Clinical trial

[Guest guest]

I had three hip injections of Hyalagin or Synvisc under floroscopy

before I had my mini-hip replacement and found that it really helped

a lot, but not nearly enough to avoid surgery. My pain was reduced by

maybe 40%, but if I could do it over I would just have the surgery

since the Synvisc delayed my surgery by months as my doctor waited 12

weeks to see how I was responding. I finally found a better surgeon

at s Hopkins, but regretted losing the time. The injections were

no problem at all and side effect free, except the expense which was

close to $800. At least you will get it for free!

I would like to hear how you do.

> Has anyone heard of or been treated with Hyalgan? I was accepted

> yesterday for a clinical trial for hip injections. It has been

used

> successfully on knees. It was announced on television and I went to

> their website and called the number. They had a big response so

> there must be a lot of sore hips. I won't know until later whether

I

> get the real thing or not, but thought it would be worth a try. My

> right hip is bothering me now. I feel part of it is the strain put

> on it while using the walker for five weeks and putting so much

extra

> weight on it. It might get better on its own and then I won't know

> what helped it. Just hope something will. It doesn't cost anything

> and you receive $200 at the end of the trial. Glad of that as the

> hospital where it is is 32 miles one way and with the cost of gas,

> that will mount up. You have to stop all meds. That is no problem

> since I take only Vioxx and I had to quit it for a month and a half

> before, during and after surgery. They supply free Tylenol during

the

> trial. Hyalgan is supposed to be made from rooster's combs. Just

> hope it works. Only supposed to last a few months, though. You can

> take it over and over. Not supposed to be many side effects. None

> that ammount to much anyway. Will keep you posted. Let me know if

> any of you have used it.

[Guest guest]

-, is synvisc the same thing as Hyalgan? I won't be losing any

time even if it doesn't do any good as I am a long way from

replacement on that hip. I just had the other one done in May and

this one is not bothering me that much, but thought if I could stall

it off for awhile I would do it. I'm not ready for major surgery for

another year or two. I'll keep you posted. I'm not having the

injections until October. In

Joint Replacement , " imbluish " <ncstuart@c...>

wrote:

> I had three hip injections of Hyalagin or Synvisc under floroscopy

> before I had my mini-hip replacement and found that it really

helped

> a lot, but not nearly enough to avoid surgery. My pain was reduced

by

> maybe 40%, but if I could do it over I would just have the surgery

> since the Synvisc delayed my surgery by months as my doctor waited

12

> weeks to see how I was responding. I finally found a better surgeon

> at s Hopkins, but regretted losing the time. The injections

were

> no problem at all and side effect free, except the expense which

was

> close to $800. At least you will get it for free!

> I would like to hear how you do.

>

>

> > Has anyone heard of or been treated with Hyalgan? I was accepted

> > yesterday for a clinical trial for hip injections. It has been

> used

> > successfully on knees. It was announced on television and I went

to

> > their website and called the number. They had a big response so

> > there must be a lot of sore hips. I won't know until later

whether

> I

> > get the real thing or not, but thought it would be worth a try.

My

> > right hip is bothering me now. I feel part of it is the strain

put

> > on it while using the walker for five weeks and putting so much

> extra

> > weight on it. It might get better on its own and then I won't

know

> > what helped it. Just hope something will. It doesn't cost

anything

> > and you receive $200 at the end of the trial. Glad of that as

the

> > hospital where it is is 32 miles one way and with the cost of

gas,

> > that will mount up. You have to stop all meds. That is no

problem

> > since I take only Vioxx and I had to quit it for a month and a

half

> > before, during and after surgery. They supply free Tylenol during

> the

> > trial. Hyalgan is supposed to be made from rooster's combs. Just

> > hope it works. Only supposed to last a few months, though. You

can

> > take it over and over. Not supposed to be many side effects. None

> > that ammount to much anyway. Will keep you posted. Let me know

if

> > any of you have used it.

[Guest guest]

> > Has anyone heard of or been treated with Hyalgan? I was accepted

> > yesterday for a clinical trial for hip injections. It has been

> used

> > successfully on knees. It was announced on television and I went

to

> > their website and called the number. They had a big response so

> > there must be a lot of sore hips. I won't know until later

whether

> I

> > get the real thing or not, but thought it would be worth a try.

My

> > right hip is bothering me now. I feel part of it is the strain

put

> > on it while using the walker for five weeks and putting so much

> extra

> > weight on it. It might get better on its own and then I won't

know

> > what helped it. Just hope something will. It doesn't cost

anything

> > and you receive $200 at the end of the trial. Glad of that as

the

> > hospital where it is is 32 miles one way and with the cost of

gas,

> > that will mount up. You have to stop all meds. That is no

problem

> > since I take only Vioxx and I had to quit it for a month and a

half

> > before, during and after surgery. They supply free Tylenol during

> the

> > trial. Hyalgan is supposed to be made from rooster's combs. Just

> > hope it works. Only supposed to last a few months, though. You

can

> > take it over and over. Not supposed to be many side effects. None

> > that ammount to much anyway. Will keep you posted. Let me know

if

> > any of you have used it.

[Guest guest]

Dear Dr Chetna and Dr AnupamaProblems are many. There is a need

to find out the way out of it. The way may not be simple; may not be effective

instantaneously.

As pointed out ICMR would, in due

course may ‘standardize’ the functioning of Institutional Ethics Committee and

may undertake programs for training of the members etc.

