two treatments for hep c that didn't work

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ga.
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/5/2008 1:58 PM (GMT -7)   
two treatments for hep c that didn't work... what's next

ga.
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/6/2008 7:40 AM (GMT -7)   
thanks much for your reply! I didn't know how to use the net to talk with anyone, and still learning. My husband has hep c and after two treatments wow he's confused about so many things. I pray that he makes the best efforts to stay alive but he's to a point that why bother. He's had hep c for probably twenty years or better. It's good to know people like you respond to people that have questions even after your own loss. God bless you.

1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 4/6/2008 7:49 AM (GMT -7)   
ga, hi and welcome to HealingWell. This forum is a great resourse for information and you may want to read old posts to gleen some information and education. The participants and our forum moderator are well versed in liver disease and will be able to help you find answers. A huge bonus to posting here is the compassion and empathy that you will receive. You can feel free to ask anything you like, you can vent, and you can get educated all at the same time. Again, we're glad you're here.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


ga.
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/6/2008 8:01 AM (GMT -7)   
Shelly,
Thanks for the welcome... as everyone is I'm still searching for answers and trying to figure out what's next. Two treatments didn't work and there's nothing left to do. I'll keep praying.

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/6/2008 8:21 AM (GMT -7)   
ga, NEVER EVER GIVE UP!!!!!!!!!!!!!!!!!!! What kind of diet is he on? How are his labs? What about the transplant list? What do the dr's say about other treatments and what options does he have? Do as much research on the net as you can and see what is offered and new. Ask the Dr for newer treatments and experimental drugs if they offer you little else. CaryF posts here quite a bit and she is extremely knowledgable about diets for liver disease. Prayer is wonderful and I encourage it but you have to be proactive too. I know you are both frustrated and tired but don't give up. Keep looking for answers. There are others that have posted and have had unsucessful treatment that are still going strong. Hopefully one of them will read your posts and have some suggestions for you. GOD Bless

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 4/6/2008 8:46 AM (GMT -7)   
Hello GA and Shelly,
Welcome to HealingWell GA. You will find out that we have some very knowledgeable people here. Hope you get all the answers you need.

Have a good day..............
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.


ga.
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/6/2008 9:56 AM (GMT -7)   
He doesn't work..too tired most of the time, but also takes vicodin and that what keeps him going. He has been treated twice and the last Dr. is a liver transplant specialist/infectious hep c specialist. Second experimental treatment showed signs of improvement, but just for a short time. No swelling anywhere, but blood in stool for many years which is being checked with a upper GI and maybe a stint will be inserted if needed. High virial load isn't good! I will look for the book you've mentioned...Dr was no help with Social Security but still working on that. The side effects of treatment are really bad so I don't know how people keep jobs going through treatment. He is thinking about a third treatment... we'll see. Thanks much for all the info!

ga.
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/6/2008 10:16 AM (GMT -7)   
Shelly, He doesn't qualify for a transplant because the hep c count is too high. Vertex experimental treatment didn't work either. He is most worried of course about the time he has left but we don't know that answer either. Thanks for the support.

ga.
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/6/2008 11:00 AM (GMT -7)   
dansbrother, I will ask for the toxin count next dr.s visit and make sure he stays with his GI doctor. The S.S. battle is now going on the third year. The bleeding is not a large amount, but has been there a long time. If you know this stage what's the next stage? Just trying to be ahead of the battle!

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 4/6/2008 11:20 AM (GMT -7)   

Dear Ga,

Listen to Shelly & NEVER give up. Diet & lifestyle will be the key now to achieving a better quality of life. Get Dr. Sandra Cabot's book The Liver Cleanse Diet. It will do wonders.  

I know of no protease inhibitor with or without Peg that works to clear HCV. Its an idea that had its time as part of the HIV cocktail - but there's no evidence to suggest it will work to achieve a zero PCR SVR for HCV.

