Re: liver doc today - ny

November 30, 2010

nyHow sure were you that the lady you were seeing at this clinic was actually a liver specialist?? While doing my clinical, the young man that met with me for every appointment was a clinician and not a Dr. The Gastro went over any of my blood tests, Ultra Sounds and eventually recommended CT Scans. I probably saw him perhaps 4 times during the whole trial.Now that I am starting another follow-up study, I know that as a rule it would only be the clinician that I would see. However, because it looks like the cancer may be back, the Gastro and the surgeon will become very involved as well.Gloria

, I agree with Teri.

- You were responding to the meds.

- You would have shown an allergic reaction almost immediately to the meds.

- I also am not impressed with these doctors, because they refuse to answer your questions, and it seems that they are misleading you about some things.

Also because they didnt pay enough attention to you while you were on TX, thus you ended up being pulled off of TX, with some pretty serious health issues.

- And I agree that you need an aggressive Heptologist to re-treat you - if - you can be re-treated....and it is my opinion that you can.

BUT

You may still be undetectable.

I really really really hope so, because youve gone through enough already.

The proceedure that they want to do is called an ENDOSCOPY.

http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=endoscopy & type=

This is a tube, like a flexable telescope that they insert, and have a look-see.

Seeing as they dont seem too concerned about your health, do you really feel comfortable with them doing more?

I wont advise you on this, but if this proceedure needs to be done, I think I would allow my new doctors to order it, and do it.

Im glad that you went in and got new labs.

You did good.

Now you will be able to see where you stand.

You might also get new labs at 6 months, and see if you are still undetectable.

You may be SVR - CURED.

love

don in ks

Hi,

I forgot to say went to the liver doc today, did not turn out good. they took 11 tubes of blood, all doc wanted was data, when I asked about re treatment I was told that I can't re treat as my body can't handle the drugs. I then asked why did I handle it for 4 months (did have my gall bladder become inflamed), then everything fell apart? The treatment was rough for me, and the doctor said my case is very rare, and now after the treatment is over, which I think is 3 weeks or so that I should have no pain or problems at all, but I have so many. I did give her a piece of my mind, not that she cared but it was good for me to get it off my chest.

She now wants me to get a scope to look inside the GI tract for the stomach feeling it is being ripped apart, I forgot what it is called something with a "e"

I can't believe this! Teri said once if you have a bad reaction it happens right away, not in months. I then asked well if I can't treat in your opinion what are my options, was told we can talk about that next time, but she said that last time.

The only reason why I went is for the prc test. I was undetectable for the last one in October, and so I will still be undetectable in my mind! You have to think positive Until I see a test saying that I have a positive viral load (not sure what it is called when the virus comes back), I am cured!

The treatment was so hard, and the after treatment is really hard, but I really believe that the treatment is good, and better options are coming soon.

I took some oxycodene, really strong pills, yikes! The bottle says 1 pill every 4 hours, I think it is a mis-print as I feel stoned, but I am in no pain right now feel numb.

this message is suppose to be positive, and I hope it is.

Tonight my writing might be out there, but thanks so for listening,

Big Hugs to everybody,

Love ny

December 1, 2010

Hi,actually I am not sure, I thought she was a hepatoligst, but her card she gave me says physician assistance. I have met the main doctor running the trial once in the beginning, but I got the impression that he does not treat patients, they called him the director, which to me sounds like he runs things, not really sure what it all means. I never met with him, and never saw him at the center after that day.I always assumed that the doctor I see goes over everything with this director, but I am really never told anything so i am guessing here.Sounds like where you are going they keep you informed, and knowing that the main Gastro will be looking over everything is good to know.nyFrom: Gloria <gadamscan@...> Sent: Tue, November 30, 2010 7:13:46 PMSubject: Re: [ ] liver doc today - ny

nyHow sure were you that the lady you were seeing at this clinic was actually a liver specialist?? While doing my clinical, the young man that met with me for every appointment was a clinician and not a Dr. The Gastro went over any of my blood tests, Ultra Sounds and eventually recommended CT Scans. I probably saw him perhaps 4 times during the whole trial.Now that I am starting another follow-up study, I know that as a rule it would only be the clinician that I would see. However, because it looks like the cancer may be back, the Gastro and the surgeon will become very involved as well.Gloria

, I agree with Teri.

- You were responding to the meds.

- You would have shown an allergic reaction almost immediately to the meds.

- I also am not impressed with these doctors, because they refuse to answer your questions, and it seems that they are misleading you about some things.

