On Wednesday, January 14, 2015, Richard H <rbhuffm...@gmail.com> wrote:
> 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 soon >> Best 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 > <javascript:_e(%7B%7D,'cvml','CMLHope@googlegroups.com');> > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > <javascript:_e(%7B%7D,'cvml','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 > <javascript:_e(%7B%7D,'cvml','cmlhope%2bunsubscr...@googlegroups.com');>. > For more options, visit https://groups.google.com/d/optout. > -- -- tcan...@gmail.com -- -- [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.
