Do benefits outweigh side effects

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Friend in Need
New Member


Date Joined Dec 2007
Total Posts : 7
   Posted 12/3/2007 6:43 AM (GMT -7)   
I was diagnosed with Hep C in 2004. I feel pretty healthy, and have NO idea how I contracted it. It was confirmed by 2 sperate tests and by the Red Cross after i gave blood.
 
I have heard that the treatment can be debilitating. since i currently feel pretty good and have been told they see no scarring on my liver, I kind of feel that the side effects from the treatment would far outweigh the only 50% chnace that it would even work.
 
But just last week, my primary physician urged me to start it as the risk of contracting serious liver disease later in life was MUCH higher with no treatment.
 
Help!! can anyone share their thoughts or views on this. i am a 47 year old male with a 15 year old son and a wife.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/3/2007 7:05 AM (GMT -7)   
Hello Old tackle, Welcome to HealingWell, I can not tell you anything about the side affects of treatmeat as my husband who passed away from liver cancer due to Hep C and cirrohsis didn't get any treatment for it. I can however tell you about the horrendous journey he went on the last few years of his life. If there is a treatment that can give you even a 50% chance of not going through all the pain and suffering that my husband went through the last 3 years I think that I personally would go for it. But that's me. There are people on this forum who have been through the treatments and they can give you a better idea on whether it has been worth it to them or not. One thing I know is that if you don't get treatment the only other option to save your life will eventually have to be a liver transplant. And what I have read is that even with a liver transplant Hep C comes back and destroys the new liver. Good luck and Take care.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/3/2007 4:43 PM (GMT -7)   
Oldtackle, My husband was diagnosed with hep C in 1994. He is 43 and now has advanced cirrhosis. He took the treatment a couple times and would do it again if he had not lost his insurance. The treatment was successful in putting the hep C in remission, but he continued to drink and the hep C was back after 6 months. We are sure if he would have astained from alcohol he would be hep C free today. The treatment can be very dibiliating in some people. It was really hard on him, but he doesn't regret it at all. Some people have only minimal side effects. I think the main side effects my husband had was feeling like he had the flu and weak. He was also very moody and irrational at times. I believe risking the side effects from the treatment far outweigh what a person goes through with cirrhosis. It is a very unpredictable and scary disease. People with hep C also have a greater risk of liver cancer. I really agree with your doctor and also urge you to take the treatment. The alternative's have much greater risks. Although you may feel fine now, hep C is a silent killer. Most people don't even know they have liver disease until it is too late. If you could see what others with cirrhosis are going through now you would understand why it is so important to try to stop the hep C. Please read the other posts here. They are very informative.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/3/2007 11:27 PM (GMT -7)   

I can speak as one who has hep C, diagnosed in '93.  Your post sounds so much like my thinking at one time.  At first, I was willing to take the treatment, which at that time was interferon-A.  I ended up being taken off of it by my GI doc, after only 6 wks., as my white count plummeted too low.  Before doing that, he tried cutting injections to 2 a week instead of 3, and then reducing the amount of interferon I was taking, but neither worked.  I remained off treatment for a couple of months, and tried again.  This time, the same thing happened, but I took myself off of it after 3 wks., as my immune system was so compromised that I was catching colds from people at work.  I felt just as you do--that I really felt okay except for moderate fatigue, and after switching to P/T work and taking afternoon naps, I was functioning well.  So I just let things slide, except for having blood work every 6 mos. and a liver sonogram once a year.  With the last sonogram in 2005, it was discovered that I had a huge hepatoma (cancerous liver tumor) in the rt. lobe of my liver, which had metastasized to the inferior vena cava (an artery.)  I was being seen at a teaching hospital, as I had no insurance, and the doctors there could only say they were sorry...acted as though it was a death sentence...that a transplant was the only thing that might save me, and that would have to be done at their affilliate hospital downstate. 