Also because they didnt pay enough attention to you while you were on TX, thus you ended up being pulled off of TX, with some pretty serious health issues.

- And I agree that you need an aggressive Heptologist to re-treat you - if - you can be re-treated....and it is my opinion that you can.

BUT

You may still be undetectable.

I really really really hope so, because youve gone through enough already.

The proceedure that they want to do is called an ENDOSCOPY.

http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=endoscopy & type=

This is a tube, like a flexable telescope that they insert, and have a look-see.

Seeing as they dont seem too concerned about your health, do you really feel comfortable with them doing more?

I wont advise you on this, but if this proceedure needs to be done, I think I would allow my new doctors to order it, and do it.

Im glad that you went in and got new labs.

You did good.

Now you will be able to see where you stand.

You might also get new labs at 6 months, and see if you are still undetectable.

You may be SVR - CURED.

love

don in ks

Hi,

I forgot to say went to the liver doc today, did not turn out good. they took 11 tubes of blood, all doc wanted was data, when I asked about re treatment I was told that I can't re treat as my body can't handle the drugs. I then asked why did I handle it for 4 months (did have my gall bladder become inflamed), then everything fell apart? The treatment was rough for me, and the doctor said my case is very rare, and now after the treatment is over, which I think is 3 weeks or so that I should have no pain or problems at all, but I have so many. I did give her a piece of my mind, not that she cared but it was good for me to get it off my chest.

She now wants me to get a scope to look inside the GI tract for the stomach feeling it is being ripped apart, I forgot what it is called something with a "e"

I can't believe this! Teri said once if you have a bad reaction it happens right away, not in months. I then asked well if I can't treat in your opinion what are my options, was told we can talk about that next time, but she said that last time.

The only reason why I went is for the prc test. I was undetectable for the last one in October, and so I will still be undetectable in my mind! You have to think positive Until I see a test saying that I have a positive viral load (not sure what it is called when the virus comes back), I am cured!

The treatment was so hard, and the after treatment is really hard, but I really believe that the treatment is good, and better options are coming soon.

I took some oxycodene, really strong pills, yikes! The bottle says 1 pill every 4 hours, I think it is a mis-print as I feel stoned, but I am in no pain right now feel numb.

this message is suppose to be positive, and I hope it is.

Tonight my writing might be out there, but thanks so for listening,

Big Hugs to everybody,

Love ny

December 1, 2010

Hi Don,I have never been more un-impressed with doctors & a hospital. I liek Queens much better even when I go there to the ER and ask the nurses questions they tell me the answer or find out. I might not understand or remember, but I can't complain they told tell you things. it is not a perfect hospital, but considering I think pretty good for a major hospital.I looked at ENDOSCOPY, I don't like the way this looks :(Actually that is the thing about this place, and why my insurance ran out, they don't do any of this stuff there, as this would need to be done elsewhere, and in my case at Queen's hospital where the insurance is at. It comes out out of my pocket, nothing is covered because you are in the trial.I might be way off on this, but I thought or should I say that if you are on a clinical trial they should be required to take care off and pay for anything that happens as a result of the treatment! I can deal with we don't do that procedure here, but go to this doctor, and you will never see a bill you are covered through the clinical trial. After all the people you do clinical

trials are helping the doctors & drug companies too. I have been told by too many people that I should be grateful as I got the doctors, blood tests and Hep C drugs for free, but I think that is the case with all clinical trails? I would hope the others look after the patients a little better.yes I think that with the right doctor, you can come out of treatment with success, with the right doctor it makes it really hard! But the doctors don't take any responsibility and try to blame you. I was told treatment is too hard if you live alone, but I don't think I am the first one to do tx living on their own. I agree a good support team around you makes it much easier, but I broke my back once, and dealt with it on my own, the difference in San Diego I had

an amazing doctor and physical thepist who really cared.I really pray I stay SVR for 6 months, and will be free of the virus:)Thanks so much,Hugs, nyFrom: Christ <ludichrist2000@...> Sent: Tue, November 30, 2010 2:28:27 PMSubject: [ ] liver doc today - ny

, I agree with Teri.

- You were responding to the meds.

- You would have shown an allergic reaction almost immediately to the meds.

- I also am not impressed with these doctors, because they refuse to answer your questions, and it seems that they are misleading you about some things.

Also because they didnt pay enough attention to you while you were on TX, thus you ended up being pulled off of TX, with some pretty serious health issues.

