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29837 tn?1414534648

Magnum Update

Been a while, but wanted to post my condition. Seems clear that the tripple therapy did a lot of damege to my liver. I lost 43 lbs. in 5 weeks. I've gone to Chicago from my home in Las Vegas because there are no liver transplant facilities in Nevada.

I had a series of 32 tests done. They found that at one time or another in the past, I was exposed to TB. I'm now taking two pills daily for 9 months. I also take 1 1/2 times water pills. as my Ascites is very present. The doctor feels I have 10 liters of abdominal fluid built up, but does not want a sixth widthdawl of liquid because out with the liquid comes proteins and electrolytes, which will make me weaker. So I have to see what the outcome will be in the near future with the water pills hopefully bringing the Ascites back to normal.

Both Hepatologists (Las Vegas & Chicago) feel strongly that I need a transplant. But as most of you know, you have to be very very sick to get on the list. The MELD score must be at least 15. Mine has elevated from 7 to 9. So we wait and wait.

My days are filled with agony, nausea and lack of motivation and energy. Being an entertainer, I had to pass up jobs since the 4th of July, as the energy low level doesn't permit me to entertain as I want. I return to Chicago on the 23rd of next month and meet with the Hepatologist and Infectious Disease doctors.

My weight is holding steady at 165, down from my usual weight of 196 at 6' tall. As I hope for things to start moving faster so I can get into the list, I also hope any of you waiting will get your new liver and a new lease on life soon. Make the best of it and never ever give up. There is always hope. Hector is going to get his transplant within 90 days from what I understand. I couldn't be happier for him. He has been tortured enough, as most of us have, and deserves a new lease on life.

In closing, my Hepatologist here in Las Vegas has read results of the new meds being 100% in eradicating the virus. This is cause for celebration once it is released to the public.

Stay well my friends...

Magnum
14 Responses
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Avatar universal
I'm so  sad for how's is going and for how you feel. It's terrible suffer so much. Wish you my best and cross fingers for you.  
Helpful - 0
Avatar universal
I wish you could at least try the new DAAs before the transplant.
Helpful - 0
1494170 tn?1361750860
Very sorry to see this Magnum. Just wanted to wish you the best in feeling better and getting a new liver. Thoughts and prayers are with you!
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446474 tn?1446347682
"Triple therapy has poor safety in cirrhotic hepatitis C"

Tuesday, December 11, 2012
http://hepatitiscnewdrugs.blogspot.com/2012/12/triple-therapy-has-poor-safety-in.html?spref=fb

Triple therapy has poor safety in cirrhotic hepatitis C

By: NEIL OSTERWEIL,
BOSTON – In patients with chronic hepatitis C virus infections and compensated cirrhosis, a combination of a direct-acting antiviral agent, pegylated interferon, and ribavirin produced high on-treatment virologic response rates, but at the cost of significantly increased toxicities in an interim analysis of a French multicenter trial looking at the safety of the regimen.

Although the efficacy of direct-acting antiviral regimens involving the protease inhibitors telaprevir (Incivek) and boceprevir (Victrelis) combined with pegylated interferon alfa-2a or -2b in combination with ribavirin (PEG-IFN/RBV) in cirrhotic nonresponders to prior therapy was good , their safety was "poor," according to Dr. Christophe Hézode of the Hôpital Henri Mondor in Créteil, France.

Virologic response at 16 weeks in a per-protocol analysis was associated with a virologic response rate of 92% with telaprevir and 77% with boceprevir.

However, there were increased rates of serious adverse events and more difficult-to-manage anemia than in phase III trials for telaprevir and boceprevir, which included only a few patients with cirrhosis, Dr. Hézode said at the annual meeting of the American Association for the Study of Liver Diseases.

In treatment-experienced cirrhotic patients with platelet counts of 100,000/mm3 or serum albumin levels below 35 g/L, clinicians should weigh the risks and benefits of such regimens, with patients treated on a case-by-case basis because of the high risk for severe complications, Dr. Hézode said.

"However, cirrhotic experienced patients without predictors of severe complications clearly should be treated, but cautiously and carefully monitored," he added.

Dr. Hézode and his coinvestigators in the French Cohort of Therapeutic Failure and Resistances in Patients Treated With a Protease Inhibitor (telaprevir or boceprevir), Pegylated Interferon, and Ribavirin (CUPIC) trial studied two cohorts of patients with chronic hepatitis C virus (HCV) infections, and compensated cirrhosis (Child Pugh class A) who had either relapsed or had only a partial response to prior therapy, with partial response defined as at least a 2 log10 decline inV RNA but failure to clear virus by week 24.

He presented data on 497 patients who had completed 16 weeks of therapy on one of two regimens. In one cohort, 292 patients received 12 weeks of telaprevir 750 mg every 8 hours, and PEG-IFN alfa-2a (Pegasys) 180 mcg/wk with ribavirin 1,000-1,200 mg/day, followed by PEG-IFN/RBV through 48 weeks. In the second cohort, patients received a 4-week initiation phase with PEG-IFN alfa-2b (PegIntron) and ribavirin, followed by 44 weeks of boceprevir 800 mg every 8 hours, PEG-IFN 1.5 mcg/kg per wk, and ribavirin 800-1,400 mg/day.

At week 16, 45% of patients on telaprevir had had at least one serious adverse event, with 14.7% terminating therapy because of a serious side effect. In all, nearly one-fourth (22.6%) discontinued therapy, and there were five deaths: from septicemia, septic shock, pneumopathy, endocarditis, and bleeding esophageal varices. Other complications in this group included grade 3 or 4 infections in 6.5%, grade 3 or 4 hepatic decompensation in 2%, grade 3/4 asthenia in 5.5%, and renal failure in 1.7%.

