Jeanie,
So sorry to hear about your set-back. Glad you are going to Moffitt to try to
sort things out. Remember that we have several other drugs to use.....just
have to get over this rough patch. you are in my prayers and thoughts.
Joyce in IL
Begin forwarded message:
> From: ICANDOALLTTC via CMLHope <[email protected]>
> Date: January 9, 2015 6:53:38 AM CST
> To: [email protected]
> Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
> Reply-To: [email protected]
>
> Hi Richard and thanks for the update. My onc doesn't like for me to be
> informed either; he just ignores what I say and goes on to tell me what he
> thinks.
> My uric acid was high along with my WBC and Platelets. He seemed to be more
> concerned with the high uric acid--even called me on my cell personally
> twice; never had that happen before.
> He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the
> same thing they did 11 years ago when I was first dx.
> He took another blood sample to see if I have a mutation against the Sprycel.
> It seems strange that I had a mutation with Gleevec after 5 years. Is five
> years a cut off point? Has anyone else have this happen? Anyone else been on
> Hydrea after tki?
> Going next week to Moffitt to see if I have the mutation. Will let everyone
> know.
> The leukemia has reared it's ugly head once again!!
> Pray for me and everyone in need.
> Blessings
> Jeanie
> (18)
>
>
> In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time,
> [email protected] writes:
> WOW! Just read todays posts. I am praying for the group. I will add my
> problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water
> weight in 20 days after restarting Gleevec. His nurse called that he was out
> of the country on vacation with his family. She checked with the DR.
> covering for him and he asked me to stop Gleevec as he thought I was gaining
> weight too fast also. My ONC did return to the office on Monday but finally
> had a conference with his Associate and he agreed with that decision. They
> both thought that I should be on a different treatment. My ONC was to draft
> an e-mail to the VA ONC (the one controlling my prescriptions) about my
> reaction to Gleevec and to recommend the treatment he thinks I should be on.
> So I am still in a wait and see stage. My ONC tells me I am too informed
> about my condition and that challenges most blood cancer specialists that
> rarely see CML.
> So let the fun and games continue. I am still feeling great, but the
> "Gleevec Brain" was also starting to show itself, but nine days off has
> cleared it. I'm as sharp as a busted tack, but that is "normal" for me.
>
> As always, "life" and may your tomorrow be beautiful and better than today.
>
> Richard H.
>
>
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