A Newbie with Non Hodgkins Lymphoma in Cancer Forum

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A Newbie with Non Hodgkins Lymphoma

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Bill6815		#81	[url]	[-]
Posts: 34 Oct 7 12 9:44 PM	Insider, Your information is right on target. My oncologist who is very active with clinical trials insists there are some promising non-toxic single agent therapies (like rituxan) being tested that could help increase remission time between treatments. I am hoping a few more decades with non-toxic treatments. Good luck with your future treatments.
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WestPac72	FNHL 100%	#82	[url]	[-]
Posts: 5 Apr 24 13 9:25 PM	[size=120]My ship went to Vietnam in 72. We took part in assaults, amphibious and with helios of South Vietnamese Rangers. So 40 years later I find I have FNHL. I file a claim with the VA in April of 2011. I start rituxan treatments by IV in June 2011. 18 months after I filled my claim, 16 months after I started treatments the VA makes a decision. They denied my claim. Even though NHL is presumptive to service in Vietnam or "the waters offshore of vietnam." I see people still "post" boots on the ground. There is no requirement for "visatation for NHL! So the VBA denied my claim anyway. My VSO filled my appeal (of which I wrote the plea). Then my VSO told me my appeal would take 6 years! Yes, Seattle is backed up 6 years on appeals. My VSO was not going to push it, told me to wait in line. Wait in line, the VA was not handling my claim as agent organge or NHL which are fast tracked! So I balked and wrote my Senator, Patty Murray, the chairman of the Senate Vet committe. One month latter I get a call from her staff in Wash DC in the morning. They ask a couple questions and another call that night, "Mr. Johnson your claim has been approved! My Senator's staffer said,"The VA made a grevious error and we are happy to correct it, and we are sending people from Wash DC to train Seattle in NHL claims! So much for following the rules. The VA makes terrible mistakes on purpose just to deny your claim. The VA hospital in Spokane where I go is wonderful. The regional office in Seattle treats Vietnam vets as if we were the Viet Cong. And my VSO tried to take all the credit for my approval. I cut that short! My rating is 100% as long as I am in treatment. !!! What the heck FNHL is uncureable just like CLL. I have a friend in the Amercian Legion post here who has CLL and he is 100% TP. I am temporary. He is in remisson and has not gone for treatment for 2 years. The VA is crazy, mixed up and plain stupid. I lost 50 pounds, became very weak, and lost my job. After starting treatment I have gained back the weight and some strenght but have a terrible immune system. So after treatment the VA is going to kick me from 100% to 0% and throw me out in the streets. Then I can become a homeless veteran, with NHL. Me[/size]
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Norris		#83	[url]	[-]
Posts: 32 Apr 25 13 6:04 PM	WestPac72 wrote: So after treatment the VA is going to kick me from 100% to 0% and throw me out in the streets. Then I can become a homeless veteran, with NHL. WestPac, not really true. After your Lymphoma is in complete remission (could be two more years), you will be given a final C&P exam and then be rated on residuals. I know because I was diagnosed with Diffuse Large B Cell Lymphoma, December 2009. I continued to draw 100% temporary until last month. My C&P exam was conducted in Feb, and the residuals, which consisted of Perifricial Neuropathy (SP) both legs rated at 20% per leg, (bilateral factor 44%). That brought my total rating up to 70% and I was awarded TDIU permanent and total which means payment at the 100% rate. You may even be rated at 100% and not have to worry about the IU. My treatment consisted of R-CHOP admistered every twenty one days. Total of six treatments.
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Insider		#84	[url]	[-]
Posts: 840 May 6 13 7:14 PM	WestPac72 wrote: I have FNHL. I start rituxan treatments by IV in June 2011. 18 months after I filled my claim, 16 months after I started treatments the VA makes a decision. My rating is 100% as long as I am in treatment. !!! What the heck FNHL is uncureable just like CLL. I have a friend in the Amercian Legion post here who has CLL and he is 100% TP. I am temporary. He is in remisson and has not gone for treatment for 2 years. The VA is crazy, mixed up and plain stupid. So after treatment the VA is going to kick me from 100% to 0% and throw me out in the streets. Then I can become a homeless veteran, with NHL. WestPac72, Glad to hear that the VA corrected it's rather stupid error and service connected your fNHL. Even if someone is a blue water RVN vet, NHL is presumptive although it is currently the only blue water presumptive. According to medical literature there is only one "cure" for fNHL but, such a cure is very qualified. Your cancer must be either stage I or II and it must be successfully treated by radiation therapy at these stages. Most people; however, won't be diagnosed at these stages due to lack of symptoms. Once the fNHL has progressed beyond stage I & II it is not considered curable. Even at stages I & II, I believe that this cancer can be cured, but even then there is no guarantee. Otherwise, fNHL is not considered curable and, chemotherapy, to include Rituxan, is not considered a curative-type therapy. Chemo-therapies only manage symptoms like reducing tumor size. Even if the tumors are reduced to an indiscernible size, the fNHL is there and will return. Your VAMC docs may be your best change to get the VARO to make your fNHL P&T. See if you can get one of them to write a statement that your fHNL is not curable and that all treatment modalities are meant to treat symptoms and are not used to cure this type of cancer. Apart from a VAMC or a private hematologist/oncologist putting this in writing you may continue to have a difficult time with the VARO. Even with an appeal the BVA will need to see that this disability is not curable. As to the mention of CLL is 100%, this is the case because the VA has a FAQ instructing the raters to mak this one cancer P&T (despite this, some raters still forget about the directive just like some raters forgetting to accept NHL as a presumptive for blue water RVN vets). Unfortunately, no other cancers enjoy the same automatic treatment that CLL "enjoys" in terms of P&T status. I disagree with this policy as it relates to fNHL and other indolent NHLs but, it is was it is. Talk with your docs about it and remember, if at an time during this time that you are not 100% you undergo testing and the doc mentions a tumor related to the fNHL, submit this evidence to get your 100% reinstated. Good luck.
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