Re: Steroid Treatment and HuMax

January 7, 2008

Hi Everyone,

Wishing a Happy New Year and a 2008 full of good health to everyone! I have a couple questions I need help with. Is anyone aware of a steroid treatment that has been used successfully to bring the nodes down and is NOT as strong as the HDMP? My Onc. wants to treat with steroids to get the nodes down prior to using Rituxan to clear out the marrow and blood. He says we need a protocol that has been reviewed because although we could come up with our own, he does not think the insurance will cover it.

Additionally, does anyone know when HuMax will be available in the US? How would I find this out? I have heard this is good on large nodes also and of course less toxic than other treatments but I cannot find out when I might be able to get this treatment.

I appreciate your input on the above and also any other successful treatments anyone has done to bring the nodes down.

Thank you,

Denyse

Start the year off right. Easy ways to stay in shape in the new year.

January 7, 2008

Thank you for your prompt reply. I am in Las Vegas. It was your thought on HuMax some months ago that prompted me to discuss this with my Dr. here. I have had Rituxan and Campath previously so he couldn't find a trial that I would qualify for with HuMax.

Have you done any steroids at lower doses that you feel have worked well and if so, would you be willing to share what you think would be a good amount to start with? Do you think we are on the right track here? I have no other symptoms other than a climbing WBC at last apt. was 79k. Feeling good otherwise.

Thanks again,

Denyse

In a message dated 1/7/2008 11:16:25 A.M. Pacific Standard Time, rrfurman@... writes:

Denyse,

The use of steroids is often "cookbook", with each physician doing what they are comfortable with. The steroids are cheap and should not be an issue with insurance.

Humax-CD20 will not be availble out of clinical trials for probably 18-24 months, but it is availble at many centers on trial right now. Where are you?

Rick Furman

Re: Steroid Treatment and HuMax

> Hi Everyone, > > Wishing a Happy New Year and a 2008 full of good health to > everyone! I have > a couple questions I need help with. Is anyone aware of a steroid > treatment > that has been used successfully to bring the nodes down and is > NOT as strong as > the HDMP? My Onc. wants to treat with steroids to get the nodes > down prior > to using Rituxan to clear out the marrow and blood. He says we > need a protocol > that has been reviewed because although we could come up with our > own, he > does not think the insurance will cover it. > > Additionally, does anyone know when HuMax will be available in the > US? How > would I find this out? I have heard this is good on large nodes > also and of > course less toxic than other treatments but I cannot find out when > I might be > able to get this treatment. > > I appreciate your input on the above and also any other successful > > treatments anyone has done to bring the nodes down. > > Thank you, > Denyse > > > > > > > > > **************Start the year off right. Easy ways to stay in > shape. > http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 > Start the year off right. Easy ways to stay in shape in the new year.

January 7, 2008

Denyse,

The use of steroids is often "cookbook", with each physician doing what they are comfortable with. The steroids are cheap and should not be an issue with insurance.

Humax-CD20 will not be availble out of clinical trials for probably 18-24 months, but it is availble at many centers on trial right now. Where are you?

Rick Furman

Re: Steroid Treatment and HuMax

> Hi Everyone, > > Wishing a Happy New Year and a 2008 full of good health to > everyone! I have > a couple questions I need help with. Is anyone aware of a steroid > treatment > that has been used successfully to bring the nodes down and is > NOT as strong as > the HDMP? My Onc. wants to treat with steroids to get the nodes > down prior > to using Rituxan to clear out the marrow and blood. He says we > need a protocol > that has been reviewed because although we could come up with our > own, he > does not think the insurance will cover it. > > Additionally, does anyone know when HuMax will be available in the > US? How > would I find this out? I have heard this is good on large nodes > also and of > course less toxic than other treatments but I cannot find out when

> I might be > able to get this treatment. > > I appreciate your input on the above and also any other successful > > treatments anyone has done to bring the nodes down. > > Thank you, > Denyse > > > > > > > > > **************Start the year off right. Easy ways to stay in > shape. > http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 >

January 7, 2008

Denyse,

The treatment really should depend upon what are the goals. I have

use prednisone 60 mg daily or dexamethasone 10 mg daily. It depends

also on how refractory you are. The Humax-CD20 trial is meant for

the most refractory of patients, so you need to have had Campath to have

gone on it. If you have had fludarabine as well, and had a poor

response or short response, then you would qualify for the trial.

Rick Furman

At 02:23 PM 1/7/2008, you wrote:

Thank you for your

prompt reply. I am in Las Vegas. It was your thought on HuMax some months

ago that prompted me to discuss this with my Dr. here. I have had Rituxan

and Campath previously so he couldn't find a trial that I would qualify

for with HuMax.

Have you done any steroids at lower doses that you feel have worked well

and if so, would you be willing to share what you think would be a good

amount to start with? Do you think we are on the right track here? I have

no other symptoms other than a climbing WBC at last apt. was 79k. Feeling

good otherwise.

Thanks again,

Denyse

In a message dated 1/7/2008 11:16:25 A.M. Pacific Standard Time,

rrfurman@... writes:

Denyse,

The use of steroids is often " cookbook " , with each

physician doing what they are comfortable with. The steroids are

cheap and should not be an issue with insurance.