If, I am not wrong each medical

has ethics committee. Other institutions may have such. Why not to make the

free availability of this article and like articles, including the articles

suggestive of the solution to the problems to the Deans of Medical colleges, Superintendents of the Hospitals attached to

Medical Colleges, Chairperson and secretary of Ethics committee.

Even the chairpersons/secretaries of the ethics committees may be brought under a ‘internet group’ so that they can communicate and interact with each other to share the specific

problem/s faced during the meetings. Solutions of certain problems may come out

of such communications. Useful suggestions on various aspects may be shared and

some useful conclusion can be arrived at.

At department of Medicine and Pharmacology should emphasize on the clinical research/drug trials in general and issues raised in this

or similar articles if any, in under-graduate

as well as post graduates curriculum. Special attention should be paid to

these aspects to post graduate training, research. Specific exercises raising

these points should be included in evaluation

of post graduates. This needs awareness about these issues in faculty

members.

To increase the awareness

circumference each medical may arrange the may arrange seminars/symposia /other

interactive sessions under Medical Educational

Units Or CME programs.

May I hope that good offices of Sandhya

Srinivasan, being She is

executive editor of the Indian Journal of Medical Ethics extend

possible help in establishing the above mentioned aspects?

May enthusiasts like

Dr ChetnaAhmedabad

Dr. Anupama

Jamnagar

Dr.Manoj Dudeja

Ludhiana

Dr Sreekanth Gattu

Chennai

Dr Chandru

Karnataka

Mr. Kishore ghiya

Rajkot

extend their help for the better

cause.

As I mention the issue is

pending; pending for a long time; it is brought on surface by

Sandhya Srinivasan and responded at by at least by few. To day the

figure of respondents may in single figure, who knows it will increase to many

figures tomorrow.

Let us be

hopeful; the awareness in the medical

personnel involved in trials is to be increased first, then to the media and then to the common man.

In between, let

the issue of ‘clinical -trial- research as commercial activity’ be

on debate. Let there is expert

opinions on this issue by economists, pharmaceutical companies, drug-regulating

authorities, and the finance department of states and the central government.

May I request Sandhya Srinivasan to raise such

debate in best possible she thinks, as she is rich in experience as Bombay-based journalist

specialising in public health and development issues?

From: Chetna

Desai <chetna99gmail (DOT) com>Subject: Fwd: clinical trialnetrumgroups (DOT) comDate: Tuesday, 25 August, 2009, 11:00 PM

HiA good article worth a note...chetnaPlease see following link how clinical trial conducted in india\

http://www.himalmag .com/Bodies- for-hire; -The-outsourcing -of-clinical- trials_nw3213. html

Looking for local information? Find it on Local http://in.local. /

-- Dr Chetna DesaiDepartment of PharmacologyB. J. Medical CollegeAhmedabad 380016Visit http://www.pharmaco logybjmc. org

http://pharmacbjmc. 110mb.comwww.poliofoundation .org

Love Cricket? Check out live scores, photos, video highlights and more. Click here.

[Guest guest]

Thank you RR

This link has been added to our groups link section...folder....CLINICAL TRIALS.

I would like to thank everyone who contributes info links on HCV and related topics.

Our links library is growing quite large thanks to all your efforts.

love

don in ks

From: bucaman@... <bucaman@...>Subject: [ ] Clinical Trial Date: Saturday, September 12, 2009, 5:42 PM

Clinical trials are studies performed with human subjects to test new drugs or combinations of drugs. Most are funded by the same pharmaceutical company whose chemical is being tried, sometimes overseen by the FDA, most of whom are ex-drug company execs. They certainly serve their purpose, but we shouldn't put all our marbles in this one bag.

Many of us are performing our own 'clinical trials'. In a sense this web site is a clinical trial where we share information and protocols. We do this because nobody outside the medical establishment has the money or incentative to conduct alternative treatments. I wouldn't discard 's statements so quickly.

Tx works for some, but not for many. This is why we seek.

http://www.patienthealthinternational.com/about-clinical-trials/

[Guest guest]

RonWhen makes suggestions about the natural ways she looks after her health, I have no problem with it at all. In fact, as I've said here - I'm going to be looking much more closely at a healthier diet when I've done with this Trial that I'm on. Especially since I know the virus is now probably doing bad deeds to my kidney and lawd knows what else.I too believe that we are involved in our own special "clinical trial" just by sharing and caring here. Combined we probably know more about this disease, treatments, natural ways and side affects than any single Dr. or statistician. After all, we live with it and they can only speculate using a certain number of people in each group - like the one about sexual desire LOLGloria

Clinical trials are studies performed with human subjects to test new drugs or combinations of drugs. Most are funded by the same pharmaceutical company whose chemical is being tried, sometimes overseen by the FDA, most of whom are ex-drug company execs. They certainly serve their purpose, but we shouldn't put all our marbles in this one bag.

Many of us are performing our own 'clinical trials'. In a sense this web site is a clinical trial where we share information and protocols. We do this because nobody outside the medical establishment has the money or incentative to conduct alternative treatments. I wouldn't discard 's statements so quickly.

Tx works for some, but not for many. This is why we seek.

http://www.patienth ealthinternation al.com/about- clinical- trials/

Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

[Guest guest]

Hi Gloria

Why wait to look into improving your diet or lifestyle until after TX?

