The more I hear, the less inclined I am to do this "combo" treatment.
Cary, your hep C came back after it was supposedly cleared?
Yes, my Hep C came right back after treatment- very common as I'm a 1a. My PCR was undetectable during treatment & was right back up there at 1st post treatment test (2 weeks). They wanted me to wait 6 months for the test but I insisted. I've found they (drug companies - where Drs. get their stats) tend to leave this important info out when encouraging folks to do treatment. The real question we need to to ask is: What are my odds of being PCR undectable (HepC free) after 1 year post treatment? Drug companies like to use shorter term results because the "relapse rate is so high".
tman, you picked up an old post, but I'd like to ask how long have you been free of hep C now? How long were you on treatment and how long did you have side effects? I'm considering treatment now, but am inclined not to do it.
I haven't been around in awhile but to answer your questions I'm in early treatment. I can however, say one thing, unless you have clear cut, medically defined reasons: like stage 2 fibrosis - you don't require treatment. On the flip side of that if you have been told you need treatment and opted out, although some people choose to live with the virus, you have cirrhosis at about 20 years and liver cancer at about 28 years, to look forward to. If you don't take care of yourself in the interim there are a whole other slew of health problems to contend with. In a word though treatment can be a mother****er. Excuse the explitive.
Tman, since you are new and haven't been here in awhile, you don't know that I have already had liver cancer due to hep C, as well as cirrhosis. I underwent chemoembolization and a study med, TheraSphere, at Mayo for the cancer. Those treatments were only one time each and not too terrible. They enabled me to become operable. I had the right lobe of my liver removed in May '07. They keep a close check on me--in fact, I was at Mayo all day today, having blood work and a CT scan with two types of contrast. I will be seeing my hepatologist for the results tomorrow, and to discuss treatment.
I initially tried treatment back in '93, when I was first diagnosed. At the time, all they had was interferon injections 3 x a week. I had a big problem with plummeting white counts and was taken off of treatment. I tried it again several months later and the same thing happened. So after that, I didn't attempt treatment again. Now that I've been through cancer and still have mild cirrhosis, I am still not sure if I want to put chemicals into my body at a time when I'm feeling decent (except for fatigue.)
Also, I am 65 yrs. old. I've been through a lot in the past 5 1/2 years--7 major surgeries. If I were in my 40s, I would go ahead and take the treatment. But at this point, I really am reluctant. I've been ill long enough, and am able to live a reasonable life at this point. However, I would like to get rid of the fatigue, and of course I don't want the cancer to return. If it returns in the remaining lobe, I would then need a transplant.
Hi everyone, I did combo treatment in 2006 for 6 mo virus became undectable after that then went off treatment after 3 mo virus was back!! my viral load at beginning was 3,000.000.000 after 6 mo treatment was 300,000 so went down alot but I had a hard time with treatment I had severe anemia withing 3 wk after starting hemoglobin went from 14 to 9.1 almost had to have transfusion but just did procrit shots to maintain levels it sucked!! then just did interferon for 6 mo did nothing. my genotype is 1a & the Dr that did treatment should have known to do full yr but did not . I am see new Dr & that is what he told me so new Dr wants to do full year but cant due to insurance issues. My dr now told me that they have completed a trial or still doing trial on drug to replace ribivirin for less anemia side effects but wont know till probably end of year or next.. so there is always hope.. all I know is treatment was really rough for me & now having issues with thyroid, diabeties, that I never had b4 so I am very unsure about treatment again but sometimes u have to go thru the bad to get to the good!! just some input take care
Cary, I never knew my genotype, though my hepatologist said that most patients in the U.S. are Type 1. She had me tested and I asked yesterday if I am Type 1 and she confirmed that I am. Didn't mention 1a. What is the difference?
I was surprised that she didn't try to persuade me to try the combo. She was very understanding of my position, given all that I've been through. BTW, my viral count as of 09/08/08 is 300,000, down from 500,000 in Feb. I have done nothing different except diet. She also feels there will be better treatment options available down the road.
Cary, I gave myself a treat in April: Went to NYC for 5 days. Had a blast! It's my "hometown" and it was so good to be back there. I had another hernia surgery on the horizon then, so I wanted to do it before that and the subsequent recovery. I had planned to return this month., but thanks to the current economy, I wasn't able to do it. I am now aiming for late spring/early summer of '09.
Here's a question for all of you: Have you ever heard of ANYONE who has gone through the combo treatment with few, if any, side effects?
Leslie, I'm in FL, too! NE FL. As you well know, it's next to impossible to avoid the sun, although I certainly don't bake in it on the beach, being very fair-skinned.
BTW Cary, I can pass for 50, so no offense taken. And my head still tells me I'm young, although the surgeries definitely aged me--undoubtedly due to all the stress involved.
Good onya Connie! We should all have treats more often!!! I love ice cream (bad) and allow myself a scoop of dark chocolate on Sat. night if I've been good that week.
& great question! I do not know (or know of) personally anyone who's gone through treatment with few side effects. I've only "heard" its possible from Drs. and drug companies. Absolutely everyone I know who's done treatment (including myself) found the side effects totally debilitating and many could not complete the treatment due to such severe side efftecs.
I would love to hear from those folks who breezed through treatment, worked full time & had a normal life throughout and are now "cured" - 1 year undetectable post treatment. According to Drs. they're out there, where????
Please respond cured folks.
Cary, I have no control when it comes to ice cream--I'd eat an entire container with no problem. So I just don't keep it in the house. I've been doing fruit instead. However, I do get Edy's Tangerine Bars, which are yummy and especially refreshing in hot weather.
Leslie, I had a left hip replacement in Nov. '02, due to osteonecrosis (literally bone death.) Three weeks later, a part slipped out of place and I went in for a revision. That revision landed me in a body cast for 3 weeks and then locked hip and leg braces for 5 weeks...7 wks. in the hosp., one week at home in the braces. Nine months after that revision, I had the right hip replaced, due to ON. So that's 3 surgeries. In 2006, I had another revision of the left hip replacement, due to constant dislocations. In May of '07, I had the rt. side of my liver removed due to cancer. I developed an incisional hernia in my midriff several months after that, but had to wait for repair until I was fully healed from the liver resection. I had the repair done in Dec. '07. It lasted about 2 months, but again I had to wait for repair until I was healed from the Dec. surgery. May 29, '08, I had another repair. So that's 7 surgeries in 5 1/2 years. I think I've had my share!
I was diagnosed with hep C in '93 and definitely know that it was from use of IV drugs in '68-'69. I would say that you probably contracted it in '87, as it takes decades for it to show up in blood work and symptoms.
Leslie, I know you are happy that Ike went west, although those poor people in TX look like they will get hit hard. Are you getting some of the outer bands? We are. That's a huge storm.
Post Edited (hep93) : 9/12/2008 4:10:42 PM (GMT-6)