Aa
Pre TP new drug
saw hep today and he said that as soon as I was approved on the tp list he wanted to start me on a new combo that has interferon and another drug that they give you up to tp. they have found that once tp is complete the hvc is also svr. does anyone have any info on this. I am getting ready to email followup email and would like to approach with some intelligent questions. didn't get drug name because he had so many interns following him today. when that happens I will follow up with an email with direct questions. just thought maybe some one else had heard about it.
its not the new wonder pill....I asked him about that and he said conclusions on it with cirrhosis patients prior to tp was still out but he was looking in to it. But this other option has opened up in research and they are finding a HIGH
success rate with it.
its not the new wonder pill....I asked him about that and he said conclusions on it with cirrhosis patients prior to tp was still out but he was looking in to it. But this other option has opened up in research and they are finding a HIGH
success rate with it.
I really get your morbid humor and I like your doc.
I will be very interested in following your transplant trail, thanks for posting.
I will be very interested in following your transplant trail, thanks for posting.
oh yes meant decomp....my ipad thinks its smarter than me and sometimes auto corrects spelling and just doesn't recognize the word decompensated for some reason even though I keep saving it. ...and depending on how tired I am...Decomp is on my profile page and most of you who I post with know I am decamped.
Was approved for the 3 drug trial and the Gilead trial but hep said no...he was afraid they would cause severe harm or kill me. He knows I have a muscle reaction to interferon and severe temperatures and chills but this new option prior to tp or during (that is what I'm going to find out) is a calculated risk that he and the transplant team think is worth it avoid HCV in transplanted liver I guess.
Will have to wait until my tp coordinator gets caught back up from her vacation for a response to my email but hopefully she can be more specific. He did say he wouldn't approved until I am on the list. He wasn't to do tp within next 4 months. PERIOD. He is adamant about it. He is one of the top 10 heps in country and is very involved in new drug research and usually has resources available to him so I am just going to have to trust that the calculated risk and reactions are worth it to eliminate the HCV.... i.e. I am going to have to trust him and the transplant doctor to make that decision.
I am lucky he is one of my number one fans. He likes my positive attitude but at the same time he gets a bit irritated at me because altho I look healthy and feel good except for periods of fatigue....the reality of my situation belie the facts.
He has a dry sense of humor as I do and we get each other. When I asked him for a liver percentage and he said I had none then he explained there were levels: low, moderate, or high and I was moderate. I said is that like raw, medium and well done? He rolled his eyes at me. I mused out loud...I wonder what fava beans even look like.... He said stop it. I know the harder you try to be funny the more scared you are. Stop trying to make it better for everyone..
So I have to believe that he has my best interests at heart I just hate it when he has a slew of interns with him because they are on a mission to learn and you are in a small room with 6 - 7 people all starring at you. Lucky for them because they are learning from one of the best but I like it when it is just he and I and the tp coordinator.. See just him again in 4 wks.
Will let you know what I find out when I get some more info.
Was approved for the 3 drug trial and the Gilead trial but hep said no...he was afraid they would cause severe harm or kill me. He knows I have a muscle reaction to interferon and severe temperatures and chills but this new option prior to tp or during (that is what I'm going to find out) is a calculated risk that he and the transplant team think is worth it avoid HCV in transplanted liver I guess.
Will have to wait until my tp coordinator gets caught back up from her vacation for a response to my email but hopefully she can be more specific. He did say he wouldn't approved until I am on the list. He wasn't to do tp within next 4 months. PERIOD. He is adamant about it. He is one of the top 10 heps in country and is very involved in new drug research and usually has resources available to him so I am just going to have to trust that the calculated risk and reactions are worth it to eliminate the HCV.... i.e. I am going to have to trust him and the transplant doctor to make that decision.
I am lucky he is one of my number one fans. He likes my positive attitude but at the same time he gets a bit irritated at me because altho I look healthy and feel good except for periods of fatigue....the reality of my situation belie the facts.
He has a dry sense of humor as I do and we get each other. When I asked him for a liver percentage and he said I had none then he explained there were levels: low, moderate, or high and I was moderate. I said is that like raw, medium and well done? He rolled his eyes at me. I mused out loud...I wonder what fava beans even look like.... He said stop it. I know the harder you try to be funny the more scared you are. Stop trying to make it better for everyone..
So I have to believe that he has my best interests at heart I just hate it when he has a slew of interns with him because they are on a mission to learn and you are in a small room with 6 - 7 people all starring at you. Lucky for them because they are learning from one of the best but I like it when it is just he and I and the tp coordinator.. See just him again in 4 wks.
Will let you know what I find out when I get some more info.
Hi heart,
You mention above that you are stage 4 "compensated", but I believe you are stage 4 "decompensated". The reason that you are not able to do the currently approved treatments for Hep C is because you are "decompensated" and the currently approved treatments would be too hard on your liver and would likely cause your liver to fail. Your hepatologist may be talking about a new treatment that has been submitted for approval, or he may be talking about a trial drug combination. Let us know when you learn more. There are basically three stages or gradations of "decompensated" Cirrhosis, and you are in the middle stage of that. At the next stage, your liver would fail. Your hepatologist is looking at all options prior to transplant. Perhaps a trial drug combo or a combo that may be approved soon is under consideration to try to treat your Hep C before transplant, if not, when the time comes, he will transplant you and after you recover from your transplant you will be able to treat your Hep C with either currently approved treatments or soon to be approved treatments.