Meanwhile, I was approved for SSD for other health problems.  It took them 2 yrs. to finally approve me, so I didn't have a waiting period for Medicare--got it immediately.  Mayo Clinic was fairly new to my city, and their transplant wait time was the shortest in the country.  I started going there, but found that I did not qualify for a transplant as my liver enzymes were not extremely high, and the tumor had metastasized.  BTW, liver cancer is not treated by standard chemotherapy, as it does not work.  After more scans and tests than I could keep count of, those wonderful docs at Mayo targeted the tumor, first with chemoembolization, and then with TheraSphere--a study drug, and I was only the 2nd person it was used on there.  Those treatments shrunk the tumor and the piece that had metastasized went back into the liver.  Therefore, I became eligible for surgery. 

On May 15th of this year, I had the entire right lobe of my liver removed, along with my gall bladder.  There was no viable tissue, so it will not regenerate.  However, the left lobe--a small part of the liver--has grown to the size of a rt. lobe and has taken on the work of the missing rt. lobe.  All went well, but 2 mos. after surgery, I developed a hiatal hernia...part of the stomach has pushed through the weakened abdominal wall, at the site of one of the incisions.  I have had to wait until I was fully recovered from the initial surgery before I could have hernia repair.  That is now scheduled for Dec. 14th.  I hope that will be the last of my problems for a while.  However, a biopsy was done of my left lobe during the cancer surgery, and I do have mild cirrhosis.  I have not had an alcoholic drink in 21 years.  I stopped smoking 5 years ago, and am eating "clean" food and doing everything I can to slow the progression of the cirrhosis.  It is possible that I will need a transplant down the road, but I certainly hope not.  I'm nearly 65, but am now willing to try treatment again.  I was told that what they now use does not cause low WBCs.  The "combo" also has a better success rate than the interferon alone did.  The old statistic was 50% success rate, but 25% of them relapsed.  I believe the relapse rate is much lower now.  But you must do your part to give your liver every chance:  No drinking at all, enough sleep and rest, healthful eating, etc. 

I have to get past the upcoming surgery and recovery from same, but after that I am more than willing to try treatment again!  Although I am now cancer free, I still have active hep C.

So please do get treatment.  Without it, you may die sooner than you should.  Untreated chronic active hepatitis C almost always causes liver cancer and/or cirrhosis.


Post Edited (hep93) : 12/4/2007 12:21:24 PM (GMT-7)


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 12/4/2007 4:56 AM (GMT -7)   
OldTackle

Welcome to the forum. I totally agree with all that have posted here that any chance of treatment would be worth the short term side effects and hassles. I don't have hep C, however I do have a autoimmune hep, and take several medications currently in attempt to control the progression of the disease. The long term consequences for liver disease seems to the same no matter the original diagnosis. Please seriously consider your doctors advise.

Lucy

tld
New Member


Date Joined Nov 2007
Total Posts : 10
   Posted 12/4/2007 7:24 AM (GMT -7)   
hi OldTackle,

i have had hep c most likely since the late 70's. in 9/2005 i rec'd a liver transplant. have done great but my levels have been high so i was referred to a clinical study where i take the injections once a wk (used to be 3) & oral med 2x pr day.
i do have the flu like symptons & i have been on this treatment 5-6 wks. i've been told the symptoms are different pr individual & had hoped i would not even notice i was taking it (not the case) ha! even so i can tell you with having the transplant (already given a 2nd chance) i strongly feel that odds (which some believe to now be as high as 60%) that it is definately, literally "worth a shot"
it is hard to make yourself do things that may not make you feel as well as you have but as w/ all things i believe it is a mindset & we can do so much more than we believe we are capable of!
bottom line i am still alive & enjoying my kids, grandkids, family & friends.....heck of alot better than my alternative was!
i feel when we are faced w/ situations we must give it our all because it is so worth it!
my prayers are w/ you!
tld

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 12/4/2007 8:43 AM (GMT -7)   
Dear Old Tackle,

The benfits outweight ths side effects if you clear! I did 2 years of Pegasys and the virus came right back within weeks. I will not be gentle here - the side effects are hottific - stories of a bad flu are greatly underexagerrated. Think of the worst flu you ever had & multiply it by 10 then add severe depression, extreme sensitivity to light & sounds, extreme mood swings and if you've taken LSD - there can ba similar unreal and out of body experiences. After 2 years of failed Pegays I figured wat did I have to lose - so I went on Infergen- daily injections & much higher dose of Ribaviran Mae by Vareant you can look it up) . I was almost hospilatlized several times for zero white blood cells but I took additional injections for this. Refusing ALL blood transfusions. I got high fevers and needed IV anitbiotics due to no white blood cells. Needeless to say I scraped bottom for another year but have been entirely clear of the virus for 3 years now. Its feels like winning the lottery! If there is a chance - go for it & don't stop - this is not a treatment to "try" It a a year long commitment and most folks can't make it through & quit.