- And I agree that you need an aggressive Heptologist to re-treat you - if - you can be re-treated....and it is my opinion that you can.

BUT

You may still be undetectable.

I really really really hope so, because youve gone through enough already.

The proceedure that they want to do is called an ENDOSCOPY.

http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=endoscopy & type=

This is a tube, like a flexable telescope that they insert, and have a look-see.

Seeing as they dont seem too concerned about your health, do you really feel comfortable with them doing more?

I wont advise you on this, but if this proceedure needs to be done, I think I would allow my new doctors to order it, and do it.

Im glad that you went in and got new labs.

You did good.

Now you will be able to see where you stand.

You might also get new labs at 6 months, and see if you are still undetectable.

You may be SVR - CURED.

love

don in ks

Hi,

I forgot to say went to the liver doc today, did not turn out good. they took 11 tubes of blood, all doc wanted was data, when I asked about re treatment I was told that I can't re treat as my body can't handle the drugs. I then asked why did I handle it for 4 months (did have my gall bladder become inflamed), then everything fell apart? The treatment was rough for me, and the doctor said my case is very rare, and now after the treatment is over, which I think is 3 weeks or so that I should have no pain or problems at all, but I have so many. I did give her a piece of my mind, not that she cared but it was good for me to get it off my chest.

She now wants me to get a scope to look inside the GI tract for the stomach feeling it is being ripped apart, I forgot what it is called something with a "e"

I can't believe this! Teri said once if you have a bad reaction it happens right away, not in months. I then asked well if I can't treat in your opinion what are my options, was told we can talk about that next time, but she said that last time.

The only reason why I went is for the prc test. I was undetectable for the last one in October, and so I will still be undetectable in my mind! You have to think positive Until I see a test saying that I have a positive viral load (not sure what it is called when the virus comes back), I am cured!

The treatment was so hard, and the after treatment is really hard, but I really believe that the treatment is good, and better options are coming soon.

I took some oxycodene, really strong pills, yikes! The bottle says 1 pill every 4 hours, I think it is a mis-print as I feel stoned, but I am in no pain right now feel numb.

this message is suppose to be positive, and I hope it is.

Tonight my writing might be out there, but thanks so for listening,

Big Hugs to everybody,

Love ny

December 1, 2010

Ah she's not a real doctor she just plays one on TV! That explains a lot. Physician Assistance. She is a doctor's helper. WOW. Note to self ny... going forward, always ask for credentials at the beginning. Then you know who's playing in the playground. WOW. She was a P.A. all along. Flabbergasted.

Hugs,TeriOn Wed, Dec 1, 2010 at 6:19 AM, Barrett <barrjohnm@...> wrote:

Hi,actually I am not sure, I thought she was a hepatoligst, but her card she gave me says physician assistance. I have met the main doctor running the trial once in the beginning, but I got the impression that he does not treat patients, they called him the director, which to me sounds like he runs things, not really sure what it all means. I never met with him, and never saw him at the center after that day.

I always assumed that the doctor I see goes over everything with this director, but I am really never told anything so i am guessing here.Sounds like where you are going they keep you informed, and knowing that the main Gastro will be looking over everything is good to know.

ny

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December 1, 2010

Absolutely, nyI can just about promise you that the woman that was looking after your care was definitely not any more than a clinician. If she were more, she certainly would have a right to feel proud and display the letters after her name.Also, at least I saw my Gastro several times during that year. Always, I felt very confidant in the care I was receiving and never were my questions not answered. I was looked after by a team of people, not just a clinician. I didn't find it necessary at any time to want to go over the head of my clinician; because, he would always go and track down one of the Gastro's even if mine was not on the premises.Gloria

Hi,actually I am not sure, I thought she was a hepatoligst, but her card she gave me says physician assistance. I have met the main doctor running the trial once in the beginning, but I got the impression that he does not treat patients, they called him the director, which to me sounds like he runs things, not really sure what it all means. I never met with him, and never saw him at the center after that day.I always assumed that the doctor I see goes over everything with this director, but I am really never told anything so i am guessing here.Sounds like where you are going they keep you informed, and knowing that the main Gastro will be looking over everything is good to know.nyFrom: Gloria <gadamscan@...> Sent: Tue, November 30, 2010 7:13:46 PMSubject: Re: [ ] liver doc today - ny

nyHow sure were you that the lady you were seeing at this clinic was actually a liver specialist?? While doing my clinical, the young man that met with me for every appointment was a clinician and not a Dr. The Gastro went over any of my blood tests, Ultra Sounds and eventually recommended CT Scans. I probably saw him perhaps 4 times during the whole trial.Now that I am starting another follow-up study, I know that as a rule it would only be the clinician that I would see. However, because it looks like the cancer may be back, the Gastro and the surgeon will become very involved as well.Gloria

, I agree with Teri.

