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29837 tn?1414534648

Magnum Update

It's been a while since I posted. My condition after the last treatments has gotten much worse. That treatment was with the traditional medicine and the added Victrelis. My MELD score is 9 (up from 7 for several years), and after 32 tests (I had to go from Las Vegas to Chicago at Northwestern Memorial Hospital to have them done), I was told by their Hepatologist that I am sicker than the MELD score suggests.

However, until I reach 15 or higher on the MELD score, I will not be put on the transplant list, although both the Las Vegas and Chicago Hepatologists are sure I need a transplant now. The only way I can get it now with this low MELD score is to obtain half a liver from a relative or friend.

I've lost 43 lbs. in 6 weeks. Hepatologist Dr. Gish says it's very unusual and it seems as though there may be something beside the liver causing all this havoc. At this point, I am weak, thin and can't work. Traditional blood tests are being done on a timely basis. Liver MRI was ok, as well as all other liver functions with the exception of a possible sugar work up to be kept an eye on to be sure I don’t have diabetes.

So, I wait and wait until I get sicker before being put on the list. I want to particularly thank Hector for all his support and knowledge in helping me to understand what’s happening to me. He is truly a wonderful person and we should all wish him much luck in getting his transplant soon.

So there it is. The Hepatologist feels strongly that the last treatment made the liver much worse (triple therapy with Victrelis). I can’t say everyone will be affected the same way as myself, but I would have your doctor keep a very very close eye on the triple treatment. By the way, I did get down to a 300 viral load from 2.3 million. However, it was at week 16, four weeks after I should have cleared at week 12. Therefore I was told to stop after 5 months

As others, I’m waiting to either get into a clinical trial with Pharmasset PSI-7977 or to wait for it’s release. I read that 40 out of 40 cleared with this new drug which has no Interferon (the culprit my doctor feels causes all this misery), and hardly any side effects.

Hoping everyone clears and has a good life ahead...

Ciao,

Magnum
31 Responses
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Avatar universal
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
Helpful - 0
1654058 tn?1407159066
I'm saddened to hear of your physical woes. You really helped me a lot when dealing with esophageal varices. I'm still dealing with bandings. You hang tight and keep the faith. I hate to hear you're having to deal with pain. It's hard to manage when you can't medicate like someone with a healthy liver. I know you've learned a trick or two about mental strength. I'm praying that you will utilize it as much as possible. There's got to be good news ahead!
Karen :)
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Avatar universal
Dear Magnum
I just read your recent news and am sorry to hear this. I will send you some prayers.
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Avatar universal
I am so sorry for what you are suffering. I think anyone who wold tell you not to "pollute" your body with pain relief at this time is an insensitive moron. You do whatever yo can to get some relief.
My sister went through the same thing you are going through. She was given a derivative of morphine.
My prayers are with you Magnum.
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223152 tn?1346978371
Magnum, you do what you need to do.  Pain is not something you can work through.  It is fortunate that you had some of those old "OC" pills.  I had no idea that the ascites could be so painful although it makes sense (because of the pressure, it guess).  I also did not know about the fact that it pulled out proteins and electrolytes.  

bean
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476246 tn?1418870914
I'm very sorry to hear that you are going through all this suffering with your health. I am sending you good vibes and positive thoughts from here in Copenhagen. Wishing you well with the transplant and a good recovery!!!! Lots of hugs and much love.

Marcia
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29837 tn?1414534648
The reason the doctor doesn't want me to have a 5th extraction of fluid (due to Ascites), is because out with the liquid comes proteins and electrolytes. I look like I’m pregnant, which in itself is funny because I’m a guy. Now I appreciate what a woman goes through when ready to deliver.

There were 4 bad days in a row ending today, with severe stomach pain. I had some 80mg Oxycontin pain pills and took one. These were given to me years ago and you cannot get these anymore. Because kids were grinding up the Oxycontin non-time release then shooting and snorting it, you cannot get 80mg Oxycontin (OC) anymore. Today’s Oxycontin (OP) is time-released over 24 hours. Grinding it up will not work any faster. There is a mechanism in the actual pill that will not allow that. Moving on...

This creates a problem for those who want fast release and fast relief. At any rate, I don’t want to get “hooked”, but at this point, it’s the only thing that gives me relief from the pain and agony. Yes, the holier than thou crowd will tell you it’s not right to pollute your body with a pain killer until one of theirs needs pain killers, then they will sing a different song.

Again, I want to thank all those who wish me well. Likewise, I hope we all become undetectable and one day will look back at all this when a simple one pill a day will render you 100% undetectable without torture...

Magnum
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317787 tn?1473358451
I am truly sorry for what you are experiencing, I am glad that you are a member here.  You are right, Hector is the best, he really puts himself out there and give so much of himself it is amazing.

Again, I am so sorry, I wish there was something I could do.

Dee
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Avatar universal
thanks fo much for posting, i've been wondering how you are doing.  i agree with your doc that the interferon is the hardest part of therapy.  i just finished 48 weeks in Denver.  at the end-of-treatment visit, the doc said if the triple does not work for me, that they will have 7977 in 18 months.
blessings
eric
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Avatar universal
I saw this  and meant to post.  I felt so bad for you....I was a little tongue tied.
Thinking of you though and hoping that a rabbit can be pulled out of a hat in the short term for you.