You need to know that your chances are greatly enanced of clearing if you are anything other than a 1 genotype (I was) have a fairly low PCR count, are under 50 and fit and white - fat people have liitle chance of clearing & for some reason people of color do as well. You need to be on an excellent diet & overly hydrate yourself. There is a great book The Liver cLeanse dy Dr. Sandra Cabot I used as a bible and supplements helped me too - I took Hep Helper - lots of good organic Milk Thistle. & you want to take heaps of Vit.c - lemon is a great natural source. Become as healty & strong as you can before starting treatment - you can do this! It is possible to clear this virus and give yourself many years of a healthy life!

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 12/4/2007 8:56 AM (GMT -7)   
BTW - if you havn't already been vaccinated for Hep A & B - do so immediately - they can kill a person with Hep C. I always take the flu sot & pneumonia shot too.

Friend in Need
New Member


Date Joined Dec 2007
Total Posts : 7
   Posted 12/4/2007 7:40 PM (GMT -7)   
Thank you to everyone who replied to me. i cannot tell you how much I appreciate your taking time to repsond. I think i was in denial about this. I am just in the last 2 weeks coming to full grips with the reality and seriousness of this disease. I guess because i fely ok i thought I could ignore it. Your replies all had 1 common message: "Get treatment"

I am making a follow up appt with my GI doctor first thing tomorrow to start on my road of treatment. I do not know what lies ahead, but i feel that I can do this with support from good people like all of you.

God Bless

Oldtackle

tld
New Member


Date Joined Nov 2007
Total Posts : 10
   Posted 12/5/2007 6:31 AM (GMT -7)   
caryF & oldtackle,

i do tend to go overboard with only
"seeing" the roses until i get poked w/ the thorns! the side effects aren't pleasant & i am sure it will get worse before it gets better, hopefully if i start to give in i can get on here & you will all shape me up!
this place is a blessing, knowing we are not alone!
best to all~
tld

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/5/2007 7:54 AM (GMT -7)   
Good luck, OldTackle!  Don't forget about good nutrition and hydration, too.  Come back and let us know how you are doing, if you are up to it.  :-)

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 12/5/2007 8:23 AM (GMT -7)   

 Old Tackle,

I am so glad that you have made the decision to get treatment immediately. Also for your choice to start anew with diet and not drinking any alcohol. As an RN I have tried to impress on all my patients to educate themselves on their disease process. You should read everything you can on the disease itself as well as treatment, side effects of treatment etc. Become a lay expert on it. The more informed you are the less anxious you will be about it. You will see there are many benefits to knowledge. Firstly, you can make informed treatment decisions. You will know what questions to ask your Dr too. Be aware that some DR's prefer that you DO NOT ask too many questions.  I don't care what they think-I ask lots of questions and I want and demand straight answers. So learn-learn-learn. Secondly, it will help you to deal with your kids. If you are informed and knowledgeable about it you will be capable of helping them thru it. Smart people make smart choices!! Pink grandma is wise and helpful, she has alot of experience and can direct you to some excellent web sites to do research. I for one am proud of you and I hope you will keep us informed of your progress.

  Shelly


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 12/5/2007 10:27 AM (GMT -7)   
I agree with Shelly,

Get all the info you can before starting treatment. Ask your Hepatologist if you may speak with folks who've done it. Get specific info about your genotype, viral load, and chances of clearing. Did you know the 50% clear rate is a figure manipulated by the FDA & drug companies. It is legal for them to "interpret" all test results to their benefit. Ask for percentage rates of clearing after 1-3 years NOT 6 months as most drug companies tout.

Again, this in not to frighten you - but please get ALL the info you can and then make an informed decision. If you start this treatment you must finish it for it to work. Don't make the decision as a reaction but rather an informed choice. There are good Hep C support groups in lots of larger cities - the best way to find one is to call a University Hospital in your city.
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