- You were responding to the meds.

- You would have shown an allergic reaction almost immediately to the meds.

- I also am not impressed with these doctors, because they refuse to answer your questions, and it seems that they are misleading you about some things.

Also because they didnt pay enough attention to you while you were on TX, thus you ended up being pulled off of TX, with some pretty serious health issues.

- And I agree that you need an aggressive Heptologist to re-treat you - if - you can be re-treated....and it is my opinion that you can.

BUT

You may still be undetectable.

I really really really hope so, because youve gone through enough already.

The proceedure that they want to do is called an ENDOSCOPY.

http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=endoscopy & type=

This is a tube, like a flexable telescope that they insert, and have a look-see.

Seeing as they dont seem too concerned about your health, do you really feel comfortable with them doing more?

I wont advise you on this, but if this proceedure needs to be done, I think I would allow my new doctors to order it, and do it.

Im glad that you went in and got new labs.

You did good.

Now you will be able to see where you stand.

You might also get new labs at 6 months, and see if you are still undetectable.

You may be SVR - CURED.

love

don in ks

Hi,

I forgot to say went to the liver doc today, did not turn out good. they took 11 tubes of blood, all doc wanted was data, when I asked about re treatment I was told that I can't re treat as my body can't handle the drugs. I then asked why did I handle it for 4 months (did have my gall bladder become inflamed), then everything fell apart? The treatment was rough for me, and the doctor said my case is very rare, and now after the treatment is over, which I think is 3 weeks or so that I should have no pain or problems at all, but I have so many. I did give her a piece of my mind, not that she cared but it was good for me to get it off my chest.

She now wants me to get a scope to look inside the GI tract for the stomach feeling it is being ripped apart, I forgot what it is called something with a "e"

I can't believe this! Teri said once if you have a bad reaction it happens right away, not in months. I then asked well if I can't treat in your opinion what are my options, was told we can talk about that next time, but she said that last time.

The only reason why I went is for the prc test. I was undetectable for the last one in October, and so I will still be undetectable in my mind! You have to think positive Until I see a test saying that I have a positive viral load (not sure what it is called when the virus comes back), I am cured!

The treatment was so hard, and the after treatment is really hard, but I really believe that the treatment is good, and better options are coming soon.

I took some oxycodene, really strong pills, yikes! The bottle says 1 pill every 4 hours, I think it is a mis-print as I feel stoned, but I am in no pain right now feel numb.

this message is suppose to be positive, and I hope it is.

Tonight my writing might be out there, but thanks so for listening,

Big Hugs to everybody,

Love ny

December 1, 2010

nyI actually believe that it really is that clinic's fault you ended up sooo sick!! You were definitely not being monitored properly. I know for a fact that, if it was my clinic, I'd have been pulled from the trial long before all this happened. None of it was your fault and obviously was a reaction to the test drugs.Now, knowing that you were a guinea pig, should mean that because it broke your health, that both the clinic and the pharmaceutical should be required to fork over the costs to get you well again. Did you have to sign a small booklet of papers when you first began???If I were you, I'd make a whole lot of loud noises and even bring your Dad in on it. No body should

have to bear the costs for the clinic's failure to watch you close enough. Remember too that you were extremely ill on every shot and still they did nothing. What did they expect would happen, since every shot made you so sick.Gloria

Hi Don,I have never been more un-impressed with doctors & a hospital. I liek Queens much better even when I go there to the ER and ask the nurses questions they tell me the answer or find out. I might not understand or remember, but I can't complain they told tell you things. it is not a perfect hospital, but considering I think pretty good for a major hospital.I looked at ENDOSCOPY, I don't like the way this looks :(Actually that is the thing about this place, and why my insurance ran out, they don't do any of this stuff

there, as this would need to be done elsewhere, and in my case at Queen's hospital where the insurance is at. It comes out out of my pocket, nothing is covered because you are in the trial.I might be way off on this, but I thought or should I say that if you are on a clinical trial they should be required to take care off and pay for anything that happens as a result of the treatment! I can deal with we don't do that procedure here, but go to this doctor, and you will never see a bill you are covered through the clinical trial. After all the people you do clinical

