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1750760 tn?1411486076

Stage 4 - To treat or not to treat - that is the question

Well hello all. I've only spent a brief time around here but have been moved by so many of your stories. Thank you all for sharing - (I do not say that lightly, as I've known I've had this for 10 years and have only just told a member of my family last week...)

I have stage 4 liver damage. A growth was discovered recently which a biopsy determined was benign, but also confirmed liver damage. Probably have had this for 25 or 30 years. I am supposed to go on treatment in about 6 weeks or so. I will have just  turned 59.

It will be pegasys, ribavarin and telaprevir. I was offered the chance to be in a trial for another new drug, but it sounded like the odds were better with the telaprevir.

I've known about treatment for a number years but the side effects did scare me enough to not try. But it now sounds like the only real option to doing nothing. I am feeling scared, but resigned to giving this a try.

However, after spending the last hour reading about all the side effects during treatment and then hearing so many say that they never go away and they are not the same person they were before treatment, I am wondering if it is better to not do the treatment, even knowing the likely ultimate outcome of that decision. At least I would still be "me" when I finally go.

Maybe I need to keep reading around here. Maybe the treatment can work without permanent side effects - I wish I had found some stories like that. Are there any ?

In the end, only I can make this decision, but I value your opinions and hope you will share them with me. I look forward to hearing from some of you - please.

Thank you in advance and take care all
Best regards,
Brian

28 Responses
220090 tn?1379170787
Brian,

I am certainly one of the people that complains of permanent side effects.  In no way do those side effects make me regret treating.  On balance, I am enjoying life much more than I did when I had no energy and constantly lived with the threat of end stage liver disease or cancer.

Fibrosis progression is not linear; the older you are, the faster it progresses, so you might not have as much time as you think.

Many people have few symptoms while treating and no permanent symptoms.  So get your doctor's opinion and it the opinion is to treat, I hope you take the advice.

Life is a wonderful experience, so don't even think that death is preferable to interferon side effects.
Best of luck to you,
Eric
317787 tn?1473362051
Hello I complain as well but I would choose life over death any day of the week.
I treated in 2008 with a trial of SOC plus a protease inhibitor Roche R 1626 (while working for govt) and while it was not "fun";   I did get through it.  It took about a year for me to get my strength back.  I continued to work.
I am now going to treat with the telaprevir and SOC.  Everyone is different, everyone has different side effects.  One thing that Hector has taught me is that once you hit decompensated cirrhosis Hep C looks benign.  If you can treat you should.  There are no guarantees in life however this virus does kill and the two new DAA's have doubled our chance of killing the virus..  I am a 2/4 and feel the new drug will work for me.  I was UND between 6 to 8 weeks the last time though I relapsed 6 weeks after stopping the trial.  As many people here say, the people who are doing well are not posting here, well a few very kind souls are still around to help the rest of us.  I hope to be able to do the same, get to UND, then SVR and hang with Andiamo, Hector, Ev, NYGirl7, Mikeismom, and many more I can not remember at 4 AM, sorry to the great people I have left out, there are so many who are SVR yet come back day after day to lend their expertise to help the rest of us,  God Bless you all
D
317787 tn?1473362051
p.s. I plan on starting tx in about a month.  You could read about Andiamo and NyGirl -NYGirl 7 and other people journey through tx and over to SVR.  Their story would help you.  The new drug doubles the chance for Geno 1's, even stage 4's
I wish you a lot of luck and now that you will receive support and advice here, it is a great support group of people
Dee
446474 tn?1446351282
Hi Brian,

"The side effects did scare me enough to not try. But it now sounds like the only real option to doing nothing."

Please educate yourself about hepatitis C treatment and End Stage Liver Disease (ESLD) before making any decisions as the information in your post has little to due with the reality of either. I don't mean to be harsh but you don't seem to have a realistic idea about hepatitis C treatment or what will happen as your cirrhosis advances. To "do nothing" while you still have options is like saying I don't really care if I die, because I don't want to risk suffering. I will try to convey the suffering that myself and my friends have experienced when you develop advanced cirrhosis and compare that to treatment which I also tried but failed.

As far as treatment, most people who treat do NOT have permanent side affects. Because you have heard of people who have continuing side effect after treatment doesn't mean it is the majority of people that have treated. It is a small minority that have chronic symptoms after treatment.
Many people on this forum have dealt with the side effects during multiple treatments until they cleared the virus. Others are still trying. They aren't throwing in the towel. They haven't given up. Why do you think you can't handle treatment when most others can?

