Jeannie, Please let us know how the test results came out. Thinking of you. Beth
-----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Jan 10, 2015 9:45 am Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis? Thanks Joyce Yes I'm going to have another BMT fri. They will find out what's going on. Staying positive and trusting in The Lord. Blessings Jeanie 18's Sent from my iPhone On Jan 10, 2015, at 1:47 AM, Joyce Mesnarich <[email protected]> wrote: 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. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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