Dear Lynne,
I wish you nothing but the BEST as you take this new road.
It really sounds like a good plan. It would be wonderful for you to 
get rid of those side effects and be able to really live life to the 
fullest. 
 We are overdue to get
together but please feel free to call or email me anytime.
Much love,
Tina

--- In [email protected], [EMAIL PROTECTED] wrote:
> Well, I am off of Gleevec once again.  I went to Umass to check  
out the 
> lymph nodes, to find the reason that I am suffering so much and 
the  oncologist is 
> taking me off of Gleevec. I am worried that this will affect my  
status on 
> the trial, but I think the doctor is steering me away from Gleevec  
permanently. 
>  I have finally made moves toward Dana Farber, successfully  this 
time, and 
> am hoping to get on the BMS Trial wait list.  The trial is  set for 
April, 
> hopefully, though it is not yet written in Stone.  Speaking  of 
which, I have an 
> appointment with Dr. Stone and I feel very confident that I  am at 
a crossroads 
> here.
>  
> Because of my symptoms, the doctor has ordered a brain scan, MRI, 
and echo  
> for the heart, although he does not think that CHF is present, and 
nor does he  
> feel that the edema that can be so tough on Gleevec  patients is 
causing my  
> problems. But,  from what I am reading on the list, many patients  
report 
> similar problems to what I have, and their doctors say it is  edema-
related.
> I will be having some tests done before I go to Belize but I think 
I will  be 
> having the marrow biopsy and cytogenetics after I come back in 
March.  I  am 
> to stay off of Gleevec for a couple of weeks , and though I look 
forward to  
> the break, I am a little nervous this time.
>  
> I shall endeavor to have a positive attitude throughout all of 
this, but I  
> do worry that as time goes on, Gleevec is going to be phased out of 
my  
> treatment.  It has proven effective thus far, but not effective 
enough  to put me 
> into molecular remission. I have great hope that the BMS drug  will 
be an option 
> for me and for those of us who find Gleevec intolerable  over long 
term. I so 
> wish that I could tolerate the side effects more gracefully  but 
that has not 
> been an option for me lately.  It gave me a great sense of  peace 
over these 
> past four years to know that it was working, and now that is  
coming to an end.
> I will report to the group any information I can glean from Dana 
Farber for  
> those of us living in New England and interested in making  the 
conversion.  
> It would be a welcome change to have a drug that has  less side 
effects and 
> works more efficiently. - Lynne A.





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