This is something you can do 'right now', on your own, without MD advice. [mostly]

I have my doubts that making home/personal improvements will have a negative effect on the results of TX or clinical trials, if that worries you.

If I am to start TX, I wont stop my alternative protocal unless my doc advises me to.

I plan on fighting this disease from all directions, to attempt more positive results.

This is just my opinion.

love

don in ks

From: Gloria <gadamscan@...>Subject: Re: [ ] Clinical Trial Date: Saturday, September 12, 2009, 8:33 PM

RonWhen makes suggestions about the natural ways she looks after her health, I have no problem with it at all. In fact, as I've said here - I'm going to be looking much more closely at a healthier diet when I've done with this Trial that I'm on. Especially since I know the virus is now probably doing bad deeds to my kidney and lawd knows what else.I too believe that we are involved in our own special "clinical trial" just by sharing and caring here. Combined we probably know more about this disease, treatments, natural ways and side affects than any single Dr. or statistician. After all, we live with it and they can only speculate using a certain number of people in each group - like the one about sexual desire LOLGloria

Clinical trials are studies performed with human subjects to test new drugs or combinations of drugs. Most are funded by the same pharmaceutical company whose chemical is being tried, sometimes overseen by the FDA, most of whom are ex-drug company execs. They certainly serve their purpose, but we shouldn't put all our marbles in this one bag.

Many of us are performing our own 'clinical trials'. In a sense this web site is a clinical trial where we share information and protocols. We do this because nobody outside the medical establishment has the money or incentative to conduct alternative treatments. I wouldn't discard 's statements so quickly.

Tx works for some, but not for many. This is why we seek.

http://www.patienth ealthinternation al.com/about- clinical- trials/

Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

[Guest guest]

DITTO...........

don't just rely on the drugs.....help your liver in every way

ESPECIALLY DIET

but having been there myself, maybe it's easier to say than do

but diet IS critical

RR

>

>

> From: Gloria <gadamscan@...>

> Subject: Re: [ ] Clinical Trial

>

> Date: Saturday, September 12, 2009, 8:33 PM

>

>

>

>

>

>

>

>

>

>

>

>

> Ron

>

> When makes suggestions about the natural ways she looks after her

health, I have no problem with it at all.  In fact, as I've said here - I'm

going to be looking much more closely at a healthier diet when I've done with

this Trial that I'm on.  Especially since I know the virus is now probably doing

bad deeds to my kidney and lawd knows what else.

>

> I too believe that we are involved in our own special " clinical trial " just by

sharing and caring here.  Combined we probably know more about this disease,

treatments, natural ways and side affects than any single Dr. or statistician. 

After all, we live with it and they can only speculate using a certain number of

people in each group - like the one about sexual desire   LOL

>

> Gloria

>

>

>

>

>

>

>  

>

>

> Clinical trials are studies performed with human subjects to test new drugs or

combinations of drugs. Most are funded by the same pharmaceutical company whose

chemical is being tried, sometimes overseen by the FDA, most of whom are ex-drug

company execs. They certainly serve their purpose, but we shouldn't put all our

marbles in this one bag.

> Many of us are performing our own 'clinical trials'. In a sense this web site

is a clinical trial where we share information and protocols. We do this because

nobody outside the medical establishment has the money or incentative to conduct

alternative treatments. I wouldn't discard 's statements so quickly.

> Tx works for some, but not for many. This is why we seek.

> http://www.patienth ealthinternation al.com/about- clinical- trials/

>

>

>

>

>

> Canada Toolbar : Search from anywhere on the web and bookmark your

favourite sites. Download it now!

>

[Guest guest]

Truthfully, Don - you are so very right. However, I am just tooo tired most days to think about meals. My husband does all the meals. He just knows now, that I require a lot of fruit and don't eat red meat or pork.I would never think to ask an MD advice on my supplements. If I were to ask anyone, instead of doing the research myself, I'm more inclined to ask my Pharmacist. Please, just keep doing whatever you are doing - obviously something is working right. You're still at the point that they may not recommend any treatment yet and especially concerning some of your other medical problems and how harsh treatment is and then there are the side affects.I don't remember if it was on this site or the other; but, someone was

sharing about the almost crippling pains all through their body and they haven't even come close to starting treatment. Please understand - a huge side affect of the Hep either before, during or after treatment, is a thing called Fibromyalgia.... Only an Arthritis Specialist can diagnose this and it is very common for those that suffer Hep C. My brother has this pain now and will not be allowed to even start treatment until after his appointment with the Arthritis Specialist in November. In his case, they are even suggesting that it could be lupus.Gloria

Hi Gloria

Why wait to look into improving your diet or lifestyle until after TX?

This is something you can do 'right now', on your own, without MD advice. [mostly]

I have my doubts that making home/personal improvements will have a negative effect on the results of TX or clinical trials, if that worries you.

If I am to start TX, I wont stop my alternative protocal unless my doc advises me to.

I plan on fighting this disease from all directions, to attempt more positive results.

This is just my opinion.

love

don in ks

From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] Clinical Trial Date: Saturday, September 12, 2009, 8:33 PM

RonWhen makes suggestions about the natural ways she looks after her health, I have no problem with it at all. In fact, as I've said here - I'm going to be looking much more closely at a healthier diet when I've done with this Trial that I'm on. Especially since I know the virus is now probably doing bad deeds to my kidney and lawd knows what else.I too believe that we are involved in our own special "clinical trial" just by sharing and caring here. Combined we probably know more about this disease, treatments, natural ways and side affects than any single Dr. or statistician. After all, we live with it and they can only speculate using a certain number of people in each group - like the one about sexual desire LOLGloria

Clinical trials are studies performed with human subjects to test new drugs or combinations of drugs. Most are funded by the same pharmaceutical company whose chemical is being tried, sometimes overseen by the FDA, most of whom are ex-drug company execs. They certainly serve their purpose, but we shouldn't put all our marbles in this one bag.

