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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
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
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.
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.
Best of luck and please do keep us informed.
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.
Best of luck and please do keep us informed.
Sorry to hear things are worse but I am curious why your doctor put you at risk by not following treatment guidelines? They cleary state if one is not under 100 at week 12 treatment should stop.
so sorry to hear about your health. i am sending you hugs and some prayers. best of luck to you and please keep us posted! we care...belle
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.
Kathy
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.
Kathy
Glad to see you are able to post. So its working now. Do you know what the problem was in posting?
Cheers!
Hector
Cheers!
Hector
"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
Cheers!
Hector
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
Cheers!
Hector
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~
You are an inspiration, and a strong fighter~
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 .
I'm sorry to hear that things aren't going well for you.
I will keep you in my mind and heart.
Mike
I will keep you in my mind and heart.
Mike
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
I agree with Kathy, I think... think in some people TX can accelerate
further damage and illness. I'm so sorry!!
Sending hugs
Elaine
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
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
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:)
He told me I was a transplant survivor~ and he's right.
I am and you will be too:)
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
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
I think Magnum is getting his transplant in Chicago. You gotta do what ya gotta do and ya gotta go where ya gotta go.
So sorry to hear of your difficulties, I had no idea. Good luck buddy and take care of yourself.
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
Advocate1955
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
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
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)
Comeagain (007)
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
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
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
blessings
eric
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