Aa
Dr. Appt.
Hi all
Well we had my husbands Dr. appt. yesterday and I went in fully armed with lots of questions...they were really good about it. So frustrated after waiting 2 hrs. to be seen, but I remained fairly calm and was able to get some answers. As you know he relapsed after being UND since week 12. I did ask about the initial liver biopsy and they said pretty much what you had said Bill, he was going to treat anyway. They are trying to get him in on a clinical trial called Lambda, we should be hearing from them this week. He will most likely have to have a biopsy to participate in the trial. Part of me wants to google the trial but another part is stopping me...As with most of the info on the internet it needs to be decoded and I can't even process it right now. If he doesn't get in this trial the other course that they have suggested is daily infergen, which is a different kind of interferon and is used in conjunction with the current peg/riba treatment. Side effects can be worse...scary. As I posted earlier my husband is in the mindset that he just wants the virus out of his body and I can understand, but these treatments are scary.
Because we are in a teaching hospital we are first seen by a dr. working under the "Big Guy." Then after we are shuffled into a different room and we talk to him. My husband expressed that he wants to be more aggressive this time and the "Big Guy" belted out the different plans previously mentioned, afterwards the dr. who examined him first took us back into his room and shared his thoughts. He didn't disagree with the course of action mentioned by the main dr. but felt that the side effects of infergen are very harsh and that we should weigh the pros and cons, because long term effects of interferon have not been documented. Also he was very positive regarding the teleprivar, (He can't get in on that study right now) We are just taking it one day at a time because if we project, we get anxious. If anyone has any factual info regarding Lambda in laymens terms I would appreciate it. Thanks
Well we had my husbands Dr. appt. yesterday and I went in fully armed with lots of questions...they were really good about it. So frustrated after waiting 2 hrs. to be seen, but I remained fairly calm and was able to get some answers. As you know he relapsed after being UND since week 12. I did ask about the initial liver biopsy and they said pretty much what you had said Bill, he was going to treat anyway. They are trying to get him in on a clinical trial called Lambda, we should be hearing from them this week. He will most likely have to have a biopsy to participate in the trial. Part of me wants to google the trial but another part is stopping me...As with most of the info on the internet it needs to be decoded and I can't even process it right now. If he doesn't get in this trial the other course that they have suggested is daily infergen, which is a different kind of interferon and is used in conjunction with the current peg/riba treatment. Side effects can be worse...scary. As I posted earlier my husband is in the mindset that he just wants the virus out of his body and I can understand, but these treatments are scary.
Because we are in a teaching hospital we are first seen by a dr. working under the "Big Guy." Then after we are shuffled into a different room and we talk to him. My husband expressed that he wants to be more aggressive this time and the "Big Guy" belted out the different plans previously mentioned, afterwards the dr. who examined him first took us back into his room and shared his thoughts. He didn't disagree with the course of action mentioned by the main dr. but felt that the side effects of infergen are very harsh and that we should weigh the pros and cons, because long term effects of interferon have not been documented. Also he was very positive regarding the teleprivar, (He can't get in on that study right now) We are just taking it one day at a time because if we project, we get anxious. If anyone has any factual info regarding Lambda in laymens terms I would appreciate it. Thanks
In reference to the biopsy which I asked about yesterday, they said the reason it was not ordered first and foremost is 1, because he (my husband) wanted to go ahead with treatment regardless of how little or how much damage, and 2, because his ultra sound came back normal and his enzymes, though elevated were not thru the roof, he is not showing any signs of cirrhosis, or decompensation. His ALT's this time were 93, which is nearly twice what they should be so a biopsy was discussed yesterday. It is not the Drs. who are being so urgent about treatment...it is my husband. Right now we are waiting to hear from the University about the Lambda trial and that is what he (hubby) wants to go ahead with at this time, no talking him out of it. Most likely one of the pre requisites for this trial will be a liver biopsy to make sure he is a prime candidate for the study. If he doesn't get approved for the study then we will request a biopsy (we do have insurance) and depending on that we will discuss our next move. Until then he only wants to focus on the clinical trial and not on what happens next...not easy to do but is the only way to get through the day.
Jamie – Thanks for posting. I don't understand this reluctance to give your husband a liver biopsy and determine the extent of damage. I forget – does he show signs of cirrhosis? That is one reason you don't biopsy. But short of that you do. If he has insurance, then what's the problem?
To me, the biopsy would be critical in making a decision as to what to do next. If your husbands current level of scarring is slight or moderate, then it really makes sense to wait until the new treatments are approved. I don't know why the doctors feel this sense of urgency about treating him right now. Perhaps there is something they are looking at that I'm unaware of.
As far as medical trials go, I think it's important to shop around. Different research facilities have access to different trials. You'd want to find the best for him.
To me, the biopsy would be critical in making a decision as to what to do next. If your husbands current level of scarring is slight or moderate, then it really makes sense to wait until the new treatments are approved. I don't know why the doctors feel this sense of urgency about treating him right now. Perhaps there is something they are looking at that I'm unaware of.
As far as medical trials go, I think it's important to shop around. Different research facilities have access to different trials. You'd want to find the best for him.
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