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Posted 4/27/2011 3:28 AM (GMT 0)
As this is becoming a reality and is expected to be available in June, here is some information about it (with thanks to David):

http://news.yahoo.com/s/ap/20110426/ap_on_bi_ge/us_hepatitis_drug_vertex

Hugs,

Connie

Posted 4/27/2011 4:02 AM (GMT 0)
Thanks Connie & David!
Didn't like the spin they put on it though. The future is hopeful again.
Posted 4/27/2011 11:00 PM (GMT 0)

What spin would that be?

From today:

In general, telaprevir's cure rates are higher than those seen with Merck's boceprevir. The two drugs are expected to compete in a multibillion dollar global market.

Would your doctor be amenable to your trying Vertex's drug instead of Merck's?  For months I've read similar findings...that Vertex's brand is better.

Hugs,

Connie

Posted 4/28/2011 3:46 AM (GMT 0)
And a friend of mine works for Vertex!  I used to work for Merck though but they shut our San Diego site down in 2005...so if Vertex's is better try that one!  I'd be happy to hear great patient outcomes regardless of which company's drugs get them there though.  It's always nice for us in the drug making industry to hear the positives of medications we've helped produce. 

I wish you all low to no viral load and better health!

Posted 4/28/2011 5:30 PM (GMT 0)
I will ask him about it Connie, and I will be glad to post all the results as they happen.
Posted 4/28/2011 6:07 PM (GMT 0)

Thanks so much, Jim!  You can be a pioneer here in regard to the new treatment.

Hugs,

Connie

Posted 4/28/2011 7:27 PM (GMT 0)
The vote is today - I haven't seen the outcome yet.
Posted 4/29/2011 11:30 AM (GMT 0)
The FDA advisory committee voted 18 - 0 to endorse Telaprevir

Boceprevir (Merck) has a decision date of 7th May. Telaprevir had a decision date of 23rd May, however there is talk that the FDA may announce both on 7th May.
Posted 4/29/2011 5:11 PM (GMT 0)
Wow! Thanks Hepmom. I will contact my PA and drive her nuts...LOL.
Posted 5/3/2011 2:42 AM (GMT 0)
still waiting on the release date - nothing I can find out yet. My Dr. said June, and I'm betting that he had the inside scoop.
Anybody hears any different - please post!
Posted 5/4/2011 9:24 PM (GMT 0)
Jim, I think it will be June, for sure:

http://www.medicalnewstoday.com/articles/224075.php

http://www.boston.com/business/healthcare/articles/2011/05/04/hepatitis_drugs_new_name_incivek/

Expect Merck to follow suit.

Credit to David for the links and info.

Hugs,

Connie

Posted 5/4/2011 9:46 PM (GMT 0)
I visited the transplant clinic today at MGH. My labs were messed up as to my viral load count after 1-31-11, so they took blood and I'll hear what they are on Monday pm. My December count was 160,000 and the January count was 40,000. With luck it will be lower, or non existent. Then my nurse/practitioner asked if I knew about the new protease inhibitor addition to interferon/ribavirin. I told her I did, though it wasn't available to transplant patients. She explained that very shortly it was going to happen. I asked if I could be a guinea pig and she said that I would be a good candidate. My only bad test was that I'm slightly anemic, due to the ribavirin. They checked out my breathing and for now things are acceptable. On the way out I had a chat with the transplant coordinator and she asked me if I'd be willing to speak to pre transplant patients by phone. I told her no problem and filled her in on HW and how pleased I've been with the folks here that have had transplants. I want to see more success stories here, Connie in particular.
Posted 5/4/2011 10:07 PM (GMT 0)

David, thanks for the update!  Hope your viral load has gone down!

 I have a question re: transplant evaluation:  Who is the first person you see before testing?  The transplant coordinator or the transplant team?  I would imagine that would come before testing, but I don't really know.

Hugs,

Connie


Posted 5/4/2011 11:10 PM (GMT 0)
The first day I saw the Transplant Coordinator (Susan Noska), then the shrink, the surgeon (Dr. Hertl) then a couple of other folks regarding insurance and general questions about finances and medical records. I never sat down with the team at one time.
Posted 5/4/2011 11:43 PM (GMT 0)
cool  David, I hope that the viral load is undetectable when you get your results back, too. I would opt for the telepevir if it was offered to me! I am still waiting, after almost 2 years for my liver to regenerate itself. My doc says he cannot prescribe the combo until I am off the diuretics and everything else I take daily. Recently I tried to cut my dose in half and retained fluid within a week, so it does not look to promising. For all the people who post and frequent the website who have Hep C, the combo can have side effects but it may wipe out the virus so you will never experience the latter stages or Cirrhosis. I am still kicking myself for not going through the combo back in 2000. I lasted 2.5 months and said why am I doing this to myself? I'm asymptomatic and healthy. Little did I know the Hep C was doing push-ups while I thought my liver was healthy! It wasn't. BostonMike.
Posted 5/5/2011 12:30 AM (GMT 0)
Mike,
I'm sorry we missed hooking up at MGH. I'll be posting how my viral load is next week. Sorry to hear your fluid levels are still high. Mine were out of control until the transplant. Stick with it, you'll get get there.
Posted 5/5/2011 12:59 AM (GMT 0)
Thanks for the info, David.  I suspect that Mayo will act in the same way.

