Re: standard treatment versus clinical trials - MJC

[Guest guest]

Many people are in the hands of a specialist some distance away with the treatment being administered locally. But you do need that distant guy, the specialist. This is certainly feasible if you and the specialist opt for one of the standard treatments.

As for trials vs. standard treatment, this is something that the specialist and you need to decide. There are trials that are specifically open to chemo naive patients, and one of those might be interesting for you. There is always pressure on all of us to enter a trial, because that is how the science is advanced. I believe there is currently a trial with Revlimid and Rituxan for chemo nave patients that might be of interest.

The down side, I do not believe that your local guy could be involved in a trial, you would need to be working with an institution enrolled in that trial, or at least overseeing it.

Where do you live? I have no geographical info on you at all.

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

I live in Santa , California which is on the central coast. I was trying to find a good oncologist/ hematologist to work with in Santa Barbara. My husband and I are both engineers so we want to research all options and work with the CLL specialist find the best course of treatment for me when needed.

Marcia

-----Original Message-----From: [mailto: ] On Behalf Of jb50192@...Sent: Sunday, July 06, 2008 8:15 AM Subject: Re: standard treatment versus clinical trials - MJC

Many people are in the hands of a specialist some distance away with the treatment being administered locally. But you do need that distant guy, the specialist. This is certainly feasible if you and the specialist opt for one of the standard treatments.

As for trials vs. standard treatment, this is something that the specialist and you need to decide. There are trials that are specifically open to chemo naive patients, and one of those might be interesting for you. There is always pressure on all of us to enter a trial, because that is how the science is advanced. I believe there is currently a trial with Revlimid and Rituxan for chemo nave patients that might be of interest.

The down side, I do not believe that your local guy could be involved in a trial, you would need to be working with an institution enrolled in that trial, or at least overseeing it.

Where do you live? I have no geographical info on you at all.

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Larry and Marcia,

My wife was dx in 1991 and started tx in 2001. She sees a local hem/onc for all the regular treatment.

Even though we live in Modesto, as you know it is even a greater distance than the Central Coast, she has been seen by Dr. Kipps in La Jolla. He is the chair of the CLL Consortium and is not only a world leading researcher in CLL but is the best clinical doc I have ever met.

You might consider establishing with a local hem/onc and seeing either Dr. Kipps or Dr. Castor at UCSD. The latest testing and treatment can be discussed and most of the time you can receive the treatment with your local doc. The local doc should be happy to work with you and Dr. Kipps to give you the best of both worlds.

Good health and good luck,

Dan Hill

RE: standard treatment versus clinical trials - MJC

I live in Santa , California which is on the central coast. I was trying to find a good oncologist/ hematologist to work with in Santa Barbara. My husband and I are both engineers so we want to research all options and work with the CLL specialist find the best course of treatment for me when needed.

Marcia

-----Original Message-----From: [mailto: ] On Behalf Of jb50192aolSent: Sunday, July 06, 2008 8:15 AM Subject: Re: standard treatment versus clinical trials - MJC

Many people are in the hands of a specialist some distance away with the treatment being administered locally. But you do need that distant guy, the specialist. This is certainly feasible if you and the specialist opt for one of the standard treatments.

As for trials vs. standard treatment, this is something that the specialist and you need to decide. There are trials that are specifically open to chemo naive patients, and one of those might be interesting for you. There is always pressure on all of us to enter a trial, because that is how the science is advanced. I believe there is currently a trial with Revlimid and Rituxan for chemo nave patients that might be of interest.

The down side, I do not believe that your local guy could be involved in a trial, you would need to be working with an institution enrolled in that trial, or at least overseeing it.

Where do you live? I have no geographical info on you at all.

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

()There is always pressure on all of us to enter a trial, because

that is how the science is advanced.

Isn't that the truth.

I was dx in 2000 with SCLL and have been on W & W .

Clincal trials get a big push.

I have always thought I would take standard FR first and a clinical

trial on relapse.

Any thoughts on that one?

Gotta save those big guns.

