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Hi ,

Thanks for the news, even though it isn't good. I highly recommend that you go

to Jerry Mayfield's website www.newcmldrug.com , then find BMS Discussion and

post your message there. There are a lot of people in the BMS posting there and

they have access to the BMS people all the time.

L

[ ] need help with BMS trials

Hi all!

My computor has been down for more than a week. I finally had to break dopwn

and get a new one. I received this letter from Judy Orem, and am passing it on

to you. I hope that you can help.

Yesteray I was up at OHSU with a couple friends who were seeing Dr Druker. He

told both of them that they need to get on the BMS trials NOW. Both are

chronic but having difficulty controlling their counts with 800 Gleevec.

OHSU won't have the phase II trial before July at the earliest due to feet

dragging from the board that oversees new trial requirements at OHSU. Admin

type people and not doctors.

There are five different protocols that are involved with Phase II so that

hope is that Ray and Ginny can get into one. The problem that needs help is

that BMS is considering closeing phase II now and waiting for six months to go

to phase III. Novartis wanted to do a similar thing but the petition convinced

them that the need and interest was there to enlarge the phase II trial. Those

new folks got on the drug but were not officially part of phase II. That meant

that when Gleevec was approved they no longer continued to get their drug like

the real phase II folks are doing. Rather they were a ready market for

purchasing Gleevec and were advocates to their health insurance companies to get

them to add Gleevec to their prescription list.

What I think we need now is another gound swell from the cml community to go

after BMS to get them to expand rather than close the phase II trials. That's

where you come in. We need someone who is part of that community to shake,

rattel and roll the group into doing another petition or some such to get this

done. Can you see if there might be some interest in pushing BMS (CO.) to

increase rather than shut down phase II? Please see if you can get some

interest out there to help the folks that Gleevec isn't enough for and who need

the new BMS drug now.

I talked with , on the LA phase I trial, and she feels great. Since she

was more advanced she is slower to get cytogenetic results but her counts are

under control and PCR shows improvement. The best part is she feels alive

again. She said they are getting really good results at LA and the side effects

are un-noticeable for her or her friends on the drug.

Any help is appreciated.

---------------------------------

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Hi and Judy,

Great idea. I know someone high up in BMS and will write him about this.

I'll think about what else I can do as well. A letter blitz from everyone on

all the CML lists (which are MUCH larger than they were before because we

live so long now, and because we're such a gregarious group of " patients "

;-)), along with their family and friend ought to do it. If we do this, we

should aim to send all the letters in the same week.

Cheers,

R

> Date: Thu, 26 May 2005 12:44:06 -0700 (PDT)

> From: Orenstein <ornurse954@...>

> Subject: need help with BMS trials

>

> Hi all!

>

> My computor has been down for more than a week. I finally had to break dopwn

> and get a new one. I received this letter from Judy Orem, and am passing it

> on to you. I hope that you can help.

>

>

>

>

> Yesteray I was up at OHSU with a couple friends who were seeing Dr Druker. He

> told both of them that they need to get on the BMS trials NOW. Both are

> chronic but having difficulty controlling their counts with 800 Gleevec.

>

> OHSU won't have the phase II trial before July at the earliest due to feet

> dragging from the board that oversees new trial requirements at OHSU. Admin

> type people and not doctors.

>

> There are five different protocols that are involved with Phase II so that

> hope is that Ray and Ginny can get into one. The problem that needs help is

> that BMS is considering closeing phase II now and waiting for six months to go

> to phase III. Novartis wanted to do a similar thing but the petition

> convinced them that the need and interest was there to enlarge the phase II

> trial. Those new folks got on the drug but were not officially part of phase

> II. That meant that when Gleevec was approved they no longer continued to get

> their drug like the real phase II folks are doing. Rather they were a ready

> market for purchasing Gleevec and were advocates to their health insurance

> companies to get them to add Gleevec to their prescription list.

>

> What I think we need now is another gound swell from the cml community to go

> after BMS to get them to expand rather than close the phase II trials. That's

> where you come in. We need someone who is part of that community to shake,

> rattel and roll the group into doing another petition or some such to get this

> done. Can you see if there might be some interest in pushing BMS (CO.) to

> increase rather than shut down phase II? Please see if you can get some

> interest out there to help the folks that Gleevec isn't enough for and who

> need the new BMS drug now.

>

> I talked with , on the LA phase I trial, and she feels great. Since she

> was more advanced she is slower to get cytogenetic results but her counts are

> under control and PCR shows improvement. The best part is she feels alive

> again. She said they are getting really good results at LA and the side

> effects are un-noticeable for her or her friends on the drug.

>

> Any help is appreciated.

>

>

>

>

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