Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Yes CLL and SLL is the same disease, I was lucky the insurers did not know or did not click the first time and approved my 6 rounds in 2006, Sadly in 2007 they had learnt and did not want to pay for it, but I was happy to pay for it rather than do the chemo on its own. They are using rituximab on trials but the National health Service is not doing it outside trials for CLL yet, how long we will have to wait to have it, no one knows. Maybe when the cost comes down they might be less strict. regards Chonette (UK) http://www.cllsupport.org.uk/http://www.justgiving.com/cllsupport Re: NHL] indolent lymphocytic lymphoma SLL grade IV B-cell - Kalina Posted by: " R. Furman" rrfurman@... rrfman Sun Jan 6, 2008 9:29 am (PST) One thing that is important to point out is that CLL and SLL arethe exact same disease. The distinction made for the use ofrituximab sounds entirely arbitrary. Addtionally, there are goodclinical data supporting the use of rituximab in CLL. Whilerituximab is certainly expensive, its risk:benefit ratio is sofavorable, it is hard to justify not using it. Good luck"pushing back".Rick Furman, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 While there is an increase in lymphomas in patients with lupus, CLL is not one of them. When lymphomas and lupus occur together, the thought is that the immune system in lupus patients is not functioning properly and allows, through decreased immune function, the lymphoma to develop. There is a separate area where CLL and lupus might be connected. This is that many believe both are caused by the same cells. Many believe the normal counterpart of the CLL cell is a CD5 positive B cell called a B-1 lymphocyte. These lymphocytes are believed to be the cause of rheumatologic diseases. Rick Furman > > > > > > > > > From: Mission Control <mission-control@ ...> > > > Subject: CLL/SLL > > > groups (DOT) com > > > Date: Sunday, May 3, 2009, 9:56 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, You Guys ~ > > > > > > > > > I'm new to the group. My father was diagnosed in 2003, at the age of 73. He beat CLL through two of rounds chemo - he came out swinging and despite (my) nervousness about his choice of aggressive treatment, he gave it hell. Just as he was starting to feel better, he was diagnosed with Burkitt's Lymphoma. True to his warrior nature, he's defied what his doctors have predicted, and generally, the man is kicking butt. He just celebrated his 80th birthday. > > > > > > > > > I began researching CLL because - as we all do when something bad happens to us or someone we love - I wanted to know why my father got ill. I suspected it was linked to his long career in aerospace. He was a Senior Propulsion Test Inspector on the Saturn V and Apollo programs, at a little known-about nuclear and rocket engine testing facility called Santa a Field Laboratory (SSFL), near Los Angeles. In 1959, a partial meltdown at SSFL gave the facility the distinction of being home to the worst nuclear incident on U.S. soil, releasing over 240 times the radiation as Three Mile Island. Since the reactor was experimental, it was not in a containment structure; therefore over a period of two weeks while they attempted to trouble shoot this experimental reactor and get it back online, radioactive gas was dispersed into the environment. There were other incidents over the decades, and waste disposal practices were unorthodox, resulting in the > exposure > > > of many employees and contamination of the facility that is still being discovered and slated to be cleaned up by 2017, after a new state law (SB990) was passed in 2007. After spending several years working at SSFL, my Dad went on to work on the Titan missiles at Vandenberg, and retired from Lockheed . > > > > > > > > > I searched and searched for information. I live near Los Angeles, and SSFL is fascinating to me, so research came easily. Some CLL-related information was difficult to find, scattered in many different places. I ended up making an acquaintance that is one of the leading epidemiologists in the world in the field of CLL research, and he helped me compile a lot of data. Throughout this endeavor, I reflected that there are likely people out there feeling pretty tired, lacking endurance, help or even computer knowledge that can help them search for this stuff. So one goal of mine was to put the info in two big compilations, and make them available to anyone who is looking. > > > > > > > > > I found out the disease has been reclassified to be analogous to Small Lymphocytic Lymphoma (SLL) and now the name of the disease is considered to be, " CLL/SLL " . They're considered to be the same illness. > > > > > > > > > The Energy Employee Occupational Illness Compensation Program Act of 2000 (EEOICPA) was enacted by Congress to compensate our nation's energy workers who were exposed to radiation or chemicals during the Cold War and the Race to Space. But even though SLL is on the list of cancers they consider linked to radiation exposure, CLL is not on the list ... because old research on Japanese Atomic Bomb Survivors wasn't entirely accurate with respect to instances of CLL. Rather than acknowledge new science (along with The World Health Organization, the Veterans' Administration, the Revised European-American Lymphoma Classification Scheme, and every medical professional in the world who now recognizes that CLL/SLL are virtually the same disease), in a problem of logic, EEOICPA denies Cold War workers who have been diagnosed with CLL (while compensating for a diagnosis of SLL). My father is among those who have been denied benefits on the basis of his diagnosis > > > with CLL. > > > > > > > > > Recognizing that CLL deserves a place on the list beside its cohort, SLL, is a national outcry. EEOICPA continues to stall on recognizing current science. > > > > > > > > > If you happen to be interested in more info on CLL's link to radiation and chemicals used in the atomic and aerospace industries, I encourage you to visit http://www.TheAeroS pace.org and download two compilations in the library. They're free. Since I presented them to EEOICPA on behalf of my Dad and SSFL workers, there are a few facility documents mixed in that detail unprecedented waste disposal of specific materials linked to CLL/SLL... and these may be helpful to those of you looking for a link between chemical exposures and CLL. I hope it helps someone out there. Again... this info is free. > > > > > > > > > TheAeroSpace. org's mission is to provide awareness about SSFL, CLL/SLL's need for reclassification by EEOICPA in concert with current science, and to provide as much info on CLL/SLL - as it is related to aerospace and atomic industries - in one place as possible. You might not equate aerospace and/or atomic research with your situation but much of this research is surprising. Due to the experimentation during this era, so many different things were used - and chemicals can be found in all kinds of different substances. The long latency of CLL makes it possible that exposures occurred upwards of twenty years prior to the disease's onset. So... investigate! !! Knowledge is power, and it is my sincere hope that these compilations help someone, in some fashion. > > > > > > > > > I wish you all the very best of health and happiness. > > > Thank you for forming this group. > > > > > > > > > Best Wishes, > > > D'Lanie Blaze > > > TheAeroSpace. org > > > http://www.TheAeroS pace.org > > > > > > > > > > > > > > > > > > > > > D'Lanie Blaze > > > TheAeroSpace. org > > > IGNITE YOUR INTELLECT : CONNECT! > > > > > > > > > http://www.TheAeroS pace.org > > > blog: http://www.myspace. com/TheAeroSpace > > > > > > > > > > > > > > > Links of Interest : SSFL > > > > > > > > > http://www.ACMELA. org > > > http://www.Rocketdy neArchives. com > > > http://www.CleanUpR ocketdyne. org > > > > > > Quote Link to comment Share on other sites More sharing options...
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