There is a last ditch treatment that few people do. Its called Infergen (non-peglated interferon - peglation weakens the molecule) EVERY DAY & a big jump in Riba. Its so intense you will need Dr. approval to go on it.  Its almost a kill you to bring you back treatment - its that strong. But you may want to look it  up on the internet anyway. I know of nothing new outside the peg/riba combo treatment on the horizon.

Best, Cary 

 

 

 

 

 

 


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/6/2008 12:03 PM (GMT -7)   
ga, it sounds like you have received some good adice today. I would adivise your husband to get on a healthy diet, take his Rx'd meds, get on a mild exercise program (whatever is tolerable for him), keep ALL Dr's appointments, and stay away from anything that will adversly afect his liver in any way shape or form. I hope he can avoid early muscle wasting by doing a little bit of exercise even stationary or nonareobic. It seems that once the muscle wasting begins the patient has less and less energy. If his ammonia levels are decent then he will at least be clear headed most of the time. He needs to stay well hydrated so push water and other fluids. There is some controversy about how much protein liver patients should consume. Some Dr's go by the older theory that the protein hurts the patient, some newer theories say that they need the protein. So study up on that and look at both theories in detail. That way when you go to the Dr and ask about protein in his diet you will have the advantage of prior knowledge and can ask the Dr legitimate questions on one vs. the other. CaryF is right in that the diet to cleanse the liver is of the utmost importance. She has had first hand experience with it.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


ga.
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/6/2008 1:34 PM (GMT -7)   
thanks to everyone for your knowledge and kindness!

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/7/2008 12:03 AM (GMT -7)   
Hi ga,
Welcome to the forum. I've found it to be an amazing group with lifetimes of knowledge and caring.
I'm in a similar condition as your husband but less critical state. I have had Hep C for at least 30 years and am now at a point where I cannot work due to tiredness and mind-fog (ammonia). I have acites (abdominal fluids), varices (enlarged GI veins), enlarged spleen and low platelet count.
Based on my history and experience to date, I don't understand why your husband wouldn't be able to have a liver transplant. In my case, my Dr. cannot successfully treat me for the Hep C until I have a transplant. My low platelet count would be cut in half by the Interferon, causing a dangerous bleeding situation. While my new liver will become infected by the Hep C, this previously non-infected liver is easier to cure.
Perhaps I don't understand the impact of a high viral load but you may want to read the Pittsburg newspaper's (Tribune Review) March 2008 series on liver transplants. Setting aside the treatment aspects for a moment, there was an obvious difference of opinions as to when and who got transplants based on the goals of the individual transplant centers. For them, it is both a health and business decision.
Some centers made decisions based on staying inside the success rates expected by United Network for Organ Sharing, or UNOS, which sets organ allocation rules under contract with the federal government. Many centers will refuse to do complex transplants due to increased failure and complication rates, which might make their success rate look bad and disqualify them from certain insurance company 'approved lists'. You can see these success rates on the UNOS site.
At long last, my point is that you may want to get a second opinion from a doctor at a different transplant center. In my investigations, it is obvious that I can manipulate when my transplant occurs by the selection of particular transplant centers and doctors.
I hope that this is helpful, although I know that I am tossing you a handful. I hope that your husband doesn't give up - and that whatever occurs is successful. I'm sorry that you have to deal with so much. Hang in there.
Be well, John
If I weren't having so much fun with you guys,
I'd love to be out sailing on Long Island Sound
Woodmont on the Sound, Connecticut


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 4/7/2008 3:12 PM (GMT -7)   
Dear GA,

John CT as some good points & info for you. Liver transplant criteria is not based on PCR. PCR can vary widely. Please get another opinion and do some research to learn this for yourself. I was once at 60M and never on the transplant list. MELD score is a much better criteria (in addition to other tests). You are msinformed about PCR as it relates to transplant eligibility.

Cary

ga.
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/7/2008 5:10 PM (GMT -7)   
JohnCT
Thanks so much for the information you've provided! We've been told so much by so many it's hard to decide whats right or wrong. I find it hard to believe that hep c isn't a common news health topic. You've given me some more hope to move forward. Don't worry... We gotten this far.. there's no giving up on my watch!
ga.
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