trials are helping the doctors & drug companies too. I have been told by too many people that I should be grateful as I got the doctors, blood tests and Hep C drugs for free, but I think that is the case with all clinical trails? I would hope the others look after the patients a little better.yes I think that with the right doctor, you can come out of treatment with success, with the right doctor it makes it really hard! But the doctors don't take any responsibility and try to blame you. I was told treatment is too hard if you live alone, but I don't think I am the first one to do tx living on their own. I agree a good support team around you makes it much easier, but I broke my back once, and dealt with it on my own, the difference in San Diego I had

an amazing doctor and physical thepist who really cared.I really pray I stay SVR for 6 months, and will be free of the virus:)Thanks so much,Hugs, nyFrom: Christ <ludichrist2000@...>To:

Sent: Tue, November 30, 2010 2:28:27 PMSubject: [ ] liver doc today - ny

, I agree with Teri.

- You were responding to the meds.

- You would have shown an allergic reaction almost immediately to the meds.

- I also am not impressed with these doctors, because they refuse to answer your questions, and it seems that they are misleading you about some things.

Also because they didnt pay enough attention to you while you were on TX, thus you ended up being pulled off of TX, with some pretty serious health issues.

- And I agree that you need an aggressive Heptologist to re-treat you - if - you can be re-treated....and it is my opinion that you can.

BUT

You may still be undetectable.

I really really really hope so, because youve gone through enough already.

The proceedure that they want to do is called an ENDOSCOPY.

http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=endoscopy & type=

This is a tube, like a flexable telescope that they insert, and have a look-see.

Seeing as they dont seem too concerned about your health, do you really feel comfortable with them doing more?

I wont advise you on this, but if this proceedure needs to be done, I think I would allow my new doctors to order it, and do it.

Im glad that you went in and got new labs.

You did good.

Now you will be able to see where you stand.

You might also get new labs at 6 months, and see if you are still undetectable.

You may be SVR - CURED.

love

don in ks

Hi,

I forgot to say went to the liver doc today, did not turn out good. they took 11 tubes of blood, all doc wanted was data, when I asked about re treatment I was told that I can't re treat as my body can't handle the drugs. I then asked why did I handle it for 4 months (did have my gall bladder become inflamed), then everything fell apart? The treatment was rough for me, and the doctor said my case is very rare, and now after the treatment is over, which I think is 3 weeks or so that I should have no pain or problems at all, but I have so many. I did give her a piece of my mind, not that she cared but it was good for me to get it off my chest.

She now wants me to get a scope to look inside the GI tract for the stomach feeling it is being ripped apart, I forgot what it is called something with a "e"

I can't believe this! Teri said once if you have a bad reaction it happens right away, not in months. I then asked well if I can't treat in your opinion what are my options, was told we can talk about that next time, but she said that last time.

The only reason why I went is for the prc test. I was undetectable for the last one in October, and so I will still be undetectable in my mind! You have to think positive Until I see a test saying that I have a positive viral load (not sure what it is called when the virus comes back), I am cured!

The treatment was so hard, and the after treatment is really hard, but I really believe that the treatment is good, and better options are coming soon.

I took some oxycodene, really strong pills, yikes! The bottle says 1 pill every 4 hours, I think it is a mis-print as I feel stoned, but I am in no pain right now feel numb.

this message is suppose to be positive, and I hope it is.

Tonight my writing might be out there, but thanks so for listening,

Big Hugs to everybody,

Love ny

December 1, 2010

I totally agree with Gloria on this one. Somebody needs to take responsibility for what happened... period.Hugs,TeriOn Wed, Dec 1, 2010 at 7:19 PM, Gloria <gadamscan@...> wrote:

nyI actually believe that it really is that clinic's fault you ended up sooo sick!! You were definitely not being monitored properly. I know for a fact that, if it was my clinic, I'd have been pulled from the trial long before all this happened. None of it was your fault and obviously was a reaction to the test drugs.

Now, knowing that you were a guinea pig, should mean that because it broke your health, that both the clinic and the pharmaceutical should be required to fork over the costs to get you well again. Did you have to sign a small booklet of papers when you first began???

If I were you, I'd make a whole lot of loud noises and even bring your Dad in on it. No body should

have to bear the costs for the clinic's failure to watch you close enough. Remember too that you were extremely ill on every shot and still they did nothing. What did they expect would happen, since every shot made you so sick.

