Re: For Neal, and Lottie....and Dorrie

[Guest guest]

and if you're near Michigan, Dr. Moshe Talpaz will be starting phase 2 of the

Ariad trial also, in Oct. I believe.  Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: hey00nanc <ncogan@...>

Subject: [ ] For Neal, and Lottie....and Dorrie

Date: Friday, September 3, 2010, 1:54 AM

 

>

> Tomorrow I'm going to Cedar Sinai to talk to the CML/BMT specialist. They

> are thinking that I may be a candidate for a BMT. Does anyone here have any

> advice for me? Is it as bad as it sounds?

>

> Also, does anyone have any experience dealing with SSI? We blew through our

> savings when I was on State Disability Insurance last year, and I don't

> think we can make it through another 6 months out of work without a little

> help from the Feds.

>

> -Neal

_________________________________

Hi Neal ( also),

I just had an appointment with Dr. Druker today....I know you are relatively new

to CML but I suppose you recognize that name? the developed of Gleevec and this

whole new era of treating CML with molecularly targeted drugs VS BMTs.

He has an Ariad trial going right now (that is closed....but a Phase 2 will open

soon).......he said that NO MUTATIONS are escaping this drug!!! it is working

for every mutation.

It is not an available drug yet.....you would have to enter a trial but if you

live in Calif?.....the phase 2 trials will probably be with Dr. Shah in San

Francisco.....Dr. Druker in Portland, Oregon.

If you could not wait until that opens (depending on your disease status), you

might get it under compassionate use.

Just because you have a mutation, that does NOT mean you need a BMT. When you

consult with a transplant specialist, you need the facts: what % of patients die

from the procedure (never leave the hospital), or in the first 100 days or the

first year (this is the mortality rate).

What % get chronic graft vs host disease....more likely if you do not have a

related donor for your transplant. If you have cGVHD you could be on medications

for the rest of your life...this is serious stuff.

This is why people will tell you, that a transplant is a last resort treatment

for CML now that we have these drugs. I can't believe that either of you young

gugs (Neal or ) are a candidate for a BMT.

Get the facts.

_______________________

Lottie, Dr. Druker told me today that the trial you are looking at, the trial

drug that starts with D......it has a totally different binding site, so escapes

all mutations and seems to be working well.

Dorrie.....Bosutinib is still just in trials that are closed. Jerry Mayfield

said that it could be a long time before this one is approved (he was on it in

trial). The Ariad trial will be available before anything with Bosutinib.

C.

[Guest guest]

,

That is what the Chef recruiter at University of Michigan told me. As he was

speaking rather quickly, he said it is a dual Src/Bcr/AbL inhibitor, and that

this drug Bosutinib had low incident of hematologic toxicity. However, there

are folks who did have gastrointestinal problems and rash most frequently

with adverse report. It does not inhibit KIT or PDGFR, there is no association

with pleural effusion and or severe myelosuppressions?

I am a vegeterian since being on Gleevec. The carnivoire situation seemed

better

without the dairy nor meat. I don't have ANY mutations, I just hate the way

I feel on Gleevec. I am always cold, I can't manage humidity, and in the summer

in the Midwest I live indoors. Only when the weather is around 85 degrees and

no humidity can I come out and go for lenghty walks with kids and dog.

It is strange to hybernate in the summer seasons while everyone is out doors and

I have to stay indoors!

Thanks, for your advice !Dory Doggie

________________________________

From: hey00nanc <ncogan@...>

Sent: Fri, September 3, 2010 12:54:59 AM

Subject: [ ] For Neal, and Lottie....and Dorrie

>

> Tomorrow I'm going to Cedar Sinai to talk to the CML/BMT specialist. They

> are thinking that I may be a candidate for a BMT. Does anyone here have any

> advice for me? Is it as bad as it sounds?

>

> Also, does anyone have any experience dealing with SSI? We blew through our

> savings when I was on State Disability Insurance last year, and I don't

> think we can make it through another 6 months out of work without a little

> help from the Feds.

>

> -Neal

_________________________________

Hi Neal ( also),

I just had an appointment with Dr. Druker today....I know you are relatively new

to CML but I suppose you recognize that name? the developed of Gleevec and this

whole new era of treating CML with molecularly targeted drugs VS BMTs.

He has an Ariad trial going right now (that is closed....but a Phase 2 will open

soon).......he said that NO MUTATIONS are escaping this drug!!! it is working

for every mutation.

It is not an available drug yet.....you would have to enter a trial but if you

live in Calif?.....the phase 2 trials will probably be with Dr. Shah in San

Francisco.....Dr. Druker in Portland, Oregon.

If you could not wait until that opens (depending on your disease status), you

might get it under compassionate use.

Just because you have a mutation, that does NOT mean you need a BMT. When you

consult with a transplant specialist, you need the facts: what % of patients die

from the procedure (never leave the hospital), or in the first 100 days or the

first year (this is the mortality rate).

What % get chronic graft vs host disease....more likely if you do not have a

related donor for your transplant. If you have cGVHD you could be on medications

for the rest of your life...this is serious stuff.

This is why people will tell you, that a transplant is a last resort treatment

for CML now that we have these drugs. I can't believe that either of you young

gugs (Neal or ) are a candidate for a BMT.

Get the facts.

_______________________

Lottie, Dr. Druker told me today that the trial you are looking at, the trial

drug that starts with D......it has a totally different binding site, so escapes

all mutations and seems to be working well.

Dorrie.....Bosutinib is still just in trials that are closed. Jerry Mayfield

said that it could be a long time before this one is approved (he was on it in

trial). The Ariad trial will be available before anything with Bosutinib.

C.