Re: Ariad Trial/Lottie

[Guest guest]

Lottie, I don't think Dr. Talpaz see my pcr changing as bouncing.  I was told

right out the drug is not working.  Is there a phase one at MDACC?  I have heard

very little about this drug, only that Dr. T wants it at a higher level before

Len and I go on it.  As for the month I said it should take, that was what I

heard from another person, so I really don't know when it will happen.  Ernie,

Len and myself, we're all waiting.

Now, about my former nurse.  She and I do correspond from time to time, but the

email I am referring to is like the one Anita mentioned.  Someone else is saying

someone has referred us, or whatever, it is not  the actual person sending an

email.  It is some kind of scam, or some way to get more addresses, i don't

know. There were two emails, one from a Rosemary and one from a Penny, both sent

to our address.

I would think everyone received one. Confusing???  Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)  

From: Lottie Duthu <lotajam@...>

Subject: [ ] Ariad Trial

" CML " < >

Date: Thursday, January 15, 2009, 4:28 PM

Dear Bobby,

There are quite a few of us waiting to see what the Ariad trial will bring

to the non-responders of everything else. Dr. Kantajarian is looking forward to

the opening of phase 2. Do you really think it will be in a month? Now that

the doctors have more data on these kinase inhibitors, I don't think they get

too excited about bouncing PCR's and the quarterly dips we see in our BMA's.

I've been around too long and seen so many diversifications and modifications,

to the mix, there aren't that many surprises left.

By the way I think the email from your former nurse is very tacky and downright

unethical, unless you had a personal relationship and were in touch. Why would

you even be in her address book after all this time. There must be some

software out there to keep these communications down to a minimum. I had one

some time ago, called a white list, but after my computer crashed, I lost it.

You have to pre-register with the adressee to ask that your email be permitted

to go through to your mail box. Anyone have any suggestions? Call it junk

mail, spam or whatever, it is an annoyance, especially the ones telling you that

you have been selected to receive millions of dollars. Some people actually

fall for it and they are raking in the money or they wouldn't have so many. Why

don't they just get a real job?????

Blessings,

Lottie

[Guest guest]

Wouldn't that be awesome if we all went in the same trial  at the  same time!!

 

Dr. Cortes said that the initial stay is  4-6 weeks. Return trips quite

stringent for a time before being reduced to every 3 months. He is going to let

me know ASAP when it's in the  Phase II. He also said that the dosage is too low

for me right now.  He said that at times  he might have an opening for one

patient but nothing is for sure right now.  So I wait for the  email or phone

call saying " it's time " .  Along with all of  you.

 

God Bless - Prayers are with all of you.

Jackie

From: Lottie Duthu <lotajamcomcast (DOT) net>

Subject: [ ] Ariad Trial

" CML " <groups (DOT) com>

Date: Thursday, January 15, 2009, 4:28 PM

Dear Bobby,

There are quite a few of us waiting to see what the Ariad trial will bring to

the non-responders of everything else. Dr. Kantajarian is looking forward to the

opening of phase 2. Do you really think it will be in a month? Now that the

doctors have more data on these kinase inhibitors, I don't think they get too

excited about bouncing PCR's and the quarterly dips we see in our BMA's. I've

been around too long and seen so many diversifications and modifications, to the

mix, there aren't that many surprises left.

By the way I think the email from your former nurse is very tacky and downright

unethical, unless you had a personal relationship and were in touch. Why would

you even be in her address book after all this time. There must be some software

out there to keep these communications down to a minimum. I had one some time

ago, called a white list, but after my computer crashed, I lost it. You have to

pre-register with the adressee to ask that your email be permitted to go through

to your mail box. Anyone have any suggestions? Call it junk mail, spam or

whatever, it is an annoyance, especially the ones telling you that you have been

selected to receive millions of dollars. Some people actually fall for it and

they are raking in the money or they wouldn't have so many. Why don't they just

get a real job?????

Blessings,

Lottie