"At least I would still be "me" when I finally go." I hate to break the news but you will NOT be you if you are the average 59 year old. I am also 59. Besides being unable to work any longer and not having the energy to do the simplest things that people take for granted..Do you know that in time you will lose all your muscle mass. You will look like a concentrate camp survivor. Skin and bones.The only difference is your skin will be yellow/orange with bruising due to bleeding under the skin and your abdomen will be bloated like you are having twins. Need to have your abdomen drained on a scheduled basis. You may vomit blood. You may contract many infections which you will have to be hospitalized to control. You will be incapable of taking care of yourself. Your kidneys may stop working so your urine can start to poison you. You may need a kidney transplant if your liver disease causes your kidneys to shut down. You will be hospitalized many times due to life threatening complications of End Stage Liver Disease (ESLD). You will go out of your mind and not recognize your own family, what year it is or where you are. You will go in and out of comas. You will be prone to liver cancer the longer you have cirrhosis the higher the chances of developing cancer. All I can say about liver cancer is that I now have liver cancer if I had hard a chance to treat my hepatitis C and not be in this situation I would do anything to avoid ESLD and liver cancer. If you are very lucky after experiencing these symptoms you will qualify for a liver transplant. You will undergo a major operation can take 8, 10 or more hours. You will have to learn to walk again and if you have no complications take about 40 pills a day and slowly wean them down to 1 or 2 meds that you will have to take on schedule for the rest of your life to protect your body from rejecting the donor liver. This is only some of the things that will and can happen if you should advance to ESLD. In a word - liver failure is not a pretty way to die.
Oh did I mention that you will still need to treat your hepatitis C after transplant? As 10-30% of patients with hepatitis C will develop cirrhosis in the donor liver within 5 years.

It is your choice in the end. Only you can decide what is right for you. I can tell you that myself and a number of my friends would love to be in your position. To throw it all away because of the possibility of temporary feeling ill for 48 weeks...

I hope you are not offended or put off by the pros and cons as I see them. I guess I am jealous of someone who still has the option to stop their liver disease progression while I have run out of most of my options. Sorry, I am a human being and I am trying to be honest with you in hope of making you at least think about the privileged position you are in. The opportunity to save yourself from horrible suffering and possible death if you really do nothing until the end.
Hector
Avatar universal
Thank you Hector.  This was a heartfelt and important post.  I, at least, will not forget it.  I have often said and truly believe what I have heard in the past from a doc; that anxiety and fear is the HepC patient's worst enemy.  You have re-directed the fear to where it ought to be placed.
1669790 tn?1333666195
You've received some wonderful advice from some very knowledgable forum members.  These responses are very moving and should be taken to heart.

As already mentioned, most undergoing trt have some side effects, but some very minimal.  Those that have minimal sides don't often come hear to report that, so if your reading the posts thinking that the majority are experiencing the serious sides, you would be incorrect.  Besides being a great resource for information, this is a support forum for those having a difficult time through trt.   It's only natural for those having problems to share that information and ask questions, and sometimes simply get the emotional support to help them through a rough day.  That itself can be very helpful.  

I'd encourage you to thoroughly research this while you still have the opportunity to trt and extend your life.   Discuss with a good GI or Hepatologist to allow you to make an informed decision.  Best wishes to you in your choice.
Avatar universal
It would be wrong to give the impression that treatment is a cakewalk.  The other side of the coin is people coming in here who were inadequately prepared by their doctors/treatment team and thinking they'll have very little side effects and haven't adequately prepared for the impact on their life and then get blindsided by what they end up dealing with whereas those who have their eyes open more do much better.  I'd prefer to say you WILL have side effects and they can range from mild to debilitating however out of the years I've been participating in this forum, the great majority of people make it all the way through treatment and it's the much smaller number of people who have to stop treatment due to adverse effects.  I would say that applies to those who are left with serious permanent issues from treatment as well.

That's GREAT that you have the option to do Telaprevir.  As a treatment naive, you have a potential success rate in the high 70's.  There are many people here who have gone before you and will lend their support as you get through treatment.  There are monitors that doctors are aware of to look for as you go through treatment that will indicate that there are issues of concern - they'll watch your blood counts and track your side effects.   This treatment is certainly not new so there are strategies docs and patients are aware of to deal with the side effects.  It is definitely a serious undertaking and not one to take lightly.  However, many many people have gone before you and you will have the benefit of those experiences to guide and help you through as well, as we did.

