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...
HectorSF is in that trial is was und at 2 weeks. After 12 weeks he can get his transplant and theoretically should be entirely hep C free after surgery.
You know I had a live liver transplant.
One wonderful thing about them is there is no waiting, it is not dependent upon your MELD score.
Not all transplant centers perform them and of course, you need a compatible donor.
If you'd like more information and I can help you in any way, please send me a pm.
It is good to hear from you, and thank you for the update.
I am very sorry to hear that your condition has worsened and that you are so ill. My heart goes out to you. I am hoping someone on the forum has some helpful information and/or suggestions (and I see OH has already offered some good info). I hope you can find a treatment that works for you.
OH, Magnum, this is terrible. And you have tried so hard and pushed so hard to make things available to you so you would not reach this stage. Of course, there is no telling if you would have had success earlier in your liver disease either but I sure wish the drug companies would have been more cooperative. It would be wonderful if you could get into one of these trials without interferon or a PI. If not, I hope it is possible to find a living donor.
You know, ejoli from this board did Victrelis in a trial and although she did SVR, her cirrhosis decompensated at the end of treatment and she is left with ongoing encephalopathy. I remember others whose livers were worse off after tx and it all seems to depend on the stage going in. I am at a loss how hepatologists can say your meld score should be lower than it is. Is it possible that some of your lab scores have been bolstered by supplements and other things you have been doing to sustain liver health?
My heart goes out to you. I know somehow you will make this work.
"I was told by their Hepatologist that I am sicker than the MELD score suggests."
Kathy, I think what Magnum was saying was while the MELD score accurate as far as the amount of time someone has to live, certain patient feel more ill than then others with the same MELD score number.
Magnum has had a number of months of very bad ascites for which he had to have repeated parenthesis. And his loss of weight and general weakness is not what is commonly seen in a patient with such a low MELD score.
The great thing is that Magnum is a fighter and he doesn't give up. So despite the many issues he has had, he has managed to hook up with Northwestern knowing that he is in their system and should he need it, he can count on them if and when he gets more ill.
I also found it advantages for myself 5 years ago when I was first diagnosed with cirrhosis to get hooked up with UCSF transplant center. It has a lot to do with all the friends relationships I have build over the years. It definitely helped me to be picked and screened first here at my transplant center. My doctor has help me in so many ways and I have many people at UCSF pulling for me, which is wonderful.
Over the years I have met other pre-transplant patients with MELD scores that never went up yet I could see then getting hepatic encephalopathy and ascites more and more. So I understand Magnum predicament. I am in the same boat with my liver disease. 2 years ago I had MELD score of 18 and 19 now before I started hep C treatment my MELD is only 11. It has been coming down over the last 2 years, yet my encephalopathy is way worse and general feeling of illness is worse. I am lucky to have gotten liver cancer as I never would have gotten a transplant by blood MELD score numbers alone. With my cancer exception points I have a MELD of 30. Still low here in Northern Cali but getting close to showing up on backup lists.
Magnum did every thing he could to beat the hepatitis. Unfortunately the treatment's powerful drugs impacted his fragile liver and made his liver disease worse. All cirrhotics should realize this is a risk we all take when we treat with interferon based HCV treatment. Although it doesn't happen often, estimates are around 10% of patients, it is a possibility.
Luckily Magnum knows how to regroup from such a setback and is now moving forward with managing his cirrhosis and doing all that he can to have a good prognosis. Magnum has also helped me with some issues even though he has a lot to deal with.
"Attitude is a little thing that makes a big difference." Winston Churchill
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~
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.
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.
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...
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!
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;
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.
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.
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...
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.
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.
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.
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!
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.......
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