jeanie, Who is your doctor at Moffitt Date: Wed, 14 Jan 2015 21:32:26 -0800 From: rbhuffm...@gmail.com To: cmlhope@googlegroups.com CC: icandoall...@aol.com Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
I am my own advocate, I do have two ONCs. One is at a new regional cancer center and i am completing 12 years of treatment with. The other is with the VA. They are assigning me underqualified Drs. that should not be trying to treat me, but only approving the medication prescribed by the specialist. The VA Doctor has no actual experience in Blood Cancers. I will start the procedures tomorrow to resolve this. Richard H. On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote:Hi Richard and Jeanie I would think that they would want you to be informed. I hope your issues resolve soonBest wishes Shannon On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote: 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, rbhuf...@gmail.com 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 cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com 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 cmlhope+u...@googlegroups.com. 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