Many of us are performing our own 'clinical trials'. In a sense this web site is a clinical trial where we share information and protocols. We do this because nobody outside the medical establishment has the money or incentative to conduct alternative treatments. I wouldn't discard 's statements so quickly.

Tx works for some, but not for many. This is why we seek.

http://www.patienth ealthinternation al.com/about- clinical- trials/

Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

Make your browsing faster, safer, and easier with the new Internet Explorer® 8. Optimized for Get it Now for Free!

[Guest guest]

Hi Gloria

In the 1990's the doctors diagnosed me with CHF [congestive heart failure] and lupus.

In 2008 they told me I had HCV.

Talking with the doc's, and doing research since then, I am thinking that my CHF is HCV related, and the lupus is really fibro, also HCV related.

I could be wrong as Ive not undergone any extensive testing for these.

The docs do monitor my heart, and I have been given pain meds that I rarely take. [use as needed]

Also, going to the doc's freaks me out.

On one hand I dont want to know because that will just make it 'real'.

On the other hand I have so many issues that I want answers for.

Its very hard for me to accept age and ill health.

Just yesterday I was superman. lol

love

don in ks

From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] Clinical Trial Date: Saturday, September 12, 2009, 8:33 PM

RonWhen makes suggestions about the natural ways she looks after her health, I have no problem with it at all. In fact, as I've said here - I'm going to be looking much more closely at a healthier diet when I've done with this Trial that I'm on. Especially since I know the virus is now probably doing bad deeds to my kidney and lawd knows what else.I too believe that we are involved in our own special "clinical trial" just by sharing and caring here. Combined we probably know more about this disease, treatments, natural ways and side affects than any single Dr. or statistician. After all, we live with it and they can only speculate using a certain number of people in each group - like the one about sexual desire LOLGloria

Clinical trials are studies performed with human subjects to test new drugs or combinations of drugs. Most are funded by the same pharmaceutical company whose chemical is being tried, sometimes overseen by the FDA, most of whom are ex-drug company execs. They certainly serve their purpose, but we shouldn't put all our marbles in this one bag.

Many of us are performing our own 'clinical trials'. In a sense this web site is a clinical trial where we share information and protocols. We do this because nobody outside the medical establishment has the money or incentative to conduct alternative treatments. I wouldn't discard 's statements so quickly.

Tx works for some, but not for many. This is why we seek.

http://www.patienth ealthinternation al.com/about- clinical- trials/

Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

Make your browsing faster, safer, and easier with the new Internet Explorer® 8. Optimized for Get it Now for Free!

[Guest guest]

I am reading backwards.... sorry...... if you have CHF and Lupus Don it is quite

possible that you might not even qualify for treatment. Talk to your gastro

though. It is usually heart problems, severe depression and/or seizures that

prevent someone from trying treatment.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> Truthfully, Don - you are so very right. However, I am just tooo tired most

days to think about meals. My husband does all the meals. He just knows now,

that I require a lot of fruit and don't eat red meat or pork.

>

> I would never think to ask an MD advice on my supplements. If I were to ask

anyone, instead of doing the research myself, I'm more inclined to ask my

Pharmacist.

>

> Please, just keep doing whatever you are doing - obviously something is

working right. You're still at the point that they may not recommend any

treatment yet and especially concerning some of your other medical problems and

how harsh treatment is and then there are the side affects.

>

> I don't remember if it was on this site or the other; but, someone was sharing

about the almost crippling pains all through their body

[Guest guest]

Hi PS Pam

I understand what you are saying, and am concerned about this too.

My VL is still low, and my stats are pretty good, so hopefully...........

love

don in ks

From: figment_4 <figment@...>Subject: [ ] Re: Clinical Trial Date: Saturday, September 12, 2009, 10:39 PM

I am reading backwards.... sorry...... if you have CHF and Lupus Don it is quite possible that you might not even qualify for treatment. Talk to your gastro though. It is usually heart problems, severe depression and/or seizures that prevent someone from trying treatment.~~~~~~~~~~~~~~~~~~~~~~~~~~~~>> Truthfully, Don - you are so very right. However, I am just tooo tired most days to think about meals. My husband does all the meals. He just knows now, that I require a lot of fruit and don't eat red meat or pork.> > I would never think to ask an MD advice on my supplements. If I were to ask anyone, instead of doing the research

myself, I'm more inclined to ask my Pharmacist. > > Please, just keep doing whatever you are doing - obviously something is working right. You're still at the point that they may not recommend any treatment yet and especially concerning some of your other medical problems and how harsh treatment is and then there are the side affects.> > I don't remember if it was on this site or the other; but, someone was sharing about the almost crippling pains all through their body ------------------------------------

[Guest guest]

Hi PS Pam

I agree with you.

