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