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--- rep@... wrote:

> Do you or anyone else know of a website that I can

> look for clinical trials

> and studys.

Bob,

Here is an address for one place:

http://www.clinicaltrials.gov/ct/gui/c/r

There may be others, and you may want to check with

the drug companies themselves. Also, I was asked to

pass on the advice to NOT give up when trying to get

into a clinical trial. Call, call, call, and then

call again. Be persistant. Do NOT give up. Don't

let them forget about you.

Claudine

__________________________________________________

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  • 11 months later...

Good find Melinda!

I'd like to call attention to trial #17 where

methylphenidate (Ritalin, etc.) is given to melanoma

patients to counter fatigue (and cognitive

dysfunction?) and to measure its effect on the

chemotherapy (interferon?) that's being used on these

patients. I have read on other posts that there is

reason to believe that CNS depressants may stimulate

the immune system (as it wears off) and that CNS

stimulants (methylphenidate, etc) may potentiate the

immune system as they begin to work. In the latter

scenario, can we hope to see a benign synergism with

the chemotherapeutic agent being used?

Dr. Vince, any comments would be appreciated?

Gerald

--- Melinda Wiman <wiman@...> wrote:

> Has anyone reviewed any of the trials listed at

> http://www.complesys.com/treatments/trials.html?

>

> Melinda Wiman

> www.cancure.org

> Cancer Cure Foundation

>

>

__________________________________________________

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From: Gerald Oros <postman23_2000@...>

Date sent: Mon, 15 Oct 2001 22:55:55 -0700 (PDT)

Subject: Re: Clinical trials

> methylphenidate (Ritalin, etc.) is given to melanoma

> patients to counter fatigue (and cognitive

> dysfunction?) and to measure its effect on the

> chemotherapy (interferon?) that's being used on these

> patients. I have read on other posts that there is

> reason to believe that CNS depressants may stimulate

> the immune system (as it wears off) and that CNS

> stimulants (methylphenidate, etc) may potentiate the

> immune system as they begin to work. In the latter

> scenario, can we hope to see a benign synergism with

> the chemotherapeutic agent being used?

> Gerald

Hi Gerald,

You are asking about a product which may stimulate

interferon

production, potentiate the immune system and work synergistically with chemo.

Beta Glucan will do all those things and more and it is cheap and a natural

product.

Yeast derived Beta Glucan has been shown to raise interferon levels,

interleukin

levels, tumor necrosis factor levels and colony stimulating factor levels. It

has

been shown to be a potent activator of the immune system and to induce the

immune

cascade naturally, resulting in an increase in numbers and activation of T

cells.

In clinical trials in Japan, mushroom derived Beta Glucan was shown to work

sysnergistically with chemo resulting in twice the long term (5 year) survival

of

cancer patients compared to those who took chemo without Beta Glucan.

In animal studies animals inoculated with tumors, did not develop tumors when

given Beta Glucan, whereas control animals did develop tumors.

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  • 4 months later...

TIM< you are probably right - wouldn't this be an interesting subject

for an expose'? " Study halted due to high rate of suicide among

children " We should try like hell to get the details of this!

Jamo

>

> Dear Suzy,

>

> They started them to see if they could sell Prozac to kids. I'll bet they

terminated it because too many kids died, probably from suicide.

>

> , my new friend, is on Lithium and I assure you that adding Prozac to

it would be a deadly combination. I wonder how many died before they stopped.

>

>

>

> Tim

>

>

>

> ---------------------------------

>

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TIM< you are probably right - wouldn't this be an interesting subject

for an expose'? " Study halted due to high rate of suicide among

children " We should try like hell to get the details of this!

Jamo

>

> Dear Suzy,

>

> They started them to see if they could sell Prozac to kids. I'll bet they

terminated it because too many kids died, probably from suicide.

>

> , my new friend, is on Lithium and I assure you that adding Prozac to

it would be a deadly combination. I wonder how many died before they stopped.

>

>

>

> Tim

>

>

>

> ---------------------------------

>

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TIM< you are probably right - wouldn't this be an interesting subject

for an expose'? " Study halted due to high rate of suicide among

children " We should try like hell to get the details of this!

Jamo

>

> Dear Suzy,

>

> They started them to see if they could sell Prozac to kids. I'll bet they

terminated it because too many kids died, probably from suicide.

>

> , my new friend, is on Lithium and I assure you that adding Prozac to

it would be a deadly combination. I wonder how many died before they stopped.

>

>

>

> Tim

>

>

>

> ---------------------------------

>

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TIM< you are probably right - wouldn't this be an interesting subject

for an expose'? " Study halted due to high rate of suicide among

children " We should try like hell to get the details of this!

Jamo

>

> Dear Suzy,

>

> They started them to see if they could sell Prozac to kids. I'll bet they

terminated it because too many kids died, probably from suicide.