Stats dont tell the full story.

love

don in ks

From: PeachStatePam <figment@...>Subject: [ ] Clinical Trial Date: Saturday, September 12, 2009, 11:34 PM

Just remember that Viral Load doesn't have a thing to do with liver damage. Viral load simply means you have an active/chronic case of Hep C whether it is 100 IU's or 123 million. It is JUST a number and only important before, during and after treatment. We had a man at my last support group meeting who gets one done by his internist every 6 months because he says that information lets him know if he is more infectious or not. He is an idiot. We are infectious whether we have 100 or 123 million. He needs to get back to a hep doc and get his facts straight. I try my best to keep my "toxic waste dump blood" to myself LOL

My labs have been good, including ALT and AST since the beginning. I have cirrhosis by biopsy so labs are not a good indicator of what is actually going on in the liver. Just a friendly reminder :-)

Re: [ ] Re: Clinical Trial

Hi PS Pam

I understand what you are saying, and am concerned about this too.

My VL is still low, and my stats are pretty good, so hopefully...........

love

don in ks

[Guest guest]

I didn't say that this Don had CHF (??) and/or Lupus and apparently once they find out with my brother "Don" where the pain is actually coming from he'll probably be clear for treatment of his geno 3 HepC.I believe that you would have to have a long history with "severe depression". How could we struck down with this dragon not have a little depression?? I was already on anti-d's when I started this Trial and have even had them upped during treatment.Gloria

I am reading backwards... . sorry...... if you have CHF and Lupus Don it is quite possible that you might not even qualify for treatment. Talk to your gastro though. It is usually heart problems, severe depression and/or seizures that prevent someone from trying treatment.

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

>

> Truthfully, Don - you are so very right. However, I am just tooo tired most days to think about meals. My husband does all the meals. He just knows now, that I require a lot of fruit and don't eat red meat or pork..

>

> I would never think to ask an MD advice on my supplements. If I were to ask anyone, instead of doing the research myself, I'm more inclined to ask my Pharmacist.

>

> Please, just keep doing whatever you are doing - obviously something is working right. You're still at the point that they may not recommend any treatment yet and especially concerning some of your other medical problems and how harsh treatment is and then there are the side affects.

>

> I don't remember if it was on this site or the other; but, someone was sharing about the almost crippling pains all through their body

Looking for the perfect gift? Give the gift of Flickr!

[Guest guest]

Oh thank you Pam, for clarifying this whole picture even more !!! I'd forgot to say that the only way to find out for sure, how much damage has been done to the liver, is through the liver biopsy or if your lucky enough, hopefully someone uses fibrosure.More infectious or not - what a lack of knowledge!!My labs on the ALT's or the AST's have hardly ever been within the normal levels even on treatment. Mostly when I'm watching those labs, it's to see what my HGB, WCB, Neutrphils and Platelets are doing. Then about once a month they are supposed to test my Thyroid because it went off kilter on the last treatment. All I know for sure, at this point, is that my viral count must be a 0 or I would not still be on this treatment at

all.Gloria

Just remember that Viral Load doesn't have a thing to do with liver damage. Viral load simply means you have an active/chronic case of Hep C whether it is 100 IU's or 123 million. It is JUST a number and only important before, during and after treatment. We had a man at my last support group meeting who gets one done by his internist every 6 months because he says that information lets him know if he is more infectious or not.. He is an idiot. We are infectious whether we have 100 or 123 million. He needs to get back to a hep doc and get his facts straight. I try my best to keep my "toxic waste dump blood" to myself LOL

My labs have been good, including ALT and AST since the beginning. I have cirrhosis by biopsy so labs are not a good indicator of what is actually going on in the liver. Just a friendly reminder :-)

Re: [ ] Re: Clinical Trial

Hi PS Pam

I understand what you are saying, and am concerned about this too.

My VL is still low, and my stats are pretty good, so hopefully... ........

love

don in ks

Ask a question on any topic and get answers from real people. Go to Answers.

[Guest guest]

Hi Gloria,

Next time you get labs ask for a nicotine lab.

You might try to get that to zero. It can only help

all your other lab results.

It boggles the mind that public health care pays for the treatment

of smokers who aren't quitting. That won't last.‹(•¿•)› Ress Felton, CATobacco. Tumor causing, teeth staining, smelly, puking habit. ~Arizona Department of Health Services Tobacco Education and Prevention Program ad campaign, created by Riester-Robb Advertising

From: Gloria <gadamscan@...>Subject: Re: [ ] Clinical Trial Date: Sunday, September 13, 2009, 1:08 PM

Oh thank you Pam, for clarifying this whole picture even more !!! I'd forgot to say that the only way to find out for sure, how much damage has been done to the liver, is through the liver biopsy or if your lucky enough, hopefully someone uses fibrosure.More infectious or not - what a lack of knowledge!!My labs on the ALT's or the AST's have hardly ever been within the normal levels even on treatment. Mostly when I'm watching those labs, it's to see what my HGB, WCB, Neutrphils and Platelets are doing. Then about once a month they are supposed to test my Thyroid because it went off kilter on the last treatment. All I know for sure, at this point, is that my viral count must be a 0 or I would not still be on this treatment at all.Gloria

Just remember that Viral Load doesn't have a thing to do with liver damage. Viral load simply means you have an active/chronic case of Hep C whether it is 100 IU's or 123 million. It is JUST a number and only important before, during and after treatment. We had a man at my last support group meeting who gets one done by his internist every 6 months because he says that information lets him know if he is more infectious or not.. He is an idiot. We are infectious whether we have 100 or 123 million. He needs to get back to a hep doc and get his facts straight. I try my best to keep my "toxic waste dump blood" to myself LOL

My labs have been good, including ALT and AST since the beginning. I have cirrhosis by biopsy so labs are not a good indicator of what is actually going on in the liver. Just a friendly reminder :-)

Re: [ ] Re: Clinical Trial

Hi PS Pam

I understand what you are saying, and am concerned about this too.