Hematologic adverse events included anemia of grade 2 or greater in 30.4%, erythropoietin use in 53.8%, blood transfusion in 16.1%, and ribavirin dose reduction in 13%. In addition, 2.7% of patients had grade 3 or 4 neutropenia, and 1.7% had grade 3 or 4 thrombocytopenia.

In the boceprevir group, 32.7% had at least one serious adverse event, 26.3% discontinued prematurely, and 7.3% discontinued because of serious events. The cause of one death was described as pneumopathy. Grade 3/4 adverse events involved infections in 2.4%, hepatic decompensation in 2.9%, and asthenia in 5.8%. There were no cases of renal failure in this group.

Hematologic events in patients on boceprevir included grade 2 or greater anemia in 27.8%, erythropoietin use in 46.3%, blood transfusion in 6.3%, and ribavirin dose reduction in 10.7%.

Grade 3/4 neutropenia was seen in 4.4%, and grade 3/4 thrombocytopenia in 5.4%. Two patients (1%) in this cohort received thrombopoietin.

In a multivariate analysis, significant baseline predictors of severe complications (death, severe infection, and hepatic decompensation) included platelet counts of 100,000/mm3 or lower (odds ratio, 3.11; P = .0098) and a serum albumin level below 35 g/L (OR, 6.33; P less than .0001).

Baseline predictors for severe anemia (hemoglobin less than 8 g/dL) or blood transfusion included female gender (OR, 2.19; P = .023), no lead-in phase (OR, 2.25; P = .018), age 65 years or older (OR, 3.04; P = .0014), and hemoglobin 12 g/dL or lower for women and 13 g/dL or lower for men (OR, 5.30; P less than .0001),

The study was sponsored by ANRS, the French National Agency for Research in AIDS and Viral Hepatitis, with support from INSERM, the French National Institute for Health and Medical Research. Dr. Hézode said that he has no financial conflicts of interest, but disclosed serving as a speaker and adviser for Abbott, BMS, Gilead, Janssen, Merck, and Roche.

hector
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190885 tn?1333025891
good luck magnum...hang in there.....billy
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Avatar universal
I feel so badly that you're not feeling well Magnum.
You've certainly been through an awful lot.
I will keep you in my heart and mind and hope for a great outcome.

Be well,
Mike
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317787 tn?1473358451
Hey there!  I just saw your post.  I am so sorry for everything  you have gone through and continue to experience.
I hate this damn virus and the ignorance that goes with it

I wish you the very best
Dee
Helpful - 0
Avatar universal
I'm sorry that you are so ill and suffering so much.  I wish there were something we could do to help.  It is hard to think that people have to become so ill before they have an opportunity to become well.  I just learned last week that here in Washington State people are able to be transplanted with a MELD score of about 16-17 and they've been able to transplant everyone who qualified and needed a liver in the past year or so.  That was good to hear.  Please keep us posted Magnum.  We think about you and send you good wishes.
Advocate1955
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1815939 tn?1377991799
I am very sorry to read that you are having more medical problems. I have wondered how you are doing and so I am glad that you posted to let us know. Here is wishing you the very best for the future, a future with a new liver and a new lease on life.
Helpful - 0
1116669 tn?1269143266
As all the others have expressed I'm sorry for the adversity you're facing: being unwell, living with a question mark, and suspending your creativity... I hope your symptoms become more bearable as you wait on the next chapter. d
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Avatar universal
OOps....I replied to the other thread w/ the same name by accident on the other community forum.
==========================

I am sorry to hear that things are not well for you now.

It looks like you may be in the market for a TP. I am hopeful that one comes your way soon.  Obviously, you have to get worse for that to happen and so i am a little conflicted writing this.

You just have to walk the line on doing whatever you can to stay in
accordance with what your doctors require of you.  I have a few friends who have gotten TP's and of course there are a few on this board as well.  

The good news is that now.....once you get a TP there looks like there will be therapies which will rid you of the virus.  The issue of HCV attacking the new liver will be a thing of the past, or so it appears.

Thanks for checking in.  I'm sorry to read that the triple therapy wasn't the ticket, but the new drugs should make the next time the last time.  Crossing fingers on the other health issues.......

Willy
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Avatar universal
Wishing you the best. My prayers are going out to you.
Helpful - 0
223152 tn?1346978371
I guess you knew we were worried about you.  I am amazed at how much damage has been done with triple therapy.  I mean, things were not rosy before but they sure went downhill after that.  I am also surprised about the TB since hector had the same issue and had to take the pills too.  He had to stop them before going on tx.

It sounds like you have taken up residency in Chicago but are still traveling back and forth between there and Las Vegas.  I would imagine that would be hard too with the pain and exhaustion, much less the additional diuretics.  

All I can do is hope your time comes soon.  Thinking good thoughts your way.

bean
Helpful - 0
163305 tn?1333668571
Oh Magnum, I'm so sorry to hear you are ailing.
I remember all too well being on a no-salt diet trying to stop the ascites from returning.

Is there a possibility of you getting a live liver transplant ?
Obviously you need someone willing to be your donor.
One of the advantages is that you are not on a waiting list.

You are right about Hector and he has been undetected with his trial meds since week 2. For someone with advanced cirrhosis, this is simply amazing.

Wishing you only the best. Feel free to pm me if you want to chat with someone who has been there and made it to the other side.

Helpful - 0
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