>

> , my new friend, is on Lithium and I assure you that adding Prozac to

it would be a deadly combination. I wonder how many died before they stopped.

>

>

>

> Tim

>

>

>

> ---------------------------------

>

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  • 3 years later...

You are very welcome. I think HCV needs pads on the liver, as well as

bloodstream treated.

300mA? be sure you have your resistors right!!! that is a huge

current. 300 MICROamps (not milliamps) is that what you mean?

bG

>

> first ,i'd like to thank all group for the information they give and

> the details that help me in constucting 4*9 dc cell with an exit of

> 300 mA and for now i tried it with cases of common cold and flu and

it

> gives me a remarkable results and soon i'll try it with HCV.

> THANKS

> SPECIALLY FOR

> BABY GRAND , SHIRLEY REED , NASOS , SASHA , V , RENNE VOTTA , DICK

> RHOCHON AND J Mc NAIL

>

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  • 9 months later...
Guest guest

I haven't done that. And i'm not sure on the insurance part. I would call your

insurance and ask ...

Tonja

clinical trials

Has anyone participated in a clinical trial ? I am wondering about

complications down the road , will my insurance pay, or since I had a

clinicl trail ,will they refuse ?

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  • 6 months later...
  • 1 year later...
Guest guest

i know that there are plenty of people with fibro that still suffer greatly even with medication.. but then there are people like myself that have found that right combination of medications and lifestyle adjustments that means symopmtoms are under control... and because i have found control my family thinks everything is better.. do those of us that have minimual problems have fibro any less? yes, i know i am on of lucky ones. yes, i want much more research done and trials are not in the areas i would like to see either.. but i would love to see a more positive attitude the improvements can be made (and for some people these commericals are not unrealistics)

>>>still grit my teeth at the Fibro commercials where after taking

lyrica they can garden, reach their hands over their head, paint,

and lift children! Some of the studies are so that pharm companies

can get their hand in the candy jar with something that won't really

help us - but won't really hurt us either.On Fri, Jun 13, 2008 at 6:43 PM, CJ <alliekeel@...> wrote:

http://clinicaltrials.gov/ct2/results?term=fibromyalgia

There are currently 158 clinical trials going on right now for

fibromyalgia. That is a good thing! At least they believe it is a

substantial disease to study. However, I see that most are

cognitive-behavioral, exercise, ANTIDEPRESSANTS, muscle relaxants,

botulism and pain meds that have been studied over and over again.

I still grit my teeth at the Fibro commercials where after taking

lyrica they can garden, reach their hands over their head, paint,

and lift children! Some of the studies are so that pharm companies

can get their hand in the candy jar with something that won't really

help us - but won't really hurt us either.

Anyway, some of you may be interested in participating.

Let me know if anyone out there is currently in a study.

Thanks for listening to me this week!

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Guest guest

>

> > http://clinicaltrials.gov/ct2/results?term=fibromyalgia

> >

> > There are currently 158 clinical trials going on right now for

> > fibromyalgia. That is a good thing! At least they believe it is a

> > substantial disease to study. However, I see that most are

> > cognitive-behavioral, exercise, ANTIDEPRESSANTS, muscle relaxants,

> > botulism and pain meds that have been studied over and over again.

> >

> > I still grit my teeth at the Fibro commercials where after taking

> > lyrica they can garden, reach their hands over their head, paint,

> > and lift children! Some of the studies are so that pharm companies

> > can get their hand in the candy jar with something that won't

really

> > help us - but won't really hurt us either.

> >

> > Anyway, some of you may be interested in participating.

> >

> > Let me know if anyone out there is currently in a study.

> >

> > Thanks for listening to me this week!

> >

> >

> >

>

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  • 3 months later...

re: I have noticed that most clinical trials for CLL are usually for

pts. who are refractory to past tx. or no longer responding to tx.

because they really need to hopefully find something that will help

them, but I have always wondered if perhaps the clinical trial could

for some reason not work with this group and might work for those in

early stages of CLL or at stage O.

>

Hi, Good question and observation. With immunotherapies and targeted

agents -- that have more transient and reversible toxicities -- we

might begin to see more studies of new agents in previously

untreated, but this is a difficult path to approval ... as Dr. Furman

noted in an earlier post ... requires more expensive randomized

trials and much longer follow up to demonstrate superiority over

existing protocols.

Ultimately, improving survival is the most reliable endpoint of

providing clinical benefit in such trials, because lots of agents are

active in the untreated ... lead to responses, but may not change the

bottom line.

So as a business strategy sponsors often decide to test new agents in

patient refractory to standard therapies (an unmet need) which is

much easier to prove conclusively.