My VL is still low, and my stats are pretty good, so hopefully... ........

love

don in ks

Ask a question on any topic and get answers from real people. Go to Answers.

[Guest guest]

Don't you understand when a person has told already to get out of my face !!!! It should boggle your mind even more that public health would pay for the treatment of a great deal of health issues!! I can think of many that suffer ill health because of their choices in life (including illegal drugs). Thank heavens we still have some intelligent people in those Health Depts. that do not believe in cutting folks off care just because of their own lack of good sense.Were you aware that just standing over a BBQ gives you even more toxic garbage than one cigarette???So, stop with the campaign and take your opinions somewhere else - I've had enough !!!Right now, you are being more toxic to my

state of mind than the cigarette that I just lit. I've come to know personally, that any negative stress in my life causes me more damage to my health than anything right now.I have more on my mind wondering about a CT Scan being called for because of the lesions found on my liver than worrying about your almighty opinions being shoved down my throat!!!Gloria

Hi Gloria,

Next time you get labs ask for a nicotine lab.

You might try to get that to zero. It can only help

all your other lab results.

It boggles the mind that public health care pays for the treatment

of smokers who aren't quitting. That won't last.‹(•¿•)› Ress Felton, CATobacco. Tumor causing, teeth staining, smelly, puking habit. ~Arizona Department of Health Services Tobacco Education and Prevention Program ad campaign, created by Riester-Robb Advertising

From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] Clinical Trial Date: Sunday, September 13, 2009, 1:08 PM

Oh thank you Pam, for clarifying this whole picture even more !!! I'd forgot to say that the only way to find out for sure, how much damage has been done to the liver, is through the liver biopsy or if your lucky enough, hopefully someone uses fibrosure.More infectious or not - what a lack of knowledge!!My labs on the ALT's or the AST's have hardly ever been within the normal levels even on treatment. Mostly when I'm watching those labs, it's to see what my HGB, WCB, Neutrphils and Platelets are doing. Then about once a month they are supposed to test my Thyroid because it went off kilter on the last treatment. All I know for sure, at this point, is that my viral count must be a 0 or I would not still be on this treatment at all.Gloria

Just remember that Viral Load doesn't have a thing to do with liver damage. Viral load simply means you have an active/chronic case of Hep C whether it is 100 IU's or 123 million. It is JUST a number and only important before, during and after treatment. We had a man at my last support group meeting who gets one done by his internist every 6 months because he says that information lets him know if he is more infectious or not.. He is an idiot. We are infectious whether we have 100 or 123 million. He needs to get back to a hep doc and get his facts straight. I try my best to keep my "toxic waste dump blood" to myself LOL

My labs have been good, including ALT and AST since the beginning. I have cirrhosis by biopsy so labs are not a good indicator of what is actually going on in the liver. Just a friendly reminder :-)

Re: [ ] Re: Clinical Trial

Hi PS Pam

I understand what you are saying, and am concerned about this too.

My VL is still low, and my stats are pretty good, so hopefully... ........

love

don in ks

Ask a question on any topic and get answers from real people. Go to Answers.

All new - Get a sneak peak at messages with a handy reading pane.

[Guest guest]

hey gloria whassup buttercup, i got a cool woodstock book today and i am going to read it after i vacuum. saw my baby's picture after 36 years so i am psyched. ritaOn Sun, Sep 13, 2009 at 3:08 PM, Gloria <gadamscan@...> wrote:

Oh thank you Pam, for clarifying this whole picture even more !!!  I'd forgot to say that the only way to find out for sure, how much damage has been done to the liver, is through the liver biopsy or if your lucky enough, hopefully someone uses fibrosure.

More infectious or not - what a lack of knowledge!!My labs on the ALT's or the AST's have hardly ever been within the normal levels even on treatment.  Mostly when I'm watching those labs, it's to see what my HGB, WCB, Neutrphils and Platelets are doing.  Then about once a month they are supposed to test my Thyroid because it went off kilter on the last treatment.  All I know for sure, at this point, is that my viral count must be a 0 or I would not still be on this treatment at

all.Gloria

 

Just remember that Viral Load doesn't have a thing to do with liver damage.   Viral load simply means you have an active/chronic case of Hep C whether it is 100 IU's or 123 million.   It is JUST a number and only important before, during and after treatment.    We had a man at my last support group meeting who gets one done by his internist every 6 months because he says that information lets him know if he is more infectious or not..    He is an idiot.   We are infectious whether we have 100 or 123 million.   He needs to get back to a hep doc and get his facts straight.   I try my best to keep my " toxic waste dump blood " to myself   LOL

 

My labs have been good, including ALT and AST since the beginning.   I have cirrhosis by biopsy so labs are not a good indicator of what is actually going on in the liver.   Just a friendly reminder  :-)

Re: [ ] Re: Clinical Trial

Hi PS Pam

I understand what you are saying, and am concerned about this too.

My VL is still low, and my stats are pretty good, so hopefully... ........

love

don in ks

Ask a question on any topic and get answers from real people. Go to Answers.

