Mutations

[Guest guest]

Dear Bobby,

Isn't V299L the same mutation Len has or had? Do you have the T315i, or did

they test you for it? Jackie took the HHT for her T315i and it's gone. She's

still waiting to get into another trial now. Does anyone know if you can reach

CCR as Bobby did and have a mutation at the same time and later relapse? I

would have thought they would have done the mutations test a long time ago after

none of the trials worked for you. Do they have to have a special reason for

testing. I asked for one early on, but I don't think it means you can't develop

one down the line. I think some people developed a mutation while on Gleevec.

Wishing you all the best, Bobby, it's your turn to return to CCR. Will

Zavie issue you a new number? LOL I suppose in his book of records, you are

still listed with your original number. I want a nice even number.

xoxoxoxox

Lottie

[Guest guest]

ROBERTA DOYLE <rcd1929@...> wrote: Date: Sat, 10 May 2008 07:32:43

-0700 (PDT)

From: ROBERTA DOYLE <rcd1929@...>

Subject: mutations

Tracey <traceyincanada@...>

Tracey, for some reason, I cannot send this to , it won't send, please

post it for me? Thanks, Bobby

Hi, don't recall who asked, or if it was anyone from this site, must be

getting old, but I never had mutation testing done before this. This time Dr.

Talpaz said I have the same one Len has, and now I can't remember, tee hee, and

351 mutation. They caused Sprycel to stop working. I do not have T3151, but he

did tell me this week that XL228 that I am on was designed for the T3151. My

pcr is now 6.2%, from 5.5%

I do not like this drug. It takes at least 48 hours for the tongue to start

to " un-numb " so I can taste some food. And last night the " Big D " paid me a

visit, you know the kind, gee, am I going to have to " lean over the jon or sit

on the jon, or both " and make up my mind REAL QUICK and just in case, where

the hell is a bucket? I did have a salad from Pizza Hut, that could have done

it, not necessarily the new drug. Normally I never eat salad from fast food

places, and that's why.

OK, the other mutation is V299L, I had to look it up in my diary. Anyway, he

said not to worry about them, so I don't, that's how come I forgot already!!

Have a great Mother's Day everyone, it is gorgeous here in Brecksville, Ohio,

cool, and sunny, but the rains are coming. Love, 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

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