Humax-CD20 will not be availble out of clinical trials for probably

18-24 months, but it is availble at many centers on trial right

now. Where are you?

Rick Furman

Re: Steroid Treatment and HuMax

> Hi Everyone,

>

> Wishing a Happy New Year and a 2008 full of good health to

> everyone! I have

> a couple questions I need help with. Is anyone aware of a

steroid

> treatment

> that has been used successfully to bring the nodes down

and is

> NOT as strong as

> the HDMP? My Onc. wants to treat with steroids to get the

nodes

> down prior

> to using Rituxan to clear out the marrow and blood. He

says we

> need a protocol

> that has been reviewed because although we could come up

with our

> own, he

> does not think the insurance will cover it.

>

> Additionally, does anyone know when HuMax will be available in

the

> US? How

> would I find this out? I have heard this is good on large nodes

> also and of

> course less toxic than other treatments but I cannot find out

when

> I might be

> able to get this treatment.

>

> I appreciate your input on the above and also any other

successful

>

> treatments anyone has done to bring the nodes down.

>

> Thank you,

> Denyse

>

> **************Start the year off right. Easy ways to stay

in

> shape.

>

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

>

Start the year off right. Easy ways to stay in shape in the new year.

January 7, 2008

Denyse - climbing WBC is not necessarily a serious problem - they look at "doubling time", i.e. how quickly is it climbing - "doubluing time of less than 4-6 months is usually cause for attention -

Re: Steroid Treatment and HuMax

Thank you for your prompt reply. I am in Las Vegas. It was your thought on HuMax some months ago that prompted me to discuss this with my Dr. here. I have had Rituxan and Campath previously so he couldn't find a trial that I would qualify for with HuMax.

Have you done any steroids at lower doses that you feel have worked well and if so, would you be willing to share what you think would be a good amount to start with? Do you think we are on the right track here? I have no other symptoms other than a climbing WBC at last apt. was 79k. Feeling good otherwise.

Thanks again,

Denyse

In a message dated 1/7/2008 11:16:25 A.M. Pacific Standard Time, rrfurman@... writes:

Denyse,

The use of steroids is often "cookbook", with each physician doing what they are comfortable with. The steroids are cheap and should not be an issue with insurance.

Humax-CD20 will not be availble out of clinical trials for probably 18-24 months, but it is availble at many centers on trial right now. Where are you?

Rick Furman

Re: Steroid Treatment and HuMax

> Hi Everyone,

>

> Wishing a Happy New Year and a 2008 full of good health to

> everyone! I have

> a couple questions I need help with. Is anyone aware of a steroid

> treatment

> that has been used successfully to bring the nodes down and is

> NOT as strong as

> the HDMP? My Onc. wants to treat with steroids to get the nodes

> down prior

> to using Rituxan to clear out the marrow and blood. He says we

> need a protocol

> that has been reviewed because although we could come up with our

> own, he

> does not think the insurance will cover it.

>

> Additionally, does anyone know when HuMax will be available in the

> US? How

> would I find this out? I have heard this is good on large nodes

> also and of

> course less toxic than other treatments but I cannot find out when

> I might be

> able to get this treatment.

>

> I appreciate your input on the above and also any other successful

>

> treatments anyone has done to bring the nodes down.

>

> Thank you,

> Denyse

>

> **************Start the year off right. Easy ways to stay in

> shape.

> http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

>

Start the year off right. Easy ways to stay in shape in the new year.

More new features than ever. Check out the new AOL Mail!

January 8, 2008

As a newcomer to the group I'm still learning. Dr. Furman, what are

refractory patients? Also, I had been told that there is no remission

with CLL, yet I've been reading about partial and complete remissions.

How are those measured?

Denyse - is there a trial at UCLA? I've met several patients from Las

Vegas while in the treatment room. If there is a trial available there

or you just want to get a second opinion I'd be happy to connect with

you regarding doctors, transportation, etc. Pat

>

> >Thank you for your prompt reply. I am in Las Vegas. It was your

thought on

> >HuMax some months ago that prompted me to discuss this with my Dr.

here. I

> >have had Rituxan and Campath previously so he couldn't find a trial

that I

> >would qualify for with HuMax.

> >

> >Have you done any steroids at lower doses that you feel have worked

well

> >and if so, would you be willing to share what you think would be a

good

> >amount to start with? Do you think we are on the right track here?

I have

> >no other symptoms other than a climbing WBC at last apt. was 79k.

Feeling

> >good otherwise.

> >

> >Thanks again,

> >Denyse

> >

> >In a message dated 1/7/2008 11:16:25 A.M. Pacific Standard Time,

> >rrfurman@... writes:

> >

> >Denyse,

> >

> >The use of steroids is often " cookbook " , with each physician doing

what

> >they are comfortable with. The steroids are cheap and should not

be an

> >issue with insurance.

> >

> >Humax-CD20 will not be availble out of clinical trials for probably

18-24

> >months, but it is availble at many centers on trial right now.

Where are you?