Advocate1955
You mention above that you are stage 4 "compensated", but I believe you are stage 4 "decompensated". The reason that you are not able to do the currently approved treatments for Hep C is because you are "decompensated" and the currently approved treatments would be too hard on your liver and would likely cause your liver to fail. Your hepatologist may be talking about a new treatment that has been submitted for approval, or he may be talking about a trial drug combination. Let us know when you learn more. There are basically three stages or gradations of "decompensated" Cirrhosis, and you are in the middle stage of that. At the next stage, your liver would fail. Your hepatologist is looking at all options prior to transplant. Perhaps a trial drug combo or a combo that may be approved soon is under consideration to try to treat your Hep C before transplant, if not, when the time comes, he will transplant you and after you recover from your transplant you will be able to treat your Hep C with either currently approved treatments or soon to be approved treatments.
Advocate1955
"moderate" was what he said when I asked him how much viability my liver still has. He said it has none. It's not functioning. I said that's crazy if that was true I would be sitting there. He sighed, probably because I was questioning in front of all of the students, and he said at this stage there were levels: high, moderate or low and he would classify me as moderate.
well we know I have stage 4 compensated. "moderate" whatever that means. Meld still holding low but he is determined that as soon I get approved to push this tp through with my age factor. Also stated I am basically so healthy in all other areas of my body that this would be for the best to do as soon as possible considering I have the needed strength to do well. And yes, they transplant at low melds.
I told him after he asked me how I had previously reacted on interferon as is part of the 2 drugs...if this was a good idea. He said it is something new they are doing prior to tp and immediately as part of the tp process. I will find out the other name of the other drug. I have always found this to be a concern that they aren't treating my HCV which has a high viral load while I am waiting.
I conclude with what you say above as fact. I am just overwhelmed when he brings in 5 or 6 other people into the room with him and they are throwing several things at me at once in a very short times...hate the clinics. My tp coordinator is on vacation until after Labor Day and I am emailing her so she can get me some more answers.
Will let you know after I hear back from her.
How are you doing my friend?
I told him after he asked me how I had previously reacted on interferon as is part of the 2 drugs...if this was a good idea. He said it is something new they are doing prior to tp and immediately as part of the tp process. I will find out the other name of the other drug. I have always found this to be a concern that they aren't treating my HCV which has a high viral load while I am waiting.
I conclude with what you say above as fact. I am just overwhelmed when he brings in 5 or 6 other people into the room with him and they are throwing several things at me at once in a very short times...hate the clinics. My tp coordinator is on vacation until after Labor Day and I am emailing her so she can get me some more answers.
Will let you know after I hear back from her.
How are you doing my friend?
COMMUNITY LEADER
As long as your cirrhosis is compensated and you are generally healthy there is no reason why you can treat your hepatitis C before transplant.
As far as what your doctor said, there seems to be some misunderstanding about how hepatitis C and transplant work.
There is no hep C transplant drug. There is only the same hep C treatments as everyone else takes.
Are you really only months from transplant? Do they transplant at very low MELD score at your center? Also if transplant is only months away so you don't have to treat for the full duration of treatment, you only need to be undetectable for a few months before transplant and be undetectable when you have your transplant to have a good chance of not infecting your donor liver and being hep C free. There is no guarantee. If you do have any hep C when you get a transplant your new liver will be infected by the virus. That is why many TP patients choose to receive a donor liver that is already infected with hep C as it will get you a transplant sooner and the result will be a hep C infected liver anyways.
There are many new combinations of drugs in trials that work much better than old treat for cirrhotics so until you find out what the therapy is it is impossible to speculate. If the treatment contains interferon you can expect lots of complications unfortunately depending on how advanced your cirrhosis is. Low platelets, anemia, low neutrophils etc.Hopefully the treatment duration well be short so you would have a better chance of successfully completing treatment before or up until transplant.
Good luck.
Hector
As far as what your doctor said, there seems to be some misunderstanding about how hepatitis C and transplant work.
There is no hep C transplant drug. There is only the same hep C treatments as everyone else takes.
Are you really only months from transplant? Do they transplant at very low MELD score at your center? Also if transplant is only months away so you don't have to treat for the full duration of treatment, you only need to be undetectable for a few months before transplant and be undetectable when you have your transplant to have a good chance of not infecting your donor liver and being hep C free. There is no guarantee. If you do have any hep C when you get a transplant your new liver will be infected by the virus. That is why many TP patients choose to receive a donor liver that is already infected with hep C as it will get you a transplant sooner and the result will be a hep C infected liver anyways.
There are many new combinations of drugs in trials that work much better than old treat for cirrhotics so until you find out what the therapy is it is impossible to speculate. If the treatment contains interferon you can expect lots of complications unfortunately depending on how advanced your cirrhosis is. Low platelets, anemia, low neutrophils etc.Hopefully the treatment duration well be short so you would have a better chance of successfully completing treatment before or up until transplant.
Good luck.
Hector
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