Gloria

December 2, 2010

I feel this way too, I try not to think about it, it brings me to tears.From: Theresa Gottlieb <theresagottlieb@...> Sent: Wed, December 1, 2010 3:46:16 PMSubject: Re: [ ] liver doc today - ny

I totally agree with Gloria on this one. Somebody needs to take responsibility for what happened... period.Hugs,TeriOn Wed, Dec 1, 2010 at 7:19 PM, Gloria <gadamscan@...> wrote:

nyI actually believe that it really is that clinic's fault you ended up sooo sick!! You were definitely not being monitored properly. I know for a fact that, if it was my clinic, I'd have been pulled from the trial long before all this happened. None of it was your fault and obviously was a reaction to the test drugs.

Now, knowing that you were a guinea pig, should mean that because it broke your health, that both the clinic and the pharmaceutical should be required to fork over the costs to get you well again. Did you have to sign a small booklet of papers when you first began???

If I were you, I'd make a whole lot of loud noises and even bring your Dad in on it. No body should

have to bear the costs for the clinic's failure to watch you close enough. Remember too that you were extremely ill on every shot and still they did nothing. What did they expect would happen, since every shot made you so sick.

Gloria

December 2, 2010

Hi Gloria,thank you so much!I feel that it was the doctors lack of support which is why I had so many problems. I think other places would not have let me get so far into the treatment with so many issues. Yes the first meeting, I felt like I was talking to lawyers, and

to sign a book of papers. They were desperate for being in the trial, there was so much pressure and no time to think, I had no idea what I was getting into.Sadly I am on my own with getting better, I have to find a way to pay myself. I talked to Dad about it, he calls them medical school dropouts. He thinks we should get a lawyer, was told it is un-ethical to get data after I was done with the trial.thanks,nyFrom: Gloria <gadamscan@...> Sent: Wed, December 1, 2010 3:19:09 PMSubject: Re: [ ] liver doc today - ny

nyI actually believe that it really is that clinic's fault you ended up sooo sick!! You were definitely not being monitored properly. I know for a fact that, if it was my clinic, I'd have been pulled from the trial long before all this happened. None of it was your fault and obviously was a reaction to the test drugs.Now, knowing that you were a guinea pig, should mean that because it broke your health, that both the clinic and the pharmaceutical should be required to fork over the costs to get you well again. Did you have to sign a small booklet of papers when you first began???If I were you, I'd make a whole lot of loud noises and even bring your Dad in on it. No body should

have to bear the costs for the clinic's failure to watch you close enough. Remember too that you were extremely ill on every shot and still they did nothing. What did they expect would happen, since every shot made you so sick.Gloria

Hi Don,I have never been more un-impressed with doctors & a hospital. I liek Queens much better even when I go there to the ER and ask the nurses questions they tell me the answer or find out. I might not understand or remember, but I can't complain they told tell you things. it is not a perfect hospital, but considering I think pretty good for a major hospital.I looked at ENDOSCOPY, I don't like the way this looks :(Actually that is the thing about this place, and why my insurance ran out, they don't do any of this stuff

there, as this would need to be done elsewhere, and in my case at Queen's hospital where the insurance is at. It comes out out of my pocket, nothing is covered because you are in the trial.I might be way off on this, but I thought or should I say that if you are on a clinical trial they should be required to take care off and pay for anything that happens as a result of the treatment! I can deal with we don't do that procedure here, but go to this doctor, and you will never see a bill you are covered through the clinical trial. After all the people you do clinical

trials are helping the doctors & drug companies too. I have been told by too many people that I should be grateful as I got the doctors, blood tests and Hep C drugs for free, but I think that is the case with all clinical trails? I would hope the others look after the patients a little better.yes I think that with the right doctor, you can come out of treatment with success, with the right doctor it makes it really hard! But the doctors don't take any responsibility and try to blame you. I was told treatment is too hard if you live alone, but I don't think I am the first one to do tx living on their own. I agree a good support team around you makes it much easier, but I broke my back once, and dealt with it on my own, the difference in San Diego I had

an amazing doctor and physical thepist who really cared.I really pray I stay SVR for 6 months, and will be free of the virus:)Thanks so much,Hugs, nyFrom: Christ <ludichrist2000@...>To:

Sent: Tue, November 30, 2010 2:28:27 PMSubject: [ ] liver doc today - ny

, I agree with Teri.

- You were responding to the meds.

- You would have shown an allergic reaction almost immediately to the meds.

- I also am not impressed with these doctors, because they refuse to answer your questions, and it seems that they are misleading you about some things.