Once proven to be active and helpful in this difficult clinical

setting the approved agent will sometimes be tested in combination

with others agents in first line therapies. Such as what happened

when Rituxan (approved in relapsed setting) was combined with CVP

(CVP versus CVP-R) in first primary therapy of fNHL.

But to your point, with this business strategy we may be missing

opportunities to test some agents when they will do the most good.

Such as immunotherapy on the previously untreated, who may have

better immune competence and ability to benefit ... such as revlimid

first line? Perhaps the NCI and cooperative groups will sponsor such

trials.

Query of clinicaltrils.gov (in untreated CLL):

http://tinyurl.com/3otp8g

All the best,

Karl

>

> I have noticed that most clinical trials for CLL are usually for

pts.

> who are refractory to past tx. or no longer responding to tx. I

> understand that this group truly needs to have access to trials

> because they really need to hopefully find something that will help

> them, but I have always wondered if perhaps the clinical trial could

> for some reason not work with this group and might work for those in

> early stages of CLL or at stage O.

>

> That said, I wonder why trials are not set up with 2 arms that study

> how the late stage refractory group responds and how the stage 0 and

> early stage group would respond.

>

> Dr Furman and , can you comment?

>

> I would love to go to the Nov 8 workshop, sounds great, but I will

be

> in Az at that time. Would have loved to meet you all!

> Randolph

> Atypical CLL

> Stage 0

>

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Fran, I was dx in May. In August, my wbc had went from 49,000 to 115,000. I was put in the Revlimid trial at MDACC. In four days my WBC dropped back to 49,000. My other counts are down a little. My side effect are fatigue, itching, and enlarged nodes. Ruth

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Ruth,

Did your Revlimid trial include Rituxan?

Thanks

Tipton

dx June 2001

On Sun, Sep 28, 2008 at 11:01 AM, Ruth <rsnider@...> wrote:

Fran, I was dx in May. In August, my wbc had went from 49,000 to 115,000. I was put in the Revlimid trial at MDACC. In four days my WBC dropped back to 49,000. My other counts are down a little. My side effect are fatigue, itching, and enlarged nodes. Ruth

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Karl covered much of what is relevant to your question. Just to add,

it is important to not assume that because something is not

chemotherapy does not mean it is going to be safe and well

tolerated. Because of the greater needs of patients with fewer

options, the " community " at large is more willing to accept risks.

Even with something like the vaccines, we did not know whether there

might be a great deal of autoimmunity that results. So it was tried

in many patients who had gone through a great deal of therapy before

it was used in untreated patients.

>

> I have noticed that most clinical trials for CLL are usually for

pts.

> who are refractory to past tx. or no longer responding to tx. I

> understand that this group truly needs to have access to trials

> because they really need to hopefully find something that will help

> them, but I have always wondered if perhaps the clinical trial could

> for some reason not work with this group and might work for those in

> early stages of CLL or at stage O.

>

> That said, I wonder why trials are not set up with 2 arms that study

> how the late stage refractory group responds and how the stage 0 and

> early stage group would respond.

>

> Dr Furman and , can you comment?

>

> I would love to go to the Nov 8 workshop, sounds great, but I will

be

> in Az at that time. Would have loved to meet you all!

> Randolph

> Atypical CLL

> Stage 0

>

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  • 1 year later...

Yayyyyyyy Gloria.

Thats the greatest news possible.

PACK IT UP DRAGON.

love

don in ks

From: Gloria <gadamscan@...>Subject: [ ] Clinical Trials"Hep C Web Warriors" < >Date: Monday, October 26, 2009, 9:31 PM

Hey Gang:That post from Charlie was really interesting because of course, I'm on one of those studies.Today I got word that my last blood work showed that I was HCV DNA clear!!!! It's giving me the courage to battle through this last 3 months that's for sure.Gloria

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Oh I just love that you even have a dragon packing itself - soo funny....

Yayyyyyyy Gloria.

Thats the greatest news possible.

PACK IT UP DRAGON.

love

don in ks

From: Gloria <gadamscan (DOT) ca>Subject: [ ] Clinical Trials"Hep C Web Warriors" < >Date: Monday, October 26, 2009, 9:31 PM

Hey Gang:That post from Charlie was really interesting because of course, I'm on one of those studies.Today I got word that my last blood work showed that I was HCV DNA clear!!!! It's giving me the courage to battle through this last 3 months that's for sure.Gloria

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

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

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Hi Gloria

Ive got a feeling your gonna beat all this HCV crap youve been going through.

I added your email to your 'personal story' - part 4.