As someone put it recently, it's a risk vs. benefit analysis.  A number of people do make it all the way through their lives without dying from Hep C.  In your case though you are already at Stage 4 and almost out of the option to treat at all.  Your risk to not treating has increased considerably, as Hector has so poignantly illustrated. You can decide not to gamble on treatment but please be very very very aware what your risks are of not treating at Stage 4 while you still have the option to do so....and I wouldn't take too much longer to make up your mind.  Good luck with this.

Trish

Trish

179856 tn?1333550962
I agree with all the valuable advice above.

Try to remember what if you dont treat and next time that growth is not benign - I bet treating would have seemed like a walk in the park once you have to face that fear. I have had three friends die of end stage liver disease. It is not a pretty thing and believe me the complications of ESLD WAY surpasse any potential side effects. Plus there is the whole 'death' thing at the end.

Please continue to learn about this disease and what is has done to you - stage 4 does not just mean liver damage it means cirrhosis and once you get much farther than you are you will be looking at transplant rather than treatment most likely.  Yeah the side effects of treatment are nothing compared to that.

I tx'd for 72 weeks and am a namby pamby crybaby - I had every side under the sun. The folks on the forum helped me to deal with each that came and made my life tolerable. I've been cured for five years now.........it was worth it.
1477811 tn?1321390053
Brian,

It's a hard decision whether to treat or not, and the sides can be difficult. I finished tx two months ago.  I won't lie, I had a hard go of it. It's only been two months though since I stopped and I am back to normal! In fact, I'm on my way to being better than what used to be normal because I'm UND and hope to be SVR. I do not regret tx even though it was difficult. I feel I have a new lease on life and no longer have the heavy cloud of "hep C" over my head.
Avatar universal
Hello
Please treat.  I did a yr of interferon and Riba in 2005, relapsed after 3 months and started 2 yrs of interferon maintenance. I just turned 60 and haven't felt so good in a long time which seems strange given I am Stage 4 compensated .  Think the exercise program I started 3 months ago is helping. Anyway just have pretreatment lab and was finally going to start treatment Friday. I made it through 1st time while working FT and  caring for 90 yr old mom . Lost hair so got a wig. Got rash, used cortisone and 25 bandages a day so I wouldnt scratch lesions. Got Riba rage, went on Welbutrin. Became SOB on exertion a/c anemia so I slowed down. In other words it ain't a picnic in the park but hey parks are full of mosquitos and you bring out the Cutter. You can deal esp if you have a good medical team. Spoke with nurse yesterday about lab results and guess what?  I cleared the virus.  We are repeating just to make sure.  Maybe the 2 yrs on 90 mg of Interferon worked.  No one ever did a viral load to see.  I could have started Telaprivir and at 4 wks we would have assumed I responded to treatment and continued for 26 weeks.  The RN I would have worked with left and fortunately the new PA did a full battery of tests . I could have been on meds I didnt need.  Please anyone reading this and about to start treatment, get a viral load done 1st esp if you were on interferon maintenance and didnt get tested when you stopped.
I still have stage 4 liver disease but no longer have the virus attacking me.  My husband died waiting for a transplant.  He was on top of list but all 3 livers that became available were too fatty to use. He had not wasted away but his legs were huge and oozing water like crazy.  Wrapped in paper towels which had to be changed several times daily. He had encephalopathy and hated the treatment which is intended to give one diarrhea. No ascites or esophageal varices. The treatment was not anywhere near what my husband went through. Treatment is available, just do it.  Take it a day at a time.  Make sure you have a med team who will help with your symptoms.
Hope we both will see our 70th
1477908 tn?1349571310
It's normal to be anxious before starting treatment. I can't think of one person that hasn't had second thoughts about it, even those of us with cirrhosis. It's a huge leap into the unknown - how will we react and respond to treatment - and what will our lives be like once it's over.

Permanent side effects, yes, there's that chance but when you consider the very permanent side effect of NOT eating as a Stage 4, well, the decision is pretty well made for us whether we acknowledge it or not.

I did 72 weeks of high doses and reached SVR - I also have compensated cirrhosis. Post tx, yes, I've had issues - some such as the hypothyroid have been resolved, others still remain, but are diminishing - or maybe I'm adjusting to them, I don't know. But life is good, especially without that weight of liver failure at every turn.

The only other advice I can give is to not go into it resignedly (is that a word?). Hit it with a kick a$$ attitude and when you become UND, make a copy of the PCR results and hang it someplace where you can read it often - and remember that everyday hence is one less day your liver is being damaged. The healing starts today, HW. The choice is yours.

Pam
1477908 tn?1349571310
treating, not eating- Geez! Must be time for supper........
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