tag:blogger.com,1999:blog-19102494.post113814555382749257..comments2023-10-07T07:52:24.587-07:00Comments on CLL Diary: One aim of treatment is to not treat aimlesslyDavid Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-19102494.post-61183970180164324082008-04-20T12:21:00.000-07:002008-04-20T12:21:00.000-07:00I'm not familiar with the condition the last comme...I'm not familiar with the condition the last commenter describes. One question I would have is whether adding the fludarabine would alleviate the problem for good, or for a long, long time. Or would it be a short fix? You mention "possible demise," so I gather this is a potentially serious matter, not unlike my AIHA. I would seek a second opinion from an expert doctor, one familiar with your condition and its treatments. Perhaps there is a milder approach that will work; if not, I still would not hesitate to get the treatment I needed.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-78718184915132434272008-04-10T13:43:00.000-07:002008-04-10T13:43:00.000-07:00My oncologist has suggested taking both Rituximab ...My oncologist has suggested taking both Rituximab and Fludarabine in order to suppress amyloid production (IGM lambda), which has been seen in my muscles and is causing Inclusion Body Myositis symptoms. It does seem highly likely that this regimen will suppress the amyloid and thus possibly help the muscles, and prevent amyloid accumulation elsewhere (and possible demise!). But is the "cure" possibly worse than the disease? Possible to simply take Rituximab? Or, do nothing at all?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-1162268898852548502006-10-30T21:28:00.000-07:002006-10-30T21:28:00.000-07:00I'm not sure that the last poster understood what ...I'm not sure that the last poster understood what I was saying about the vanity issue. Vanity is not a reason to treat but I am aware of cases in which it has been used as a reason for treatment. The NCI guidelines call for treating when nodes reach 10 cm; in some cases that can be way too big for comfort and it is easier to treat nodes that are smaller than that, especially if one is using Rituxan alone.<BR/><BR/>Readers of this blog know that I have a very conservative approach to treatment but that I also think chemotherapy has its place when used at the proper time. I have also always said that I respect the decision each of us makes when it comes to treatment because I know how hard it is to reach that decision. We must all find the treatment we truly believe in, whatever it may be.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-1150401748922349632006-06-15T13:02:00.000-07:002006-06-15T13:02:00.000-07:00You dismiss those who seek treatment for 'chipmunk...You dismiss those who seek treatment for 'chipmunk cheeks' as being pathetic vanity-philes. <BR/><BR/>You are way to harsh in your criticism, and you betray a lack of understanding some of the subtleties of the disease.<BR/><BR/>Grossly enlarged lymphnodes qualify as 'bulky disease', which is terribly difficult to treat effectively. You should know that.<BR/><BR/>You miss the mark here.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-1138345554553384902006-01-27T00:05:00.000-07:002006-01-27T00:05:00.000-07:00Thanks to all for your comments. Andy, I think you...Thanks to all for your comments. Andy, I think you are exactly right in calling this an issue of common sense. I think we patients (and our doctors) can get so caught up in parsing the trees that we forget to look at the forest.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-1138285116470367122006-01-26T07:18:00.000-07:002006-01-26T07:18:00.000-07:00David: your blog brings home the truth that nothin...David: your blog brings home the truth that nothing can substitute for common sense, specially when one's life hangs in the balance.<BR/><BR/>Science is indispensable to the understanding of the pros and cons but when it comes to making a value judgment, science has nothing to say, - that's something many patients (and many doctors as well) fail to grasp.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-1138258417367913732006-01-25T23:53:00.000-07:002006-01-25T23:53:00.000-07:00once again you have hit the nail the nail on the h...once again you have hit the nail the nail on the head with how I think. Keep up the good work. ElyseAnonymousnoreply@blogger.com