> >

> >Rick Furman

> >

> > Re: Steroid Treatment and HuMax

> >

> > > Hi Everyone,

> > >

> > > Wishing a Happy New Year and a 2008 full of good health to

> > > everyone! I have

> > > a couple questions I need help with. Is anyone aware of a steroid

> > > treatment

> > > that has been used successfully to bring the nodes down and is

> > > NOT as strong as

> > > the HDMP? My Onc. wants to treat with steroids to get the nodes

> > > down prior

> > > to using Rituxan to clear out the marrow and blood. He says we

> > > need a protocol

> > > that has been reviewed because although we could come up with our

> > > own, he

> > > does not think the insurance will cover it.

> > >

> > > Additionally, does anyone know when HuMax will be available in the

> > > US? How

> > > would I find this out? I have heard this is good on large nodes

> > > also and of

> > > course less toxic than other treatments but I cannot find out when

> > > I might be

> > > able to get this treatment.

> > >

> > > I appreciate your input on the above and also any other successful

> > >

> > > treatments anyone has done to bring the nodes down.

> > >

> > > Thank you,

> > > Denyse

> > >

> > > **************Start the year off right. Easy ways to stay in

> > > shape.

> > >

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

> > >

> >

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

> >Start the year off right.

>

><http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489>Easy

> > ways to stay in shape in the new year.

> >

>

January 9, 2008

Pat,

Welcome to the group.

There is much information to be learned and you will learn it in

time. Try not to become overwhelmed initially. CLL patients

do achieve remissions. Remissions can be either PR or

CR. Technically, PR and CR stand for partial response and completer

response. A remission is really meant to mean when you are in a

CR. The criteria used for PR and CR are based upon the presence of

lymph nodes, CLL related symptoms, and blood counts. Patients who

do not respond, might have stable disease (SD) or progressive disease

(PD) depending upon whether their disease worsens further.

Refractory describes patients who do not respond (therefore have SD or

PD) to a treatment or who respond but then progress in less then six

months.

I will post a listing of the response criteria in a separate

post.

Rick Furman, MD

At 02:20 AM 1/9/2008, you wrote:

As a newcomer to the group I'm

still learning. Dr. Furman, what are

refractory patients? Also, I had been told that there is no

remission

with CLL, yet I've been reading about partial and complete

remissions.

How are those measured?

Denyse - is there a trial at UCLA? I've met several patients from

Las

Vegas while in the treatment room. If there is a trial available

there

or you just want to get a second opinion I'd be happy to connect

with

you regarding doctors, transportation, etc. Pat

>

> >Thank you for your prompt reply. I am in Las Vegas. It was

your

thought on

> >HuMax some months ago that prompted me to discuss this with my

Dr.

here. I

> >have had Rituxan and Campath previously so he couldn't find a

trial

that I

> >would qualify for with HuMax.

> >

> >Have you done any steroids at lower doses that you feel have

worked

well

> >and if so, would you be willing to share what you think would be

a

good

> >amount to start with? Do you think we are on the right track

here?

I have

> >no other symptoms other than a climbing WBC at last apt. was

79k.

Feeling

> >good otherwise.

> >

> >Thanks again,

> >Denyse

> >

> >In a message dated 1/7/2008 11:16:25 A.M. Pacific Standard Time,

> >rrfurman@... writes:

> >

> >Denyse,

> >

> >The use of steroids is often " cookbook " , with each

physician doing

what

> >they are comfortable with. The steroids are cheap and should

not

be an

> >issue with insurance.

> >

> >Humax-CD20 will not be availble out of clinical trials for

probably

18-24

> >months, but it is availble at many centers on trial right now.

Where are you?

> >

> >Rick Furman

> >

> > Re: Steroid Treatment and HuMax

> >

> > > Hi Everyone,

> > >

> > > Wishing a Happy New Year and a 2008 full of good health

to

> > > everyone! I have

> > > a couple questions I need help with. Is anyone aware of a

steroid

> > > treatment

> > > that has been used successfully to bring the nodes down

and is

> > > NOT as strong as

> > > the HDMP? My Onc. wants to treat with steroids to get the

nodes

> > > down prior

> > > to using Rituxan to clear out the marrow and blood. He

says we

> > > need a protocol

> > > that has been reviewed because although we could come up

with our

> > > own, he

> > > does not think the insurance will cover it.

> > >

> > > Additionally, does anyone know when HuMax will be

available in the

> > > US? How

> > > would I find this out? I have heard this is good on large

nodes

> > > also and of

> > > course less toxic than other treatments but I cannot find

out when

> > > I might be

> > > able to get this treatment.

> > >

> > > I appreciate your input on the above and also any other

successful

> > >

> > > treatments anyone has done to bring the nodes down.

> > >

> > > Thank you,

> > > Denyse

> > >

> > > **************Start the year off right. Easy ways to stay

in

> > > shape.

> > >

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

> > >

> >

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

> >Start the year off right.

>

><http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489>Easy

> > ways to stay in shape in the new year.

