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Posted 7/27/2013 2:03 PM (GMT 0)
Hi Connie and all you fighters!

I came on few months back. Both hub and I (63 and 60) had hep c in our labs. Both went to GIs. I was blessed-I was a rare one to purge the virus from body, and so happy kept my daughter hep c free.

Hub had liver biopsy and he is stage 3. I keep reading end stage liver disease. Is THIS the end for him? He is very tired , nauseated..normal. Will be seeing GI to start cocktail soon. Can we stop this from progressing?

Thanks-also has raging RA so many meds are of the plate to treat either one

God Bless you all

Mags

Post Edited By Moderator (hep93) : 7/27/2013 12:44:35 PM (GMT-6)

Posted 7/27/2013 2:49 PM (GMT 0)
Welcome to forum. Others will be in to welcome you and all.

The first and most important thing is to get him to a specialist, a hepatologist ASAP. Preferably one who is affiliated with a transplant center. Has he been treated before for hep? Whereabouts are you living?

I have to leave but others will chime in soon. Hang in there :). You came to the right place.
Posted 7/27/2013 4:13 PM (GMT 0)
Thanks so much Mae!

Heis seeing a GI. We live on the Gulf Coast Mississippi (Katrinaville). I am sure New Orleans has specialists etc.

He contracted hep c in 1970's while working in a plasma plant-no decon suits masks or anything. He got sick, then better and his liver numbers have been normal since...until recent labs with new doc.

He was always a light drinker so that is not a tuffy for him.

We have a 16 yr old daughter(we are 60 and 63) She so needs her Papa there.
I am so scared, he already beat terminal cancer. How many lives does he have left????

Thanks for listening
Mags
Posted 7/27/2013 6:59 PM (GMT 0)
Hi, Bayoub2/Mags. I do remember your user name. I have a few questions: As Mae asked, has your hubby ever been on treatment for hep C previously? What type of cancer did he have? If it was terminal, he overcame it. Bravo! The most common type of cancer for those with hep C is liver cancer--hepatocellular carcinoma or HCC. I've had it twice, the 2nd time requiring a liver transplant.

He can start his hep C treatment with a GI doc, but a hepatologist is preferable. They are much more knowledgeable about liver disease. MS is not the bet place to be treated for liver problems. He must drink absolutely NO alcohol, which sounds like it won't be a problem for him.

What type of "cocktail" will he be on? The new triple treatment with Incivek or something else? The best thing you can do is to become very knowledgeable about hep C and treatment for it. Be sure to read the extensive info about it in the folder at the top of the page, Hepatitis Resources.

With one of the newer treatments, your hubby has a good chance of obtaining a sustained viral response (SVR.) If he maintains that for 18 mos. past the end of treatment, he will be considered cured.

Treatment is not easy and he will need your support. So take good care of yourself and advocate for your husband. You will need to present a united front in whatever lies ahead.

Hugs,
Connie
Posted 7/27/2013 7:53 PM (GMT 0)
Hey Connie
So nice to hear from you.

He has never received treatment for hep c-labs showed normal function (which I now know means NUTTIN') and has never had any symptoms..(except when he first got it in 70's)

He had a very aggressive prostate cancer back in 2006. Because of his "young age" and its' aggressive nature, the surgeon said 2 years. It had spread a little to bladder valves and other tissue. Surgery and radiation. The doc told me he could not remove it all without killing him. He has had no readable levels in 5 years!!! Yah!! Now I think of all that radiation tearing down his immune system.

He has not had his post-biopsy with doc...I think we will ask to be referred to Ochsner or LSU in New Orleans to see a hepatologist. His brother died 3 years ago from complications of hep c.

He is afraid. His RA is being treated minimally b/c all the good stuff is liver toxins. The RA has left my hypersonic hubby sitting in the recliner, so he is concerned that cocktail will incapacitate him. We have a 16 yr old daughter.

But what does Stage 3 mean? I know he is cirrhotic.

Anyhoo, thank you as always Miss Connie, always good honest info. How is your transplant holding on?

Oh he is genotype 1, not sure A or B and he just told me his cocktail will be with the incivek.

Thanks again...I'm sure the newbie will be back-I am just so grateful that neither I or our sweet girl will have to deal with it also!. My best to everyone on the board

Mags

Post Edited By Moderator (hep93) : 7/27/2013 6:20:01 PM (GMT-6)

Posted 7/27/2013 8:45 PM (GMT 0)
Mags,

Welcome back, though your earlier posts may have been before my joining HW as a member and then co-moderator.

I think your plan to find a specialist in NO is a good one.

We have had several members with successful stories there. Lots of driving but worth it.

Be certain the Hep Doc is convinced that the specific new drug used is the one that is most effective on his exact genotype.

With hubby's other problems, the treatment may be difficult. you need a super duper specialist.

Hugs,
Carol

Post Edited By Moderator (hep93) : 7/27/2013 6:22:49 PM (GMT-6)

Posted 7/27/2013 10:53 PM (GMT 0)
hi bayoub, i also remember that name. cant believe ive been here that long. heres the good news!!!!! your hubby is not cirrhotic. he has time to wait for better and friendlier tx. triple tx with incivek is the toughest of all, and can last for one year. its not up to the dr. it is a response guided tx if you are not und by 4 weeks YOU HAVE TO DO 48 WEEKS. if you fail the triple tx, you cant use the new tx coming out next year. you would have to wait until some time in 2015. and the clearance rate for triple with inc is about 70%, for one year. the new txs are 92% for 12 weeks. also, tx with incivek can cause resistance issues. if you fail on triple you may not be able to tx with 2nd generation PIs. barry

Post Edited By Moderator (hep93) : 7/27/2013 6:22:03 PM (GMT-6)

Posted 7/28/2013 12:30 AM (GMT 0)
Mags, I made a little joke about it not being terminal...went back and corrected it to "overcame it," as I thought you and others wouldn't "get it."

It could be that treatment may incapacitate hubby for awhile, what with his RA. But that remains to be seen. He might want to wait a bit until newer and better treatments become available within the next 6 mos. Type 1a is the most common in the USA, and is the most difficult to treat.

I have Grade 2, Stage 3-4 fibrosis, which I assumed was just a breath away from cirrhosis. Despite transplant, my hep C is running rampant with my new liver and causing all sorts of problems. However, my transplant coordinator (TC) told me that is not true...that it takes some time to progress to cirrhosis. I have to wait for at least one surgery to be done and a couple of procedures to be addressed before I can have treatment.

Hang in there and contact a TP center in LA. You want your hubby to get the very best care possible, especially due to his RA.

Big hugs,
Connie
Posted 7/28/2013 11:43 AM (GMT 0)
thanks so much for your replies-I see I have alot to learn. Yes, even his Doc mentioned waiting on this new drug tx next year. Maybe by then we can get alittle more control over RA

I am so sorry Connie that things are not going better-you are such a fighter as am I, but sometimes we just need a little break from it all, y'know?

Do I need md referral to talk to a tp CENTER? Hubby siad he wouldn't do it, he'd just die-BUT he won't say that when I stick a picture of his daughters in his face-just fear talking I guess

You all are real troopers and I am glad I can come here. When I joined Fibro forum in 2005, my husband thought it was a bunch of whiners (WELL, WE ALL HAVE OUR BAD DAYS) but this is where I get info, support and HOPE

Thanks again
Mags
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