Congratulations on 15 years. I was one that put on 25-30 pounds of water retention in 5 1/2 years. After I stopped Gleevec I lost the 25-30 pounds in less than 90 days. When I went back on Gleevec in December I gained 9.5 pounds in 20 days. Let's not talk about the age thing. I am only 74 1/2 years old and just getting started on my 2nd childhood. I do think my caretaker has the impossible task to complete. ( "HA HA HA" Woody Woodpecker)
Richard H. On Friday, January 9, 2015 at 7:11:08 AM UTC-6, greenie wrote: > Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. > Starting to retain fluid around my ankles a little but that could be and > age thing. 75 years old. > > greenie > > In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, > cml...@googlegroups.com <javascript:> writes: > > 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 <javascript:> 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 <javascript:> > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com <javascript:> > 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 <javascript:>. > 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 cml...@googlegroups.com <javascript:> > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com <javascript:> > 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 <javascript:>. > 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.
