic and there are enough opinions here that will catapult you into some really hard and eventually clear thinking.

I'm running late but want to say that I'm almost your age, have similar dates (had it since 1969 and diagnosed in 1995) and finished 48 weeks of treatment fifteen days ago.

Was it miserable? Well, I made friends here and so it wasn't that miserable. :) I was able to keep going until the end and stick with it.

TTYL