Heres a couple of sites where you can add free animations to your emails too.

http://www.bestanimations.com/ <--- click here

http://www.heathersanimations.com/ <--- click here

- right click on the animation

click save

- right click on the body of your email

click paste

love

don in ks

From: Gloria <gadamscan (DOT) ca>Subject: [ ] Clinical Trials"Hep C Web Warriors" < >Date: Monday, October 26, 2009, 9:31 PM

Hey Gang:That post from Charlie was really interesting because of course, I'm on one of those studies.Today I got word that my last blood work showed that I was HCV DNA clear!!!! It's giving me the courage to battle through this last 3 months that's for sure.Gloria

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

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

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Gloria,

That's sooo wonderful.Yes once I find out I cleared the side effects and worring about being on treatment just don't matter...knowing your body is fighting and winning makes it all worth the while. Thanks for sharing you made my day. Pam

[ ] Clinical Trials

Hey Gang:That post from Charlie was really interesting because of course, I'm on one of those studies.Today I got word that my last blood work showed that I was HCV DNA clear!!!! It's giving me the courage to battle through this last 3 months that's for sure.Gloria

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Gloria,

Im soooo happy for you Im in tears, YOU DID IT! And to hell with all of those people who werent there for you, because YOU did it, You give me hope as you know im in the same protocol as you, (Non Responder) The next few months you will do on cloud nine. You made my day too. GOD is Good!

betty

From: pam miller <pammango@...> Sent: Tue, October 27, 2009 6:03:37 AMSubject: Re: [ ] Clinical Trials

Gloria,

That's sooo wonderful.Yes once I find out I cleared the side effects and worring about being on treatment just don't matter...knowing your body is fighting and winning makes it all worth the while. Thanks for sharing you made my day. Pam

[ ] Clinical Trials

Hey Gang:That post from Charlie was really interesting because of course, I'm on one of those studies.Today I got word that my last blood work showed that I was HCV DNA clear!!!! It's giving me the courage to battle through this last 3 months that's for sure.Gloria

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That is SOOO Great!! Yay!!!

>

> Hey Gang:

>

> That post from Charlie was really interesting because of course, I'm on one of

those studies.

>

> Today I got word that my last blood work showed that I was HCV DNA clear!!!!

It's giving me the courage to battle through this last 3 months that's for sure.

>

> Gloria

>

>

>

> __________________________________________________________________

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

favourite sites. Download it now

> http://ca.toolbar..

>

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  • 2 months later...

thank-you all for your input and time in responding to my questions and concerns. its nice to have a buddy group in this trying time of life. it seems any course of action has risks and benefits and we hope we all choose correctly for our individual circumstances. thanks for being wonderful, caring people. best of luck, steve Clinical trials > I don’t pretend to have any definitive answers as to how best > improve the process of testing new therapies in people with > medical issues while simultaneously insuring that the studies > are reasonable, that safety issues are not overlooked and that > patients are not “shut out” from trying potentially beneficial > therapies because of multiple bureaucratic and cost issues. > There are, however, issues that must be carefully understood.> > Dr. Furman has correctly pointed out that pharmaceutical > companies will always watch their bottom line. It is axiomatic > that under the current ground rules no studies will be > undertaken unless the potential economic gains exceed the > probable developmental costs. This behavior, while logical on > the part of the industry creates several dynamics which do not > necessarily serve patients well.> > There is no incentive for pharmaceutical companies to compare > new drugs “head to head” with well established drugs because of > the risk of an adverse economic event. By the same token, > pharmaceutical companies and medical device companies have every > incentive to gain approval for their products utilizing the > least costly and most expedient means possible. The potential > risks of seeking approval of therapy with the least amount of > data necessary may not be apparent to most lay people, but I > must say that I have already observed several “breakthrough” > therapies that had to be terminated or markedly restricted in > their use because of unanticipated adverse effects which > occurred when their use was expanded to the entire population > afflicted with the targeted problem.> > Simply put, a therapy which works reasonably well with > reasonable safety in a carefully selected and carefully > monitored group of patients may have unanticipated problems of > efficacy or safety in larger, less carefully selected and > monitored groups...even to the point of causing severe and > undesirable problems for people,conceivably creating scenarios > that may be worse than the status prior to the treatment.> > For the time being the most reasonable goals to work towards are > to utilize (if possible) whatever government control(s) of > health care that will evolve from the pending legislation to try > to “centralize” the process of conducting reasonable, safe and > logical studies of new therapies and simultaneously to broaden > the horizons both of research and availability by altering the > economic dynamics involved. If we are going to pay for > things...let us all benefit!> > I am not in a position to speculate as to what the best means of > organizing effective research may be, but I often wonder what we > might learn if, in dealing with diseases such as heretofore > incurable malignancies, combinations of drugs were tried at an > earlier stage of disease (in “healthier” subjects). Such > therapies, if potentially helpful, should be more readily > available to those patients whose course is further advanced. > Such an approach, of course, would not necessarily be wise when > studying the treatment of other less life threatening medical > conditions where safety concerns and costs may be more > appropriate to consider.Under the current “rules of engagement” > these approaches will never be tried.> > >

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