> >

>

January 10, 2008

Hi , Dr. Furman and others,

Based on what I read today from Dr. Furman I would be considered refractory with progressive disease. Dr. Furman, you mention I would have to be refractory to Campath to qualify for the trial with HuMax and I am. So, how do I find out more on this?

Here is my history in a brief summary:

Diag. 12/04 @ age 43, Zap 70+, CD38 -, unmutated with 98% Bone Marrow Involvement, WBC 28.6. No blood conditions yet like anemia, AIHA or anything. Always had Lymph Node involvement since diagnosis. 2cm is where they started at diagnosis in neck, underarm, groin etc.

Rituxan was administered first, 8 weeks, once weekly. WBC 28.6 down to 4.0. No palpable nodes.

8 months later, nodes back, WBC climbing to 40.0. Rituxan again, 4 weeks. PR with still small nodes, WBC down to 5.0.

Only 6 months later, WBC climbed back to 60.7 and nodes growing. Chickened out of HDMP and FCR and went for only R again. Lasted only 6 weeks. WBC came down great to 4.0 but climbed again by 6 weeks to 30 and nodes no change, still had them. So...we decided to go with Campath. Local onc didn't think nodes were too big for it to work and thought it was better for me than HDMP.

Campath + Rituxan was administered with C+R weeks 1-4 then only Campath for the remaining weeks. We did a MRD test every 4 weeks and received the coveted "no cancer cells detected" at week 4. Onc. wanted me to continue to get more Campath for an additional MRD test 4 weeks later so Campath was cont. 4 more weeks. Same results with MRD at week 8 and although I still had small nodes, we considered ourselves out of the woods, great response and life looked good. This was June 07. In June WBC was at 6.5.

Only 3 months later-Sept. 07 nodes grown back bigger, WBC at 65 UGH! W & W through the holidays and now time is to treat but with what? I have no B symptoms other than the large linebacker neck, large nodes everywhere. Feel good. Last Onc. visit last week, WBC 79.8. I would like to do HuMax or am trying to come up with HDMP half plan. I always respond to medicine more than expected. I can only take 1/4 dose of Benadryl at treatments for example as I am very sensitive to medication. This is what led me to the thought of using less steroids than those recommended with HDMP. Local Dr. thinks its good to try it. I definitely need something to bring these nodes down.

So, we are looking for a lower dose steroid treatment, along with Rituxan or HuMax. My WBC has gone from 6.5 at the end of June to 80 currently. I guess this is considered the doubling time??? If so I would say it has definitely doubled!!!

Okay, now back to you...what ideas does anyone have. I am worried I might be recruited by the Patriots for Superbowl soon with this neck. (you have to keep a sense of humor always!) As a Pat's fan, of course they are going to the Superbowl!!!

Thanks each of you and Dr. Furman. This list is providing me with great ideas and more importantly right now, great comfort knowing I am not just stuck in my little neck of the woods here in Vegas with no outside help! You are all wonderful, thank you.

Denyse

In a message dated 1/7/2008 2:54:37 P.M. Pacific Standard Time, jb50192@... writes:

Denyse - in other words, we need your hidtory -as I recall you gave it once, but I don't have it here with me, I'm not at home - Best, Re: Steroid Treatment and HuMax

Denyse,The treatment really should depend upon what are the goals. I have use prednisone 60 mg daily or dexamethasone 10 mg daily. It depends also on how refractory you are. The Humax-CD20 trial is meant for the most refractory of patients, so you need to have had Campath to have gone on it. If you have had fludarabine as well, and had a poor response or short response, then you would qualify for the trial.Rick FurmanAt 02:23 PM 1/7/2008, you wrote:

Thank you for your prompt reply. I am in Las Vegas. It was your thought on HuMax some months ago that prompted me to discuss this with my Dr. here. I have had Rituxan and Campath previously so he couldn't find a trial that I would qualify for with HuMax. Have you done any steroids at lower doses that you feel have worked well and if so, would you be willing to share what you think would be a good amount to start with? Do you think we are on the right track here? I have no other symptoms other than a climbing WBC at last apt. was 79k. Feeling good otherwise. Thanks again,Denyse In a message dated 1/7/2008 11:16:25 A.M. Pacific Standard Time, rrfurmanmed (DOT) cornell.edu writes:

Denyse,

The use of steroids is often "cookbook", with each physician doing what they are comfortable with. The steroids are cheap and should not be an issue with insurance.

Humax-CD20 will not be availble out of clinical trials for probably 18-24 months, but it is availble at many centers on trial right now. Where are you?

Rick Furman

Re: Steroid Treatment and HuMax

> Hi Everyone,

>

> Wishing a Happy New Year and a 2008 full of good health to

> everyone! I have

> a couple questions I need help with. Is anyone aware of a steroid

> treatment

> that has been used successfully to bring the nodes down and is

> NOT as strong as

> the HDMP? My Onc. wants to treat with steroids to get the nodes

> down prior

> to using Rituxan to clear out the marrow and blood. He says we

> need a protocol

> that has been reviewed because although we could come up with our

> own, he

> does not think the insurance will cover it.

>

> Additionally, does anyone know when HuMax will be available in the

> US? How

> would I find this out? I have heard this is good on large nodes

> also and of

> course less toxic than other treatments but I cannot find out when

> I might be

> able to get this treatment.