You're only chemo naive once.

evelyn

[Guest guest]

Marcia,

I trained with a Gregg Newman, who is not a CLL specialist, but an

excellent oncologist/hematologist in Santa Barbara. He is at the

Sansum Clinic at 805-898-3270. He is very open and honest and would

absolute want you both to be involved in all decisions.

Rick Furman, MD

>

> I live in Santa , California which is on the central coast. I

was

> trying to find a good oncologist/ hematologist to work with in Santa

> Barbara. My husband and I are both engineers so we want to

research all

> options and work with the CLL specialist find the best course of

> treatment for me when needed.

> Marcia

>

> Re: standard treatment versus clinical trials -

MJC

>

>

>

>

>

> Many people are in the hands of a specialist some distance away

with the

> treatment being administered locally. But you do need that distant

guy,

> the specialist. This is certainly feasible if you and the

specialist opt

> for one of the standard treatments.

>

> As for trials vs. standard treatment, this is something that the

> specialist and you need to decide. There are trials that are

> specifically open to chemo naive patients, and one of those might be

> interesting for you. There is always pressure on all of us to enter

a

> trial, because that is how the science is advanced. I believe there

is

> currently a trial with Revlimid and Rituxan for chemo nave patients

that

> might be of interest.

>

> The down side, I do not believe that your local guy could be

involved in

> a trial, you would need to be working with an institution enrolled

in

> that trial, or at least overseeing it.

>

> Where do you live? I have no geographical info on you at all.

>

>

>

>

>

>

> _____

>

> Gas prices getting you down? Search AOL Autos for fuel-efficient

used

> <http://autos.aol.com/used?ncid=aolaut00050000000007> cars.

>

[Guest guest]

I think this is an incredibly important question. Its answer is

straight forward, except in reality. As someone who focuses on

clinical trials, my goal is to have a clinical trial availabe whenever

there is a need for better therapy. This in essence means whenever

somone cannot be cured without any risks of toxicities or other

problems.

By this viewpoint, almost everyone should be on a clinical trial, as we

need to do much better in taking care of our patients.

I would like to emphasize that not all clinical trials are about new

drugs. Some clinical trials are attempting to figure out better means

for using current therapies. An example of this is treating patients

with unmutated immunoglobulin genes (IgVH). The strategy here is that

these patients will mostly progress and require therapy in a relatively

shorter time. There are theoretical advantages to treating early, such

as: 1) prevention of drug resistant clones from developing; 2)

treatment when better tolerated by the patients; and 3) treatment when

a smaller amount of disease is present, allowing for better eradication.

These advantages may or may not prove to be real. It is important to

remember that the " watch and wait " approach is based upon clinical

trials from the 1980s when we could not discern high from low risk

disease. Benefits in a group of patients with high-risk disease could

have been lost in the mix. We also did not have as effective therapy

then as we now have. This is therefore, a very important question to

revisit. On the flip side, it is important to remember that there was

no disadvantage to early therapy in those studies from the 1980s, so it

is unlikely that there would be a disadvantage here.

Ultimately, we do not know the answers unitl we perform the clinical

trials. Most clinical trials will be to benefit the participants. The

patients receiving new drugs are those who either have not responded to

standard therapies or are trying to avoid toxicities of standard

therapies. One of our trials is studying lenalidomide plus rituximab

in previously untreated patients. The hope is that lenalidomide (in

low-doses) is safe, non-toxic, and avoids chemotherapy. Why not

attempt to delay chemotherapy as long as possible. This is a trial for

patients who have the option of FR or FCR or chlorambucil, but we are

hoping to improve upon these therpies by creating equally effective

therapies with less toxicity.

Rick Furman, MD

>

> ()There is always pressure on all of us to enter a trial, because

> that is how the science is advanced.

>

> Isn't that the truth.

> I was dx in 2000 with SCLL and have been on W & W .

> Clincal trials get a big push.

> I have always thought I would take standard FR first and a clinical

> trial on relapse.

> Any thoughts on that one?

>

> Gotta save those big guns.

> You're only chemo naive once.

>

> evelyn

>

[Guest guest]

Dr Furman,

Thank you so very much for your insight, honesty and the Dr Norman referral. You can't believe how much your email helps with these tough decisions.