BostonMike, good to see you posting again!  I still take diuretics, but if I had to stop them for any reason, I think I could do so without much beyond some puffiness.

Hugs,

Connie

Posted 5/5/2011 2:29 AM (GMT 0)
For Connie: Day 2 - First I had a CT scan with contrast. Then it was off to a 2 hours ultrasound. They went from the front, back and sides. Then standing up and more. It wasn't bad, just boring. That afternoon, I spent my time with a long 2 hour ultrasound of my chest. After that it was time for a stress test. No treadmill, just drugs to up your heart rate, or a built in bike you had to pedal lying on your back. I did the bike.
Posted 5/5/2011 6:12 PM (GMT 0)
I am a 59 yr old Male that has been Diagnosed with "End Stage Liver Disease" I went through the evauation and met everyone From My Liver Doctor, Hemotoligist, The Coordenators My Own Nurse Pract. and Everyone has treated me really Great. My MELD Score is 16 and Now I have an infectious Disease Doctor that is treating Me for TB I do not have it I was exposed to it and I have to tell You I have not Been feeling well at all!!. I have to say That this whole thing just scares the you know what out of Me. I am Taking the Lactalose, and the Xifaxan for ammonia and I have Passed out in the office before and wrecked a car. ( I do not Drive Much Anymore) The gave Me an order for a MRI Liver Function and Now More blood work They sure like to take alot of blood. A few weeks ago they took 38 vials. I Know I might sound confusing, its the ammonia. I have the Edema in the feet I elevate , Medicate, and wear surgical socks. and now I feel like My Stomach is really Bloated and I am afraid its Fluid. I also am Talking to Myself and others and not making sense. I have a Spouse of 12 yrs that thinks I am not really sick I am trying to work a little. because of money. Disability only gives 675.00. I used to have a 6 figure income till the Credit Crash Has anyone had experiance with any of this I am at a loss right now and really down.
Posted 5/5/2011 9:16 PM (GMT 0)

Hi, Doc58, and welcome to the forum.  If you know how to copy and paste, it would be best to do that with your post here and start a new topic of your own (give it a title.)  Just hit New Topic instead of Reply.  That way you will not get "lost in the cracks" and will get more responses.

The passing out I would think would be blood pressure too low or possibly vagus nerve syndrome.  It's not from Lactulose or Xifaxan.  In fact, due to your confusion and other symptoms, I would suggest that you increase your Lactulose.

Your wife may be in denial.  Anyone who has liver disease, or is a potential liver transplant patient, is sick.  And you can tell her I said so.

Hugs,

Connie


Posted 5/8/2011 8:19 PM (GMT 0)
Doc 58,
I've been through much of what you have, right down to a partner that wouldn't acknowledge my illness. When she finally did see how sick I was, she dumped me as "she didn't want to have to take care of a sick boyfriend" (15 years of domestic partnership).

If you're confused, maybe you need to take more lactulose. The best thing you can do, is cut out salt and beef, but eat as much fresh fruit and vegetables as possible. Worrying won't help you feel better. Concentrate on doing the right things and listen to your docs. Where are you being treated?
Posted 5/8/2011 9:46 PM (GMT 0)
Doc58, I know where you are, as it is where I just left. I am a 56 year old in the same same. My girlfriend is trying to hold us above water as we go from 120k a year to the 674 a month. I wasn't able to continue to work because of all of the side effects of my liver disease. Everybody talks about the side effects of the medications we have, or will have to take - but not many talk about the effects that it is having on us unseen in our life to this point. I still have a hard time letting go and facing the fact that at my age I am done with any hopes of returning to the workforce in any capacity I am accustomed too. I had to face this and deal with it so that she could. We now discuss how we are going to do things differently to maintain basic acceptable lifestyle. I mean BASIC too, and it is working. The sad thing is coming to the understanding that life was never meant to be spent the way most of us live it. The thankful part is that we get a mulligan of sorts, a chance to really live life. I am able to now slow down and see just how beautiful things can be. I now occupy my time with the creative side, my grand kids, and making life for my girl as enjoyable as it can be, and it seems that the more I can see - the better person I become. Money has stabilized and is actually beginning to get better as more people are liking my arts. I sculpt, and carve to keep my hands and mind busy. My days click by, and I will soon be on the other side of this thing. Life truly isn't the race to get to the finish - it is the journey. Take a breath.
Posted 5/8/2011 11:05 PM (GMT 0)

Well said, Jim.  After I was diagnosed with hep C, I had to make the decision to go PT instead of FT.  I had already been feeling fatigued before diagnosis...which is why the test was done and hep C was diagnosed.  I chose to cut back on everything instead of working myself to death.  However, after 12 yrs. of PT with hours gradually dimishing and having hip replacements, I had to apply for SSD.  So far, so good.  I do get more than you.  Bills are all paid on time, I've never gone hungry, and have a little extra spending money.  It's getting tougher in this economy since there's been no increase in 2 yrs. and everything is rising in cost.  But I know I will be okay...and so will you.

Hugs,

Connie

Posted 5/10/2011 6:42 PM (GMT 0)
The Transplant Clinic called me today. My viral load is 66, almost undetectable. I have labs monthly and my next appointment is in early August.
Posted 5/10/2011 7:49 PM (GMT 0)
That's GREAT news David!
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