>

> I appreciate your input on the above and also any other successful

>

> treatments anyone has done to bring the nodes down.

>

> Thank you,

> Denyse

>

> **************Start the year off right. Easy ways to stay in

> shape.

> http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

>

Start the year off right. Easy ways to stay in shape in the new year.

More new features than ever. Check out the new AOL Mail!

Start the year off right. Easy ways to stay in shape in the new year.

January 10, 2008

Denyse,

Yes, and no. You do qualify as refractory because your disease

returned quickly, but it does not sound as if you received a full

course of Campath. If someone has persistent lymphadenopathy and

negative four-color flow of the peripheral blood, it is not a CR

because of the lymph nodes. It is unclear why many physicians are

using the four color flow in the peripheral blood to follow disease.

Thus, the rapid increase off treatment might be just because your

disease is not being adequately treated.

Addtionally, you have not received fludarabine as of yet.

Fludarabine (or pentostatin) remain the mainstay of treatment for all

patients. The term refractory is of less importance when someone has

not been treated with fludarabine.

The Humax-CD20 trial requires patient to be refractory to fludarabine

and treated with Campath or refractory to fludarabine and have bulky

lymph nodes, which would indicate a low likelihood of responding to

Campath. You do not qualify for the Humax trial because

(fortunately!) you do still have excellent treatment options.

Rick Furman, MD

>

> Thank you for your prompt reply. I am in Las Vegas. It was your

thought on

> HuMax some months ago that prompted me to discuss this with my Dr.

here. I

> have had Rituxan and Campath previously so he couldn't find a

trial that I would

> qualify for with HuMax.

>

> Have you done any steroids at lower doses that you feel have

worked well and

> if so, would you be willing to share what you think would be a

good amount

> to start with? Do you think we are on the right track here? I have

no other

> symptoms other than a climbing WBC at last apt. was 79k. Feeling

good

> otherwise.

>

> Thanks again,

> Denyse

>

> In a message dated 1/7/2008 11:16:25 A.M. Pacific Standard Time,

> _rrfurman@...@me_ (mailto:rrfurman@...) writes:

>

> Denyse,

>

> The use of steroids is often " cookbook " , with each physician doing

what they

> are comfortable with. The steroids are cheap and should not be an

issue

> with insurance.

>

> Humax-CD20 will not be availble out of clinical trials for

probably 18-24

> months, but it is availble at many centers on trial right now.

Where are you?

>

> Rick Furman

>

> Re: Steroid Treatment and HuMax

>

> > Hi Everyone,

>

> >

>

> > Wishing a Happy New Year and a 2008 full of good health to

>

> > everyone! I have

>

> > a couple questions I need help with. Is anyone aware of a

steroid

>

> > treatment

>

> > that has been used successfully to bring the nodes down and is

>

> > NOT as strong as

>

> > the HDMP? My Onc. wants to treat with steroids to get the nodes

>

> > down prior

>

> > to using Rituxan to clear out the marrow and blood. He says we

>

> > need a protocol

>

> > that has been reviewed because although we could come up with

our

>

> > own, he

>

> > does not think the insurance will cover it.

>

> >

>

> > Additionally, does anyone know when HuMax will be available in

the

>

> > US? How

>

> > would I find this out? I have heard this is good on large nodes

>

> > also and of

>

> > course less toxic than other treatments but I cannot find out

when

>

> > I might be

>

> > able to get this treatment.

>

> >

>

> > I appreciate your input on the above and also any other

successful

>

> >

>

> > treatments anyone has done to bring the nodes down.

>

> >

>

> > Thank you,

>

> > Denyse

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > ************ ************<WBR>**Start t Easy ways to stay in

>

> > shape.

>

> >

_http://body.http://body.<WBRhttp://body.<WBRhttp://body.<WBRhttp://bo

_

> (http://body.aol.com/fitness/winter-exercise?

NCID=aolcmp00300000002489)

>

> >

>

> ____________________________________

> Start the year off right. _Easy ways to stay in shape_

> (http://body.aol.com/fitness/winter-exercise?

NCID=aolcmp00300000002489) in the new year.

>

> ____________________________________

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January 11, 2008

Thanks Denyse and Dr. Fuman for your posts, it is very helpful to me at this moment. My blood counts are good at the moment, but have multiple nodes all over three months after finishing Fluradabine, rituximab and HDMP. My first round of Fluradabine and rituximab did absolutely nothing to my counts or nodes that was the reason we started HDMP on the second round, and the response was just perfect, in total I had 6 rounds of fluradabine and 5 of HDMP, we did not do a sixth one as we had no change after round 3 on the nodes.

We are talking about Campath, my understanding is that Campath is not good for reducing the nodes but given with HDMP works better.

I am seeing my NHS consultant next week and will find out the result of my BMB, CT scan and discuss the future, she is talking about Stem Cell transplant, which although I consider myself old for that since she is keen for me to see the transplant professor in London, I will go alone with her views until I can make up my mind.

although it would have been nice to have a CR having a partial remission with such good quality of life suits me well.

