Hi Richard, It seems that you are between a rock and a hard place with the VA. That is something that you must deal with but if there is ever a chance to get rid of them for your meds or care then I don't need to go further...
I wish you the best of luck. 18's. Marty On Fri, Jan 16, 2015 at 12:32 AM, Richard H <[email protected]> wrote: > 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]> 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] >>> 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 [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.