Sincerely,

Marcia Crass

-----Original Message-----From: [mailto: ] On Behalf Of rrfmanSent: Sunday, July 06, 2008 6:13 PM Subject: Re: standard treatment versus clinical trials - MJC

I think this is an incredibly important question. Its answer is straight forward, except in reality. As someone who focuses on clinical trials, my goal is to have a clinical trial availabe whenever there is a need for better therapy. This in essence means whenever somone cannot be cured without any risks of toxicities or other problems.By this viewpoint, almost everyone should be on a clinical trial, as we need to do much better in taking care of our patients.I would like to emphasize that not all clinical trials are about new drugs. Some clinical trials are attempting to figure out better means for using current therapies. An example of this is treating patients with unmutated immunoglobulin genes (IgVH). The strategy here is that these patients will mostly progress and require therapy in a relatively shorter time. There are theoretical advantages to treating early, such as: 1) prevention of drug resistant clones from developing; 2) treatment when better tolerated by the patients; and 3) treatment when a smaller amount of disease is present, allowing for better eradication.These advantages may or may not prove to be real. It is important to remember that the "watch and wait" approach is based upon clinical trials from the 1980s when we could not discern high from low risk disease. Benefits in a group of patients with high-risk disease could have been lost in the mix. We also did not have as effective therapy then as we now have. This is therefore, a very important question to revisit. On the flip side, it is important to remember that there was no disadvantage to early therapy in those studies from the 1980s, so it is unlikely that there would be a disadvantage here.Ultimately, we do not know the answers unitl we perform the clinical trials. Most clinical trials will be to benefit the participants. The patients receiving new drugs are those who either have not responded to standard therapies or are trying to avoid toxicities of standard therapies. One of our trials is studying lenalidomide plus rituximab in previously untreated patients. The hope is that lenalidomide (in low-doses) is safe, non-toxic, and avoids chemotherapy. Why not attempt to delay chemotherapy as long as possible. This is a trial for patients who have the option of FR or FCR or chlorambucil, but we are hoping to improve upon these therpies by creating equally effective therapies with less toxicity.Rick Furman, MD>> ()There is always pressure on all of us to enter a trial, because > that is how the science is advanced.> > Isn't that the truth.> I was dx in 2000 with SCLL and have been on W & W .> Clincal trials get a big push.> I have always thought I would take standard FR first and a clinical > trial on relapse.> Any thoughts on that one?> > Gotta save those big guns.> You're only chemo naive once.> > evelyn>

[Guest guest]

Question for Dr. Furman:

Thank you for your explanation for the necessity of clinical trials

I have a question:

(Dr. Furman)

" One of our trials is studying lenalidomide plus rituximab

in previously untreated patients. The hope is that lenalidomide (in

low-doses) is safe, non-toxic, and avoids chemotherapy. Why not

attempt to delay chemotherapy as long as possible. This is a trial for

patients who have the option of FR or FCR or chlorambucil, but we are

hoping to improve upon these therapies by creating equally effective

therapies with less toxicity. "

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

So is the Revlimid and Rituxan treatment considered less toxic than

FR or FCR?

And is not considered chemotherapy?

Thank you.

evelyn

[Guest guest]

Revlimid is not considered chemotherapy. Sometimes the line between

chemotherapy and non-chemotherapy is hard to define, but in general,

agents that do not non-specifically kill cells are not chemotherapy

and are much less toxic.

Revlimid is less toxic than FR or FCR.

>

> Question for Dr. Furman:

>

> Thank you for your explanation for the necessity of clinical trials

> I have a question:

> (Dr. Furman)

> " One of our trials is studying lenalidomide plus rituximab

> in previously untreated patients. The hope is that lenalidomide (in

> low-doses) is safe, non-toxic, and avoids chemotherapy. Why not

> attempt to delay chemotherapy as long as possible. This is a trial

for

> patients who have the option of FR or FCR or chlorambucil, but we

are

> hoping to improve upon these therapies by creating equally effective

> therapies with less toxicity. "

>

> ~~~~~~~~~~~~~~~

> So is the Revlimid and Rituxan treatment considered less toxic than

> FR or FCR?

> And is not considered chemotherapy?

>

> Thank you.

> evelyn

>