RE: For Tammy... trials/injections

[Guest guest]

Wow, I hope I can do that. I wasn't sure whether it would be injection or a

port thing.

Hmmm... so many questions.

Tammy

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From: [mailto: ] On Behalf Of

livka234

Sent: Monday, October 13, 2008 10:36 PM

Subject: [ ] For Tammy... trials/injections

Yes Tammy... no worries... I self inject myself every day! Two

injections a day... You can get used to it... I hope you get into the

trial. I will try to post to the group all my results and experience

with my trial... Livia

From: Tammy Ferns <tammy@fernsconsulti <mailto:tammy%40fernsconsulting.com>

ng.com>

Subject: RE: [ ] Re: Trials

groups (DOT) <mailto:%40> com

Date: Monday, October 13, 2008, 10:18 PM

Tracey,

I just called today about the possiblity of getting into a trial. I

fit the

criteria. I called my doc, but she isn't in until tomorrow. I am

thinking

the same thing, to be drug free! I am nervous about it, and have a

list of

questions started. Ann Arbor isn't that far, and they said that we

can learn

to self-infuse possibly.

I'll let you all know what happens with it.

Tammy

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From: groups (DOT) com [mailto:groups (DOT) com] On Behalf

Of Tracey

Sent: Monday, October 13, 2008 10:12 PM

groups (DOT) com

Subject: [ ] Re: Trials

Hi ,

I think that's SOOOOO exciting! I know that Giora's experiment

didn't work but I've heard of others that have.

There's that famous study that was done in France where 8 people who

had been PCRU for some time stopped taking their Gleevec and 4 were

able to remain PCRU. The other 4 relapsed but what was interesting

to note was that the 4 who remained PCRU had all taken INF prior to

Gleevec.

If there was a chance I could be drug free, I think I might be

persuaded to try it, as long as I was monitored VERY closely.

I can't wait to hear about your experience if you choose to do it so

please keep us informed!

Tracey

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> Tracey,

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> I think that you had sent the site about all of the trials for

CML. I did write to one in Michigan for the Interferon and Gleevec

one. (Dr. Talpaz is running it.) Well, I'm not eligible for that

one as I have all ready been on INF, but they are interested in

putting me on one to stop my treatment all together! It has not been

approved yet, but should be in a few months. Dr. Talpaz feels that

they do not know of the long term effects of Gleevec, and if you are

PCR negative for a long period of time, maybe you can stop. I know

the Giora tried this at one point and failed, but it is worth

considering as I was on INF for a total of about 3 1/2 years. I

would love to hear what others think of this.

>

>

> DX. 8/1999

> Hydrea until January 2000

> INF, Ara-C until June 2001

> Gleevec 400mg 6,2001

> Gleevec 600mgOct 2001 with INF , neupogen for 1 1/2 years

> Gleevec 600 mg from 1/2003 until present

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