Also because they didnt pay enough attention to you while you were on TX, thus you ended up being pulled off of TX, with some pretty serious health issues.

- And I agree that you need an aggressive Heptologist to re-treat you - if - you can be re-treated....and it is my opinion that you can.

BUT

You may still be undetectable.

I really really really hope so, because youve gone through enough already.

The proceedure that they want to do is called an ENDOSCOPY.

http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=endoscopy & type=

This is a tube, like a flexable telescope that they insert, and have a look-see.

Seeing as they dont seem too concerned about your health, do you really feel comfortable with them doing more?

I wont advise you on this, but if this proceedure needs to be done, I think I would allow my new doctors to order it, and do it.

Im glad that you went in and got new labs.

You did good.

Now you will be able to see where you stand.

You might also get new labs at 6 months, and see if you are still undetectable.

You may be SVR - CURED.

love

don in ks

Hi,

I forgot to say went to the liver doc today, did not turn out good. they took 11 tubes of blood, all doc wanted was data, when I asked about re treatment I was told that I can't re treat as my body can't handle the drugs. I then asked why did I handle it for 4 months (did have my gall bladder become inflamed), then everything fell apart? The treatment was rough for me, and the doctor said my case is very rare, and now after the treatment is over, which I think is 3 weeks or so that I should have no pain or problems at all, but I have so many. I did give her a piece of my mind, not that she cared but it was good for me to get it off my chest.

She now wants me to get a scope to look inside the GI tract for the stomach feeling it is being ripped apart, I forgot what it is called something with a "e"

I can't believe this! Teri said once if you have a bad reaction it happens right away, not in months. I then asked well if I can't treat in your opinion what are my options, was told we can talk about that next time, but she said that last time.

The only reason why I went is for the prc test. I was undetectable for the last one in October, and so I will still be undetectable in my mind! You have to think positive Until I see a test saying that I have a positive viral load (not sure what it is called when the virus comes back), I am cured!

The treatment was so hard, and the after treatment is really hard, but I really believe that the treatment is good, and better options are coming soon.

I took some oxycodene, really strong pills, yikes! The bottle says 1 pill every 4 hours, I think it is a mis-print as I feel stoned, but I am in no pain right now feel numb.

this message is suppose to be positive, and I hope it is.

Tonight my writing might be out there, but thanks so for listening,

Big Hugs to everybody,

Love ny

December 2, 2010

Hi,i think you are right, most people are really into titles, they mean nothing to me, but with many it is important.sounds like you had a good team looking after you, and they assured that all your questions were answered, that is really great.nyFrom: Gloria <gadamscan@...> Sent: Wed,

December 1, 2010 10:24:31 AMSubject: Re: [ ] liver doc today - ny

Absolutely, nyI can just about promise you that the woman that was looking after your care was definitely not any more than a clinician. If she were more, she certainly would have a right to feel proud and display the letters after her name.Also, at least I saw my Gastro several times during that year. Always, I felt very confidant in the care I was receiving and never were my questions not answered. I was looked after by a team of people, not just a clinician. I didn't find it necessary at any time to want to go over the head of my clinician; because, he would always go and track down one of the Gastro's even if mine was not on the premises.Gloria

Hi,actually I am not sure, I thought she was a hepatoligst, but her card she gave me says physician assistance. I have met the main doctor running the trial once in the beginning, but I got the impression that he does not treat patients, they called him the director, which to me sounds like he runs things, not really sure what it all means. I never met with him, and never saw him at the center after that day.I always assumed that the doctor I see goes over everything with this director, but I am really never told anything so i am guessing here.Sounds like where you are going they keep you informed, and knowing that the main Gastro will be looking over everything is good to know.nyFrom: Gloria <gadamscan@...> Sent: Tue, November 30, 2010 7:13:46 PMSubject: Re: [ ] liver doc today - ny

nyHow sure were you that the lady you were seeing at this clinic was actually a liver specialist?? While doing my clinical, the young man that met with me for every appointment was a clinician and not a Dr. The Gastro went over any of my blood tests, Ultra Sounds and eventually recommended CT Scans. I probably saw him perhaps 4 times during the whole trial.Now that I am starting another follow-up study, I know that as a rule it would only be the clinician that I would see. However, because it looks like the cancer may be back, the Gastro and the surgeon will become very involved as well.Gloria

, I agree with Teri.

- You were responding to the meds.

- You would have shown an allergic reaction almost immediately to the meds.

- I also am not impressed with these doctors, because they refuse to answer your questions, and it seems that they are misleading you about some things.

