Thanks Marty your always such a great help to me and everyone in our group. greenie In a message dated 1/16/2015 10:47:55 P.M. Eastern Standard Time, wa2...@gmail.com writes:
Greenie, I once had a problem with them and was refused some services that I required so I started a dispute and even if it took several months I prevailed. Some of the people working there think they have the only say in it and at times they are wrong. Now you know why I don't want to deal with the VA anymore. If you read what was going on there recently then you will see exactly what I mean. A lot of people were fired for not doing their jobs. These people working there probably never saw any action in any war yet they think that they have the power over you. Please let me know if anything happens after you complain. Good luck! 18's, Marty On Fri, Jan 16, 2015 at 10:06 PM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Marty, I was planning to do just that. Thanks. greenie In a message dated 1/16/2015 7:22:42 P.M. Eastern Standard Time, _wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) writes: Greenie, if I were you I would appeal this decision. You have absolutely nothing to loose. Now you know why I want nothing to do with the VA. 18's, Marty On Fri, Jan 16, 2015 at 7:34 AM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Good morning Marty, The VA, they are on my I don't want to talk about list. I received a letter last week to see if I'm eligibility for choice card benefits. So I call their number and Secretary Bob left me a message thanking me for my years of service. I was in the Navy for 6 years, from 1956 to 1962, 3 years of active duty and 3 years of active reserve. I gave the women my information and she told me that I I'm not eligibility for anything. All I want is to get hearing ads. She told me that I make to much money, What, to much money are you kidding me. She said I make $238.00 a month to much and I don't qualify. When you turn in you income taxes they check you income. I guess I should have gotten married and had kids after getting out of high school or went into college or moved into Canada. But no I went into the Navy then after getting out I went into college. Thank you Secretary Bob. greenie In a message dated 1/16/2015 7:09:14 A.M. Eastern Standard Time, _wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) writes: 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 <_rbhuffman1@gmail.com_ (mailto:rbhuffm...@gmail.com) > 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 <rbhuf...@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_ (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_ (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_ (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_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto: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+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (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_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto: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+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (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_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto: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+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (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_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto: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+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (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_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto: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+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (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+unsubscribe@googlegroups.com_ (mailto: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.