Thanks again and best regards

Chonette (UK)dx 10-02 (aged 57)unmutated, CD38 20%, ZAP70 9%, 2004 Prednisolone 8 weeks 50 mg. a day, 2005 Prednisolone 8 weeks 50 mg.a day, followed bylow doses chlorambucil (2 mg.), 2006 Rituximab and low doses chlorambucil (6 mg. a day 14 days on 14 days off) 6 rounds, 2007 Low doses Rituximab, 2007 Fluradabine Lite, HDMP,. Rituximab 200 mg. monthly (5 rounds)Partial Remission, multiple pea size nodes on neck,feeling wellthinking about what's next

Re: Steroid Treatment and HuMax

Posted by: "rrfman" rrfurman@... rrfman

Thu Jan 10, 2008 4:09 pm (PST)

Denyse,Yes, and no. You do qualify as refractory because your disease returned quickly, but it does not sound as if you received a full course of Campath. If someone has persistent lymphadenopathy and negative four-color flow of the peripheral blood, it is not a CR because of the lymph nodes. It is unclear why many physicians are using the four color flow in the peripheral blood to follow disease. Thus, the rapid increase off treatment might be just because your disease is not being adequately treated.Addtionally, you have not received fludarabine as of yet. Fludarabine (or pentostatin) remain the mainstay of treatment for all patients. The term refractory is of less importance when someone has not been treated with fludarabine.The Humax-CD20 trial requires patient to be refractory to fludarabine and treated with Campath or refractory to fludarabine and have bulky lymph nodes, which would indicate a low likelihood of responding to Campath. You do not qualify for the Humax trial because (fortunately!) you do still have excellent treatment options.Rick Furman, MD

January 11, 2008

Dr. Furman,

Thanks so much. I had a total of 9 weeks of Campath, Sub Q 3x weekly. Is this considered a full dose? Also, do you have any idea when I can get HuMax outside of a trial?

One last question, My local Onc. has recommended Pentostatin also as a possibility. Do you think that would be better than just the steroids and Rituxan? Is there any harm in trying the steroids first and if they don't last then going to PCR or something like that?

Appreciate all the comments from everyone. Wish I could do the HuMax trial. I'd be there in a heartbeat!

Denyse

In a message dated 1/10/2008 4:09:52 P.M. Pacific Standard Time, rrfurman@... writes:

Denyse,Yes, and no. You do qualify as refractory because your disease returned quickly, but it does not sound as if you received a full course of Campath. If someone has persistent lymphadenopathy and negative four-color flow of the peripheral blood, it is not a CR because of the lymph nodes. It is unclear why many physicians are using the four color flow in the peripheral blood to follow disease. Thus, the rapid increase off treatment might be just because your disease is not being adequately treated.Addtionally, you have not received fludarabine as of yet. Fludarabine (or pentostatin) remain the mainstay of treatment for all patients. The term refractory is of less importance when someone has not been treated with fludarabine.The Humax-CD20 trial requires patient to be refractory to fludarabine and treated with Campath or refractory to fludarabine and have bulky lymph nodes, which would indicate a low likelihood of responding to Campath. You do not qualify for the Humax trial because (fortunately!) you do still have excellent treatment options.Rick Furman, MD> > > Thank you for your prompt reply. I am in Las Vegas. It was your thought on > HuMax some months ago that prompted me to discuss this with my Dr. here. I > have had Rituxan and Campath previously so he couldn't find a trial that I would > qualify for with HuMax.> > Have you done any steroids at lower doses that you feel have worked well and > if so, would you be willing to share what you think would be a good amount > to start with? Do you think we are on the right track here? I have no other > symptoms other than a climbing WBC at last apt. was 79k. Feeling good > otherwise. > > Thanks again,> Denyse> > In a message dated 1/7/2008 11:16:25 A.M. Pacific Standard Time, > _rrfurman@...@me_ (mailto:rrfurman@...) writes:> > > Denyse,> > > > > > > > > > > The use of steroids is often "cookbook", with each physician doing what they > are comfortable with. The steroids are cheap and should not be an issue > with insurance.> > > Humax-CD20 will not be availble out of clinical trials for probably 18-24 > months, but it is availble at many centers on trial right now. Where are you?> > > Rick Furman> > > Re: Steroid Treatment and HuMax > > > > Hi Everyone, > > > > > > Wishing a Happy New Year and a 2008 full of good health to > > > everyone! I have > > > a couple questions I need help with. Is anyone aware of a steroid > > > treatment > > > that has been used successfully to bring the nodes down and is > > > NOT as strong as > > > the HDMP? My Onc. wants to treat with steroids to get the nodes > > > down prior > > > to using Rituxan to clear out the marrow and blood. He says we > > > need a protocol > > > that has been reviewed because although we could come up with our > > > own, he > > > does not think the insurance will cover it. > > > > > > Additionally, does anyone know when HuMax will be available in the > > > US? How > > > would I find this out? I have heard this is good on large nodes > > > also and of > > > course less toxic than other treatments but I cannot find out when > > > I might be > > > able to get this treatment. > > > > > > I appreciate your input on the above and also any other successful > > > > > > treatments anyone has done to bring the nodes down. > > > > > > Thank you, > > > Denyse > > > > > > > > > > > > > > > > > > > > > > > > > > > ************ ************<WBR>**Start t Easy ways to stay in > > > shape. > > > _http://body.http://body.<WBRhttp://body.<WBRhttp://body.<WBRhttp://bo_ > (http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489) > > > > > > > > > ____________________________________> Start the year off right. _Easy ways to stay in shape_ > (http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489) in the new year. > > ____________________________________> More new features than ever. Check out the new _AOL Mail_ > (http://o.aolcdn.com/cdn.webmail.aol.com/mailtour/aol/en-us/text.htm?ncid=aolcmp00050000000003) !> > > > > > **************Start the year off right. Easy ways to stay in shape. > http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489> Start the year off right. Easy ways to stay in shape in the new year.