[Guest guest]

GloriaChill, relax take a deep breathYou seem to feel, think that your opinion is the only valid argument for whatever topic is on the table.I like others have read your posts, and you have some good points. You have shared some ideas, concept, etc., which can cause a person to rethink certain. items, ares,etc in their lives.We all have a delete button, and we all have the freedom to push that button on any and/or all posts from any and/or all persons..So please for the harmony of the list. Allow others to disagree, have and/or share thier opinions...And do not be so hateful acting to the list membersYou have so good info which can help someone. So relax, chill, take a deep breath and lets help each otherFrom our home to your home, we pray and speak blessings, success and prosperity.Dr. Walter L. Scheu, Sr. - PastorRestoration Community Fellowship

From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] Clinical Trial Date: Sunday, September 13, 2009, 1:08 PM

Oh thank you Pam, for clarifying this whole picture even more !!! I'd forgot to say that the only way to find out for sure, how much damage has been done to the liver, is through the liver biopsy or if your lucky enough, hopefully someone uses fibrosure.More infectious or not - what a lack of knowledge!!My labs on the ALT's or the AST's have hardly ever been within the normal levels even on treatment. Mostly when I'm watching those labs, it's to see what my HGB, WCB, Neutrphils and Platelets are doing. Then about once a month they are supposed to test my Thyroid because it went off kilter on the last treatment. All I know for sure, at this point, is that my viral count must be a 0 or I would not still be on this treatment at all.Gloria

Just remember that Viral Load doesn't have a thing to do with liver damage. Viral load simply means you have an active/chronic case of Hep C whether it is 100 IU's or 123 million. It is JUST a number and only important before, during and after treatment. We had a man at my last support group meeting who gets one done by his internist every 6 months because he says that information lets him know if he is more infectious or not.. He is an idiot. We are infectious whether we have 100 or 123 million. He needs to get back to a hep doc and get his facts straight. I try my best to keep my "toxic waste dump blood" to myself LOL

My labs have been good, including ALT and AST since the beginning. I have cirrhosis by biopsy so labs are not a good indicator of what is actually going on in the liver. Just a friendly reminder :-)

Re: [ ] Re: Clinical Trial

Hi PS Pam

I understand what you are saying, and am concerned about this too.

My VL is still low, and my stats are pretty good, so hopefully... ........

love

don in ks

Ask a question on any topic and get answers from real people. Go to Answers.

All new - Get a sneak peak at messages with a handy reading pane.

[Guest guest]

WalterAll I am doing is expressing "MY" opinion. That is, that I do not want to be lectured to continually or have someone bring up posts that I felt were already put to bed.I DO NOT think that my opinion is the only valid argument and I learn from many many other members here.If there is disharmony here on this list, perhaps you should look a little closer to home!! I am not hateful to any person in my life or elsewhere!!! If you care to research a little closer - you might find that has offered her opinion on the smoking issue several times. I certainly do not disagree with the fact that smoking is very bad for us. But, I also know for a fact that to continually berate a person for an addiction can and will have the opposite

affect. It is not conducive to a caring or compassionate attitude.In fact, what you are doing right now has the same effect... Since you find fault with what I have to say - USE YOUR OWN DELETE BUTTON. Now, this time - she wrote directly to me, again when I have tried to let her know that I do not care for her advice. I'm still boggled over the suggestion that LSD or Mushrooms could replace anti-D's. It's obvious at that point that she really doesn't have a clue what those street drugs do. The very thought of going psychedelic when you really need to smooth the rough edges out in your life!!!From this point on, I will do exactly what you have suggested and DELETE posts from either one of you. I have not found yet where you've had anything to offer to a discussion anyway.Gloria

GloriaChill, relax take a deep breathYou seem to feel, think that your opinion is the only valid argument for whatever topic is on the table.I like others have read your posts, and you have some good points. You have shared some ideas, concept, etc., which can cause a person to rethink certain. items, ares,etc in their lives.We all have a delete button, and we all have the freedom to push that button on any and/or all posts from any and/or all persons..So please for the harmony of the list. Allow others to disagree, have and/or share thier opinions...And do not be so hateful acting to the list

membersYou have so good info which can help someone. So relax, chill, take a deep breath and lets help each otherFrom our home to your home, we pray and speak blessings, success and prosperity.Dr. Walter L. Scheu, Sr. - PastorRestoration Community Fellowship

From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] Clinical Trial Date: Sunday, September 13, 2009, 1:08 PM

Oh thank you Pam, for clarifying this whole picture even more !!! I'd forgot to say that the only way to find out for sure, how much damage has been done to the liver, is through the liver biopsy or if your lucky enough, hopefully someone uses fibrosure.More infectious or not - what a lack of knowledge!!My labs on the ALT's or the AST's have hardly ever been within the normal levels even on treatment. Mostly when I'm watching those labs, it's to see what my HGB, WCB, Neutrphils and Platelets are doing. Then about once a month they are supposed to test my Thyroid because it went off kilter on the last treatment. All I know for sure, at this point, is that my viral count must be a 0 or I would not still be on this treatment at all.Gloria

Just remember that Viral Load doesn't have a thing to do with liver damage. Viral load simply means you have an active/chronic case of Hep C whether it is 100 IU's or 123 million. It is JUST a number and only important before, during and after treatment. We had a man at my last support group meeting who gets one done by his internist every 6 months because he says that information lets him know if he is more infectious or not.. He is an idiot. We are infectious whether we have 100 or 123 million. He needs to get back to a hep doc and get his facts straight. I try my best to keep my "toxic waste dump blood" to myself LOL

My labs have been good, including ALT and AST since the beginning. I have cirrhosis by biopsy so labs are not a good indicator of what is actually going on in the liver. Just a friendly reminder :-)

Re: [ ] Re: Clinical Trial

Hi PS Pam

I understand what you are saying, and am concerned about this too.

