Thanks Marty.. Yes I I am. Quoting the man we celebrate on Monday. "We shall overcome!".
Richard H. On Friday, January 16, 2015 at 6:09:11 AM UTC-6, wa2yyx wrote: > 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] > <javascript:>> 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] >> <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.