This may be that rabbit.  The update is that the Pharmasett drug was bought by Gilead, dang....at this point it has been about a year.  There have been a few delays but the transcript of what I include possesses the latest info on this.  You may need to do some skimming and the Q and A is also illuminating;

http://seekingalpha.com/article/944221-gilead-sciences-management-discusses-q3-2012-results-earnings-call-transcript?source=yahoo

Bottom line is that they will couple GS-7977 w/ GS-5885 in a single pill per day with and without riba (that would mean twice a day). They are testing those two combinations (the w/ and w/o riba cohorts) for 12 and 24 weeks.  They rather let slip that they think that it may work out to just the one pill per day.

I can't distill it all for you but it is worth a read.  They are also working on treatments for cirrhotics and there was also a hit of info for harder to treat populations.

Thinking of you Magnum.  If there would be anything  I could do, let me know.  I'm a few hours from Chicago, but if you were ever driving I'm a pit stop along the way.

Howdy, CA.

willy
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388154 tn?1306361691
Hi M. was just checking in(do that very rarely nowadays) and saw your post.Just wanna send my best wishes to you,even if I dont know if U remember me. Anyway your a hero just as Hector and frijole,candyman and many others here at the hep c forum. My best to you all!

      Comeagain (007)
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29837 tn?1414534648
Yes, we are in the same boat, but keep in mind the new "wonder" drug by Pharmasset called PSI-7977. I read that 40 out of 40 cleared! This is a non-Interferon treatment. I heard it should be released late 2013. Hopefully, Pharmasset is asking the FDA to put this on a fast track.

With these new drugs, the race is on to see who the winner is. That's good for all of us who are waiting. There is a lot of hope. If at least we can stop the progression by eradicating the virus, the liver should make an attempt to star healing.

Let me know how things go, and thanks for your concern. Keeping my fingers crossed for your husband's clearing and a good life ahead.

This is a battle to be sure. I've tried 5 treatments, and although I got very close to clearing, I didn't. The new drugs will finally kill the virus. Hang in there, we will make it...

Magnum
Helpful - 0
Avatar universal
Magnum, I'm really sorry to hear that your liver has declined so much after your triple tx w Vic experience.  My husband is in a similar situation to you, age 59, Genotype 1a, Cirrhosis (diagnosed Hep C in 2007, diagnosed Cirrhosis in 2010) except that his liver is still compensated.  He has treated and failed treatments 3 times, most recently with triple tx w Inc.  His hepatologist, who is at the University of Washington Medical Center Transplant Services, says that he too should not treat again with any Interferon based treatment.  He falls in the category of difficult to treat, poor responder to Interferon, patients.  So we are watchfully waiting for a non-Interferon based trial for Cirrhotics here in Seattle (or nearby) or for approval of new treatments.  My husband and I both send you our best regards and prayers for both a Hep C cure and a transplant ASAP.  We have been following your treatment attempts and battle since 2007 when we first found this forum, and to be frank, you inspired us to continue our battle.
Advocate1955
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789911 tn?1368636783
Im praying for you Magnum
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408795 tn?1324935675
So sorry to hear of your difficulties, I had no idea. Good luck buddy and take care of yourself.        
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163305 tn?1333668571
I think Magnum is getting his transplant in Chicago. You gotta do what ya gotta do and ya gotta go where ya gotta go.
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223152 tn?1346978371
Magnum, you do have a good attitude -- but moving to Chicago now, right before winter ---- what are you nuts?  I have lived in Chicago thru a winter and I hope you get a good coat and boots .  The wind bites hard.  But seriously, do what needs to be done.  Lots of good music in Chicago and I hope you get to partake in some.

hector, thank you for the education.  Learning about how these MELD scores work is interesting.  Wish I retained better.  I don't know how you write through all the encephalopathy, but you do it beautifully.

Kathy
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29837 tn?1414534648
Point well taken...

Magnum
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163305 tn?1333668571
My hepatologist go so irritated when I referred to myself as a transplant victim.
He told me I was a transplant survivor~ and he's right.
I am and you will be too:)
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29837 tn?1414534648
Thanks to all for you concern. I will post progress as it happens. Next step, move to Chicago (temporarily) for several months during and after transplant.

There is a lot of hope for transplant victims. For example, David Crosby of Crosby, Stills & Nash, had his transplant done in 1994 and is still touring 12 years later.

May we all clear with the new drugs if the old didn't work, and may you all lead a good life...

Magnum
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Avatar universal
I'm so very sorry Magnum!!!!
I agree with Kathy, I think... think in some people TX can accelerate
further damage and illness. I'm so sorry!!

Sending hugs
Elaine
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Avatar universal
I'm sorry to hear that things aren't going well for you.
I will keep you in my mind and heart.

Mike
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1689583 tn?1387752394
Terribly sad to hear this news , you are a fighter for sure  hang in there . My thoughts and prayers are with you , we will have better drugs available to us very soon , sooner I hope .
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Avatar universal
   I'm so sorry to hear this.  I hope the Doctors can find an explanation for the weight loss. You will be in my thoughts and prayers.  Hopefully the 7977 interferon free tx will be here in 2013, it must be very frustrating for you,knowing it is so close, but not yet available.
    You are an inspiration, and a strong fighter~
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