Thanks for your service. The only reason I use the VA is to get my medicine. Seeing I am a cancer patient I am forced to see an Oncologist get them to sing the prescription. Without the VA I could not afford the Health Insurance copay until I could get assistance from the Drug company. He was the last one before I took 6 1/2 year vacation. Went I came back he decided he was going to be my primary ONC We had a discussion about who my Primary ONC was too be. At that point he went rogue (like a raging elephant.) I had to take a blood test (CBC+DIF) today so they could check the progress of the CML. That is not going to help at all. My CBC+DIF has not shown any change since the CMLstarted its Upward trend. As of today it was decided that I start 300mg of Gleevec. I contact my preferred ONC as soon I see any weight gain. Fortunately my Primary ONC is also building his own file to assist me clear this hurdle..
I have several friends and family that have to go as they are disabled Vets. Most are being treated for Agent Orange and/or PSD. As Always. 18's and My your tomorrow be all sunshine & roses. Richard H. On Thursday, January 15, 2015 at 4:13:53 AM UTC-6, wa2yyx wrote: > Richard, I am a vet and I would never go to the VA for treatment even for > a hang nail, because I have had previous dealings with them. They were > recently in the news for everything that they were not doing for most of us > vets. > > When someone has CML or any other major disease then most of the doctors > at the VA are not skilled or even trained in this field. I am glad to see > that you also have a true oncologist that is taking care of you. > > And, thank you for serving. > > 18's, > > Marty > > > > On Thu, Jan 15, 2015 at 12:32 AM, Richard H <[email protected] > <javascript:>> 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, [email protected] >>> 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, >>>> [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] >> <javascript:> >> To unsubscribe from this group, send email to >> [email protected] <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 [email protected] <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 [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.
