Hi Again Dean,

Well I guess I posted too soon.  It appears that your situation is a 
bit complicated but you are going to one of the best centers in the 
world so you can rest assured that you are getting very good care.  

I'm inclined to think that it may be one of your other medications 
causing you these headaches only because they are not the norm for 
Gleevec users.  I realize that you need both treatments so I hope 
they can find something to help you.  How uncomfortable you must be.

Best wishes, and let us know how you are.
Tracey


--- In [email protected], "Dean" <[EMAIL PROTECTED]> wrote:
> 
> Thank you all,
> I am currently being treated at Memorial Sloan Kettering, needless 
to say, I have faith in 
> their knowledge of available treatments.  Currently I guess I am 
just scared, I am also 
> being treated for HIV (19 years)  with protease inhibitors, my 
case has many doctors 
> scratching at their foreheads. So all the 'hiccups' that I am 
having are due to the two 
> diseases and treatments fighting each other,  I have been on 
gleevec for 20 months now 
> and am just now accepting the fact that I may have reached my 
limit of treatment 
> effectiveness.  I am hoping for something that just does not seem 
to be a reality, a new 
> treatment that has FDA approval.  I do not meet the requirements 
to be in any new clinical 
> trials because my case will not end with a positive response and 
we all know that these 
> drug barons won't tackle a losing battle, it won't look good in 
the end report.
> Again thanks to everyone for the concerned e-mails and well 
wishes, you've touched my 
> blackened and blue heart.
> 
>   --- In [email protected], "hey00nanc" <[EMAIL PROTECTED]> wrote:
> > 
> > --- In [email protected], "Dean" <[EMAIL PROTECTED]> wrote:
> > > 
> > > Platelets dropping, HBG too high, RBC too high, unable to use 
the 
> > bathroom for days on 
> > > end. Can't eat, Gleevec shut down my sphincters, cannot 
evacuate 
> > bowels unless all liquid.  
> > > Is there nay other medication for CML?
> > _______________
> > 
> > Hi Dean,
> > I don't know if you have given more history before on the list, 
but 
> > maybe you can (again?). When were you dx and what has your 
treatment 
> > been to date?
> > 
> > What I am really wondering about is the high red cells? I am not 
> > familiar with that being part of CML. CML is a white cell 
disease. 
> > Do you know for sure that you have the correct diagnosis?
> > Were you treated with hydrea initially? and how did you tolerate 
that 
> > medication (in comparison to your present problems). 
> > Can you go back on hydrea until one of the new drugs is 
available?
> > 
> > I do agree with Cheryl-Anne that it might be appropriate for you 
to 
> > have an evaluation with a cml specialist if you have not done 
that and 
> > it is an option for you. 
> > 
> > just FYI....people do survive a long time on hydrea, so maybe 
that is 
> > an option for now. 
> > 
> > Nancy C.





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