Aa
Back from screening
Well, I was there for 3 hours went over questions, talked allot about the study, the people were super nice, they are an established study center for HIV and recently HCV they are happy about getting this study and are asking for more spaces. There has been a change to the 3rd arm. if after 12 wks there is a poor response the 3rd arm will be revealed and there will be an offer to switch to study drug w/ SOC and start over. That sounded pretty good
I go back the end of January if all the labs are good, and start, I also consented to a sub study w/ more detailed follow up.
these are some things I found out
random stop at 16 or 48 wks for arm 1,
rapid response stop at 24 for arm 2
stopping criteria 2 log drop by 12 or stop
1 log increase between 4 and 24 / stop
und then rebound / stop
detected at wk. 24 / stop
all medical that is directly related to drugs will be taken care of
recommended NSAID are ibuprofen, then Tylenol
I'm tired cuz when I came home my roof is leaking and that is a long story, but we have flat roofs here and they are not nice. $$
later ,
Mary4now
I go back the end of January if all the labs are good, and start, I also consented to a sub study w/ more detailed follow up.
these are some things I found out
random stop at 16 or 48 wks for arm 1,
rapid response stop at 24 for arm 2
stopping criteria 2 log drop by 12 or stop
1 log increase between 4 and 24 / stop
und then rebound / stop
detected at wk. 24 / stop
all medical that is directly related to drugs will be taken care of
recommended NSAID are ibuprofen, then Tylenol
I'm tired cuz when I came home my roof is leaking and that is a long story, but we have flat roofs here and they are not nice. $$
later ,
Mary4now
Sorry, but if you google tylenol and sudden liver failure you will see that it's not only those with advanced liver disease who are at risk with taking recommended doses of tylenol. There isn't anything that isn't toxic to the liver to some degree including house dust. That said, to each his own, and you certainly have the right to make your own best choice.
the following excerpt is from:
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Acetominophen.pdf
"But some people are more susceptible to acetaminophen toxicity and can experience liver damage even at the recommended dose. A study by the U.S. Food and Drug Administration (FDA) showed that about 20% of people with acetaminophen-related liver toxicity had taken less than the recommended daily amount."
We all "pick our poisons." Having seen and tx'd a number of tylenol overdoses (mostly intentional but not all), this just wouldn't be my choice.
the following excerpt is from:
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Acetominophen.pdf
"But some people are more susceptible to acetaminophen toxicity and can experience liver damage even at the recommended dose. A study by the U.S. Food and Drug Administration (FDA) showed that about 20% of people with acetaminophen-related liver toxicity had taken less than the recommended daily amount."
We all "pick our poisons." Having seen and tx'd a number of tylenol overdoses (mostly intentional but not all), this just wouldn't be my choice.
Tylenol/Acetaminophen (taken within recommended doseages) is the safest pain killer medicine to take as far as impact on the liver. NSAIDs are toxic to the liver.
This is not of concern to most HCV patients, only patients with advanced liver disease who need to avoid injuring their liver any further. Patients with cirrhosis of the liver are advised to only take Tylenol/Acetaminophen for pain relief. Not NSAIDs.
hectorsf
This is not of concern to most HCV patients, only patients with advanced liver disease who need to avoid injuring their liver any further. Patients with cirrhosis of the liver are advised to only take Tylenol/Acetaminophen for pain relief. Not NSAIDs.
hectorsf
Mary, that's a valuable bartering skill you have there!!
I was nervous and excited about my trial also - you make the best decision you can with what you know and the rest will be what it will be!! Hoping good things for you, Mary.
Trish
I was nervous and excited about my trial also - you make the best decision you can with what you know and the rest will be what it will be!! Hoping good things for you, Mary.
Trish
I now have 2 guys on my roof sweeping off the melted snow,,,,, this one guy who has a plumbing, heating, & cooling business is owed some value by a roofing company, so he is going to have them do the roof ( oh gawd, with these flat roofs I just dont know what that means, ) so we shall see,
I will pay him something (to be revealed ) and probably help work on his back that is really bothering him.
I will go through my notes and write more about what I was told at the center,
I'm a bit nervous about the whole thing, but whats a girl to do?
this is an opportunity
thank you for your time and your feedback and your invaluable knowledge and best of all support
love,
Mary
I will pay him something (to be revealed ) and probably help work on his back that is really bothering him.
I will go through my notes and write more about what I was told at the center,
I'm a bit nervous about the whole thing, but whats a girl to do?
this is an opportunity
thank you for your time and your feedback and your invaluable knowledge and best of all support
love,
Mary
Mary,
That's an interesting change to the third arm. Did they specify what qualifies as "poor response"?
"random stop at 16 or 48 wks for arm 1,"
Again - did they give any indication on criteria or simply some will be stopped at 16 weeks and some at 48 weeks? Is that the approach they're taking, such that your treatment could be stopped at 16 weeks? Will they stop at 16 if RVR or something like that?
Curious and interesting.
I'm sorry about your roof. I had a front porch with a flat roof once, very little $$ also and it started leaking badly. I went to the Home Depot store here (what are they, Loewen's or something in the U.S.?) and bought myself some rolled roofing and a bucket of tar. Rolled out the roofing, tarred it down - not pretty but nobody sees the roof!! Didn't need to replace the structure underneath, not sure if you will. Just thought I'd share that with you.
That's an interesting change to the third arm. Did they specify what qualifies as "poor response"?
"random stop at 16 or 48 wks for arm 1,"
Again - did they give any indication on criteria or simply some will be stopped at 16 weeks and some at 48 weeks? Is that the approach they're taking, such that your treatment could be stopped at 16 weeks? Will they stop at 16 if RVR or something like that?
Curious and interesting.
I'm sorry about your roof. I had a front porch with a flat roof once, very little $$ also and it started leaking badly. I went to the Home Depot store here (what are they, Loewen's or something in the U.S.?) and bought myself some rolled roofing and a bucket of tar. Rolled out the roofing, tarred it down - not pretty but nobody sees the roof!! Didn't need to replace the structure underneath, not sure if you will. Just thought I'd share that with you.
Glad to hear everything went well,all except the roof that is!
Sounds like you will be on your way to tx. shortly.My doc said tylenol if needed.
WILL
Sounds like you will be on your way to tx. shortly.My doc said tylenol if needed.
WILL
Your screening visit sounds like it went very well. Sorry 'bout the roof though - I hope some sort of less expensive patch is available.
Not entirely my own opinion but based on reading about how Tylenol acts in the liver I'd absolutely avoid using it. I know others might argue this (including many medical folks) but it wipes out glutathione which is the most critical antioxidant and detoxifier made by the body. To me it's not worth it the risk. Instead, when I need to I risk my stomach lining by taking Motrin.
Not entirely my own opinion but based on reading about how Tylenol acts in the liver I'd absolutely avoid using it. I know others might argue this (including many medical folks) but it wipes out glutathione which is the most critical antioxidant and detoxifier made by the body. To me it's not worth it the risk. Instead, when I need to I risk my stomach lining by taking Motrin.
Well that's great and it sounds like you found a clinical trial site to help you out. I personally can not think of a better place to tx than in a clinical trial. They stay on top of things and take really good care of you for obvious reasons. good for you, keep us posted!! BTW, what trial drug?
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