Also because they didnt pay enough attention to you while you were on TX, thus you ended up being pulled off of TX, with some pretty serious health issues.

- And I agree that you need an aggressive Heptologist to re-treat you - if - you can be re-treated....and it is my opinion that you can.

BUT

You may still be undetectable.

I really really really hope so, because youve gone through enough already.

The proceedure that they want to do is called an ENDOSCOPY.

http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=endoscopy & type=

This is a tube, like a flexable telescope that they insert, and have a look-see.

Seeing as they dont seem too concerned about your health, do you really feel comfortable with them doing more?

I wont advise you on this, but if this proceedure needs to be done, I think I would allow my new doctors to order it, and do it.

Im glad that you went in and got new labs.

You did good.

Now you will be able to see where you stand.

You might also get new labs at 6 months, and see if you are still undetectable.

You may be SVR - CURED.

love

don in ks

Hi,

I forgot to say went to the liver doc today, did not turn out good. they took 11 tubes of blood, all doc wanted was data, when I asked about re treatment I was told that I can't re treat as my body can't handle the drugs. I then asked why did I handle it for 4 months (did have my gall bladder become inflamed), then everything fell apart? The treatment was rough for me, and the doctor said my case is very rare, and now after the treatment is over, which I think is 3 weeks or so that I should have no pain or problems at all, but I have so many. I did give her a piece of my mind, not that she cared but it was good for me to get it off my chest.

She now wants me to get a scope to look inside the GI tract for the stomach feeling it is being ripped apart, I forgot what it is called something with a "e"

I can't believe this! Teri said once if you have a bad reaction it happens right away, not in months. I then asked well if I can't treat in your opinion what are my options, was told we can talk about that next time, but she said that last time.

The only reason why I went is for the prc test. I was undetectable for the last one in October, and so I will still be undetectable in my mind! You have to think positive Until I see a test saying that I have a positive viral load (not sure what it is called when the virus comes back), I am cured!

The treatment was so hard, and the after treatment is really hard, but I really believe that the treatment is good, and better options are coming soon.

I took some oxycodene, really strong pills, yikes! The bottle says 1 pill every 4 hours, I think it is a mis-print as I feel stoned, but I am in no pain right now feel numb.

this message is suppose to be positive, and I hope it is.

Tonight my writing might be out there, but thanks so for listening,

Big Hugs to everybody,

Love ny

December 2, 2010

HI Teri,thanks!You are right I need to ask who people about their credentials are and not be preussured into things I am not comfrtable with.A Physician Assistance is a doctors assistant only, like a student helper who works for a professor, I have done that. This explains a lot, I was bitter before seeing this and looking on-line, but now I am just being pissed off!thanks so much,Hugs, nyFrom: Theresa Gottlieb <theresagottlieb@...>

< >Sent: Wed, December 1, 2010 7:23:32 AMSubject: Re: [ ] liver doc today - ny

Ah she's not a real doctor she just plays one on TV! That explains a lot. Physician Assistance. She is a doctor's helper. WOW. Note to self ny... going forward, always ask for credentials at the beginning. Then you know who's playing in the playground. WOW. She was a P.A. all along. Flabbergasted.

Hugs,TeriOn Wed, Dec 1, 2010 at 6:19 AM, Barrett <barrjohnm@...> wrote:

Hi,actually I am not sure, I thought she was a hepatoligst, but her card she gave me says physician assistance. I have met the main doctor running the trial once in the beginning, but I got the impression that he does not treat patients, they called him the director, which to me sounds like he runs things, not really sure what it all means. I never met with him, and never saw him at the center after that day.

I always assumed that the doctor I see goes over everything with this director, but I am really never told anything so i am guessing here.Sounds like where you are going they keep you informed, and knowing that the main Gastro will be looking over everything is good to know.

ny

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December 2, 2010

nyWhy is it un-ethical to get data after you were done??There is no reason that you can't be given copies of just about your entire file!!! Besides they weren't doing a blind study were they?? What was the 3rd drug? Far as I'm concerned you should call them and tell that you would like a copy of all the tests, period. If they try to blow you off, suggest that they can then talk with your lawyer.It is highly un-ethical to not give those reports to you!! How is another Dr. going to be able to deal correctly with the other health issues that happened as a result of this trial??In fact, I have to ask most of the folks here. How

do you keep a comprehensive medical file on yourself when you have to flip around to different Drs? I would think if that happens, one should carry there own medical file, so that the new Dr. can read it.Gloria