January 11, 2008

Pat,

Thank you so much for your offer. I have no idea if there is a trial at UCLA and I'll have to start looking online I guess. Sounds like I am not eligible for it if the criteria is the same as Dr. Furman's trial. I'll check into it and thanks again for your kindness.

Denyse

In a message dated 1/8/2008 11:20:37 P.M. Pacific Standard Time, pkennedy16@... writes:

As a newcomer to the group I'm still learning. Dr. Furman, what arerefractory patients? Also, I had been told that there is no remissionwith CLL, yet I've been reading about partial and complete remissions.How are those measured?Denyse - is there a trial at UCLA? I've met several patients from LasVegas while in the treatment room. If there is a trial available thereor you just want to get a second opinion I'd be happy to connect withyou regarding doctors, transportation, etc. Pat> > >Thank you for your prompt reply. I am in Las Vegas. It was yourthought on > >HuMax some months ago that prompted me to discuss this with my Dr.here. I > >have had Rituxan and Campath previously so he couldn't find a trialthat I > >would qualify for with HuMax.> >> >Have you done any steroids at lower doses that you feel have workedwell > >and if so, would you be willing to share what you think would be agood > >amount to start with? Do you think we are on the right track here?I have > >no other symptoms other than a climbing WBC at last apt. was 79k.Feeling > >good otherwise.> >> >Thanks again,> >Denyse> >> >In a message dated 1/7/2008 11:16:25 A.M. Pacific Standard Time, > >rrfurman@... writes:> >> >Denyse,> >> >The use of steroids is often "cookbook", with each physician doingwhat > >they are comfortable with. The steroids are cheap and should notbe an > >issue with insurance.> >> >Humax-CD20 will not be availble out of clinical trials for probably18-24 > >months, but it is availble at many centers on trial right now. Where are you?> >> >Rick Furman> >> > Re: Steroid Treatment and HuMax> >> > > Hi Everyone,> > >> > > Wishing a Happy New Year and a 2008 full of good health to> > > everyone! I have> > > a couple questions I need help with. Is anyone aware of a steroid> > > treatment> > > that has been used successfully to bring the nodes down and is> > > NOT as strong as> > > the HDMP? My Onc. wants to treat with steroids to get the nodes> > > down prior> > > to using Rituxan to clear out the marrow and blood. He says we> > > need a protocol> > > that has been reviewed because although we could come up with our> > > own, he> > > does not think the insurance will cover it.> > >> > > Additionally, does anyone know when HuMax will be available in the> > > US? How> > > would I find this out? I have heard this is good on large nodes> > > also and of> > > course less toxic than other treatments but I cannot find out when> > > I might be> > > able to get this treatment.> > >> > > I appreciate your input on the above and also any other successful> > >> > > treatments anyone has done to bring the nodes down.> > >> > > Thank you,> > > Denyse> > >> > >> > >> > >> > >> > >> > >> > >> > > **************Start the year off right. Easy ways to stay in> > > shape.> > >http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489> > >> >> >> >> >> >> >----------> >Start the year off right. >><http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489>Easy> > ways to stay in shape in the new year.> >> Start the year off right. Easy ways to stay in shape in the new year.

January 11, 2008

I'll be talking to my oncologist today. I'll ask about trials at UCLA. USC and Cedars-Sanai are also possibilities. I'll let you know what she says. Pat**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

January 11, 2008

Denyse et al,

I spoke to my oncologist today. She said that UCLA has a HuMax trial for those not yet treated. There are two in the southern California area for those who meet treatment guidelines - the one in San Diego which has already been mentioned and one being conducted by a Dr. Elmer Camacho who is in private practice in Palm Springs, who she knows and spoke highly of. I'm at UCLA often (never expected, as a devoted USC Trojan, that I'd come to love UCLA as I have) and would be happy to get more information for anyone who might be interested in what they have to offer.

Pat Kennedy**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

January 12, 2008

In a message dated 1/11/2008 10:13:37 P.M. Mountain Standard Time, pkennedy16@... writes:

would be happy to get more information for anyone who might be interested in what they have to offer.

Thanks for the offer Pat. I'm interested in treatment requirements clarification - i. e. would they accept someone who refuses Fludarabine, not ready for Campath, but has used Rituxan.

