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About capted

  • Rank
    E-3 Seaman
  • Birthday 12/21/1937

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  • Service Connected Disability
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  1. The VA approved Provenge for me but not Zytiga at less than half price. I found out that with the Provenge I would have to have a port installed for 6 weeks because my veins were too small. They won't approve Zytiga because my cancer has not metastasized. I chickened out on the Provenge for right now because of the port infection danger and no showering or swimming for 6 weeks. I really wanted to wait until after the 19th of July because I will have been on Salvestrol Platinum 2000 for a month and am anxious to see if it affects my cancer. Gerry Potter invented Zytiga. He says Salvestrol is better. If you are interested google Gerry Potter, Dan Burke and Salvestrol.
  2. My PCP is a female. My VA Urologist is male and supportive. My civilian Oncologist is male and very supportive. The Oncologist at the Orlando VA is old school and does not want to rock the boat or go to bat for me. I am about ready to go through my US Rep. She is female but when it comes to politics she has balls.
  3. I am really having an uphill battle. I called MD Anderson in Orlando and Houston and got some minimum wage folks. They were very nice but not informed. Will try some different numbers tomorrow. I have established that the VA will furnish Zytiga if you have failed chemo. I have established that MD Anderson will prescribe Zytiga through special permission from FDA to patients who have not had chemo. The question now is if MD Anderson says I need Zytiga NOW, will the VA pharmacy furnish it at no cost? (Show me the money) Since my VA oncologist doesn't want to make waves, I am going to go to MD Anderson in Orlando at my expense and get a script for Zytiga. Is this the way to go???? It seems ridiculous to start ketoconazole because the FDA has not given the blessing to the VA but has to MD Anderson. BTW the PSA has gone from 36 Feb 23 to 96 May 4. So far I don't have any pain or metastasis. I do not want to go the chemo route!!!!!!
  4. Went to Orlando VA on 4 May. Doctor wants me to have another CT Scan and Bone Scan even though the ones 4 months ago show no metastasis. He agrees that I am probably a good candidate for Zytiga but since I have not had chemo, he says he can't prescribe it. He says when the FDA approves it for those who have not had chemo, he will prescribe it. He wants to put me on Ketoconazole in the interim. I would like to know if anyone is receiving it without prior chemo. SP4RVN1971 is getting it but I do not know if he had chemo first. Does anyone know of anyone receiving Zytiga that has not had prior chemo? Thanks, capted
  5. I have an appointment with the VA Orlando office on May 4. I presume they will tell me whether or not they will get me Zytiga off formulary. In March SP4RVN1971 posted he was getting it through the VA. I would like to confirm that he or anyone is getting it without having gone through chemo first. I want to show the precedence has been set to supply it off formulary. Please reply with the VA center you are getting it from. I'm assuming SP4RVN1971 is getting it through Dallas. Thanks, capted
  6. Thanks for the fast reply. You made my day. If you don't mind, what VA facility is the pharmacy in?
  7. Here is a link to an interesting article about new prostate cancer drugs. The author is Gerry Potter, the inventor of Zytiga. He references what may be a better and safer alternative to meds. http://goarticles.com/article/Salvestrol-Q40-Targets-Prostate-Cancer/6239361/ capted
  8. SP4RVN, Thanks for the answer. I'm going to have my civilian Dr. write a prescription for Zytiga. capted
  9. I'm sure all of the Agent Orange Pca guys are wishing you well. My civilian oncologist wants to get me on Provenge but from what I have read, Zytiga is a newer and better solution. Is the VA furnishing the Zytiga? Anyone else having the VA pay for Zytiga? They VA was giving me Zoladex that worked for almost a year and just last week put me on Eligard. It's not working but they figure I would be worse off without it. I have a Medicare Advantage insurance but had rather the VA "thank me for my service" by providing me the med rather than paying a large co-pay to my Medicare Advantage coverage. Please keep us posted. I know Zytiga is not a cancer cure but if it can keep me alive long enough to die of something else; it's worth it. capted
  10. Has anyone been successful in getting the VA to pay for Provenge or Zytiga? The Zytiga website says they will pay all but $20.00 of your copay for Zytiga but not if you are on Medicare, Tri-care or any other government prescription plan. My Medicare advantage program will pay all but $7,000 for Provenge. Since I finally received 100% disability for Agent Orange exposure, I want to know if the VA will pay the cost. From what I read, Zytiga seems to be the best and also the least expensive of the new PC meds. TIA, capted
  11. I'm sorry to be so late updating my situation. I kept searching for squadron members and thank God, I found one who was a pack rat. He had a copy of orders to Saigon with my name on it. The VA reversed its decision and even gave me the disability on Tinnitus which I did not even ask for in my yet unfiled appeal. I did not appeal but had threatened to with the exposure of the DRO as incompetent and ignorant of the law. In the decision to reverse their decision they even referenced the buddy letters which were not even listed as evidence in the first decision. The consensus was they would lose on appeal so they wanted to cover their donkey. Also they did not want to expose that they were not following the law as to the value of buddy letters and the evidence that I was in the same area (Iwakuni) same time, same suadron and the squadron having detachments to Vietnam. If it had not been for the copy of orders, I would probably still be appealing the decision but no doubt would have been succesful without the orders. A retro check of almost $70,000.00 was sweet. DON'T ACCEPT A DRO DECISION THAT YOU KNOW IS WRONG. DON'T GIVE UP WHEN YOU ARE RIGHT!!!!! BTW I have not been able to find a way to update my icon. I was not a seaman but a Naval Aviator with the rank of LT. I give my permission to update it.
  12. OK, we'll try this again. In the pdf file you will see the DRO did not mention my buddy letters but only a set of orders without my name. I also uploaded one of my buddy letters so you can see the quality. I went to the State VA rep today and he said she really made big errors in applying the law. capted Reasons Bases2.pdf
  13. My DRO hearing claim was denied for presumptive illness of PC due to no records that I was in Vietnam. Five notarized buddy letters from fellow aviators attesting that I was in Vietnam were listed as evidence in the SOC. My VA advocate and I discussed these letters in the presence of the DRO for 13 pages of the transcript of the hearing. In the SOC REASONS AND BASES: The DRO purposely ignored by buddy letters in the REASONS AND BASES section. I had hard evidence that my squadron (VP-42) was deployed to Iwaukuni, Japan and sent detachments to Vietnam. I had hard proof that I was a Naval Aviator member of VP-42 at the time VP-42 was sending detachments to Vietnam. Combined with the credible lay evidence of 5 Naval Officers the decision should have been in my favor. The DRO stated "There is no basis in the available evidence of record to establish service connection for prostate cancer". The buddy letters were listed as evidence and discussed. She did not refute the letters (available evidence) in the REASONS AND BASES, she purposely ignored them. Is this a mistake in clear and unmistakeable evidence or fraud? Should I sue? Why should I have to wait two years or more for a VBA?
  14. Thanks for the reference. Could you please send me an un-truncated URL for the .pdf document. I am unable to log onto the Army site without an AKO???? capted
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