My VL is still low, and my stats are pretty good, so hopefully... .........

love

don in ks

Ask a question on any topic and get answers from real people. Go to Answers.

All new - Get a sneak peak at messages with a handy reading pane.

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new

[Guest guest]

Giving CCI-779 with imatinib mesylate may kill more cancer cells.

Last Updated: June 19, 2009

http://www.clinicaltrials.gov/ct2/show/NCT00101088?term=chronic+myelogenous+leuk\

emia & rank=15

FYI,

Lottie Duthu

[Guest guest]

This is fairly common in lenalidomide trials, certainly in the early days when

dosages were higher. They seem to have a fairly high drop-out rate. People

either get tumour flare or tumour lysis syndrome and pack it in...

~chris

>

> I wonder why this clinical trial was terminated due to " lack of efficacy

> and tolerability. " What does that mean? Does it mean that it didn't

> work, and furthermore, that no one could take it without bad side

> effects?

>

http://clinicaltrials.gov/ct2/show/NCT00543114?term=revlimid+and+rituxan & rank=13

>

> Ellen

>

[Guest guest]

So, is the TLS similar to that in rtx. tx.?

Ellen

cllcanada wrote:

This is fairly common in lenalidomide trials, certainly

in the early days when dosages were higher. They seem to have a fairly

high drop-out rate. People either get tumour flare or tumour lysis syndrome

and pack it in...

~chris

>

> I wonder why this clinical trial was terminated due to "lack of efficacy

> and tolerability." What does that mean? Does it mean

that it didn't

> work, and furthermore, that no one could take it without bad side

> effects?

> http://clinicaltrials.gov/ct2/show/NCT00543114?term=revlimid+and+rituxan & rank=13

>

> Ellen

[Guest guest]

TLS is the failure of the kidneys to handle the disposal of killed white blood

cells

As white blood cells are killed after treatment for CLL, the cell membrane is

ruptured. This causes the internal contents of the cells to spill out into the

peripheral blood. In cases where the destruction of cells is very rapid, this

release overwhelms the body's ability to maintain homeostasis, leading to one or

more of these five metabolic abnormalities; hyperuricemia, hyperkalemia,

hyperphosphotemia, hypocalcemia and uremia.

These abnormalities are considered to be part of Tumour Lysis Syndrome, but they

can also have other causes. Most are treated separately to CLL and prevention is

the key.

Revlimid (Lenalidomide) is one of the drugs that cause TLS and a number of cases

have been seen with Rituxan, Cladribine, Fludarabine and Bendamustine.

TLS is often treated with Allopurinol for the uric acid and lots of fluids for

the potassium. Low-dose Elitek (Rasburicase, Fasturtec), a recombinant uricase

(which catalyses the conversion of uric acid to the more readily excreted

allantoin) has proven to have success in treating TLS in CLL, given prior to CLL

therapy, with large quantities of fluid.

A new drug used to treat gout, Uloric or Takeda (Febuxostat), a xanthine oxidase

inhibitor, has been proposed for hyperuricaemia but has not yet FDA approved for

this application.

~chris

> > >

> > > I wonder why this clinical trial was terminated due to " lack of efficacy

> > > and tolerability. " What does that mean? Does it mean that it didn't

> > > work, and furthermore, that no one could take it without bad side

> > > effects?

> > >

http://clinicaltrials.gov/ct2/show/NCT00543114?term=revlimid+and+rituxan & rank=13

> > >

> > > Ellen

>

[Guest guest]

I wonder if thalidomide has any use in cll. It is in the same class as

lenalidomide.

Ellen

cllcanada wrote:

> TLS is the failure of the kidneys to handle the disposal of killed white blood

cells

>

> As white blood cells are killed after treatment for CLL, the cell membrane is

ruptured. This causes the internal contents of the cells to spill out into the

peripheral blood. In cases where the destruction of cells is very rapid, this

release overwhelms the body's ability to maintain homeostasis, leading to one or

more of these five metabolic abnormalities; hyperuricemia, hyperkalemia,

hyperphosphotemia, hypocalcemia and uremia.

>

> These abnormalities are considered to be part of Tumour Lysis Syndrome, but

they can also have other causes. Most are treated separately to CLL and

prevention is the key.

>

> Revlimid (Lenalidomide) is one of the drugs that cause TLS and a number of

cases have been seen with Rituxan, Cladribine, Fludarabine and Bendamustine.

>

> TLS is often treated with Allopurinol for the uric acid and lots of fluids for

the potassium. Low-dose Elitek (Rasburicase, Fasturtec), a recombinant uricase

(which catalyses the conversion of uric acid to the more readily excreted

allantoin) has proven to have success in treating TLS in CLL, given prior to CLL

therapy, with large quantities of fluid.

>

> A new drug used to treat gout, Uloric or Takeda (Febuxostat), a xanthine

oxidase inhibitor, has been proposed for hyperuricaemia but has not yet FDA

approved for this application.

>

> ~chris

>

> -