Ann

Albuquerque, NMStart the year off right. Easy ways to stay in shape in the new year.

January 12, 2008

Ann - I'll ask for more information about the UCLA trial. I've heard that the guidelines for the trial in Palm Springs if for those who've already met treatment guidelines, but the lines are not as rigid as for the San Diego study. Pat**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

January 18, 2008

Hi Ann,

I too am interested in this and will let the group know if I find any information. Maybe I missed the answer to this already but I have not seen anything come across if anyone knows.

I don't want to use FR or FCR until it is my last option and unfortunately as Dr. Furman pointed out they don't consider us refractory unless we have had this treatment and failed it. I hope we are able to get the HuMax without clinical trial very soon. It makes things difficult when you know what you want to treat with but they won't let us have it.

Thanks everyone for any info.,

Denyse

In a message dated 1/12/2008 6:31:13 P.M. Pacific Standard Time, Sam87107@... writes:

In a message dated 1/11/2008 10:13:37 P.M. Mountain Standard Time, pkennedy16aol writes:

would be happy to get more information for anyone who might be interested in what they have to offer.

Thanks for the offer Pat. I'm interested in treatment requirements clarification - i. e. would they accept someone who refuses Fludarabine, not ready for Campath, but has used Rituxan.

Ann

Albuquerque, NM

Start the year off right. Easy ways to stay in shape in the new year.

January 18, 2008

Thank you Dr. Furman. Sometimes it gets frustrating on the patient end but you are absolutely correct! We have good drugs and hopefully we are getting better ones all the time.

Thanks for the reminder,

Denyse

In a message dated 1/18/2008 10:29:48 A.M. Pacific Standard Time, rrfurman@... writes:

Denyse,

It is very much worth remembering that there are many other exciting new agents that are being tested in patients not refractory to fludarabine. It is also important to remember that we fortunately have agents like fludarabine which even though it is chemotherapy, is still remarkably effective and well tolerated. So there are many options and it is always good to have options.

Rick Furman

Re: Re: Steroid Treatment and HuMax

> Hi Ann, > > I too am interested in this and will let the group know if I find > any > information. Maybe I missed the answer to this already but I have > not seen anything > come across if anyone knows. > > I don't want to use FR or FCR until it is my last option and > unfortunately > as Dr. Furman pointed out they don't consider us refractory unless > we have had > this treatment and failed it. I hope we are able to get the HuMax > without > clinical trial very soon. It makes things difficult when you know > what you want > to treat with but they won't let us have it. > > Thanks everyone for any info., > Denyse > > > In a message dated 1/12/2008 6:31:13 P.M. Pacific Standard Time, > Sam87107aol writes: > > > > > > In a message dated 1/11/2008 10:13:37 P.M. Mountain Standard Time, > > pkennedy16aol (DOT) In a messag > > would be happy to get more information for anyone who might be > interested in > what they have to offer. > > > > > Thanks for the offer Pat. I'm interested in treatment > requirements > clarification - i. e. would they accept someone who refuses > Fludarabine, not ready > for Campath, but has used Rituxan. > > Ann > Albuquerque, NM > > > > > ____________________________________ > Start the year off right. _Easy ways to stay in shape_ > (http://body.aol.com/fitness/winter- > exercise?NCID=aolcmp00300000002489) in the new year. > > > > > > > **************Start the year off right. Easy ways to stay in > shape. > http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 > Start the year off right. Easy ways to stay in shape in the new year.

January 18, 2008

Denyse,

It is very much worth remembering that there are many other exciting new agents that are being tested in patients not refractory to fludarabine. It is also important to remember that we fortunately have agents like fludarabine which even though it is chemotherapy, is still remarkably effective and well tolerated. So there are many options and it is always good to have options.

Rick Furman

Re: Re: Steroid Treatment and HuMax

> Hi Ann, > > I too am interested in this and will let the group know if I find > any > information. Maybe I missed the answer to this already but I have > not seen anything > come across if anyone knows. > > I don't want to use FR or FCR until it is my last option and > unfortunately > as Dr. Furman pointed out they don't consider us refractory unless > we have had > this treatment and failed it. I hope we are able to get the HuMax > without > clinical trial very soon. It makes things difficult when you know > what you want > to treat with but they won't let us have it. > > Thanks everyone for any info., > Denyse > > > In a message dated 1/12/2008 6:31:13 P.M. Pacific Standard Time, > Sam87107@... writes: > > > > >

> In a message dated 1/11/2008 10:13:37 P.M. Mountain Standard Time, > > pkennedy16@... a messag > > would be happy to get more information for anyone who might be > interested in > what they have to offer. > > > > > Thanks for the offer Pat. I'm interested in treatment > requirements > clarification - i. e. would they accept someone who refuses > Fludarabine, not ready > for Campath, but has used Rituxan. > > Ann > Albuquerque, NM > > > > > ____________________________________ > Start the year off right. _Easy ways to stay in shape_ > (http://body.aol.com/fitness/winter- > exercise?NCID=aolcmp00300000002489) in the new year. > > > > > >

> **************Start the year off right. Easy ways to stay in > shape. > http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 >

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