tag:blogger.com,1999:blog-19584475.post114534740864604638..comments2023-08-27T09:42:54.706-05:00Comments on John's Chronic Lymphocytic Leukemia (CLL) Journey: Confused AgainJohn Wagnerhttp://www.blogger.com/profile/17473272053117617993noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-19584475.post-1153677842793101612006-07-23T13:04:00.000-05:002006-07-23T13:04:00.000-05:00This comment has been removed by a blog administrator.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19584475.post-1153517247514642122006-07-21T16:27:00.000-05:002006-07-21T16:27:00.000-05:00This comment has been removed by a blog administrator.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19584475.post-1145762548659557032006-04-22T22:22:00.000-05:002006-04-22T22:22:00.000-05:00John: We don't have any wonderful insights or cli...John: We don't have any wonderful insights or clinical information, but we do care, and we will be praying that you will have the clear signs that you need, as you make decisions. MD Anderson sounds like a good resource as you try to make up your mind what to do. Hang in there. We love you and Cheryl.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19584475.post-1145577281138353002006-04-20T18:54:00.000-05:002006-04-20T18:54:00.000-05:00Hi John,Melissa O'Mara here. I understand your fr...Hi John,<BR/><BR/>Melissa O'Mara here. I understand your frustration. We were in a similar predicament when Dan was halfway through RFC (on the MDA protocol under care of Dr. Weirda, for whom we have incredible respect). They were going to take him off the clinical trial b/c they felt he was not having an acceptable response. We pushed to keep going as well, partially b/c we could not deal with much else mentally, I was 9 months pregnant at the time. And we were in denial, we did not want to lose the hope of RFC doing the trick. Unfortunately for us, Dan did not achieve remission. In fact, overall, his nodes increased during RFC (although the visible neck nodes came down, each month, but came back up a bit before then next round). His marrow had a minimal response, maybe from 93% to 89%. He took 3 months off, while we started the donor search, and started hyper cvad in the fall. <BR/><BR/>I don't say this to discourage you. I know you know Dan's story well - and his has not been "typical". Mostly I wanted you to know that we understand the frustration of being told that you might not be getting the response you want, and also to let you know about Dan's disappearing and reappearing neck nodes. I guess that should have been a clue! I don't recall his platelet counts, and if they recovered in between. <BR/><BR/>Dr. Weirda is generally very responsive to important e-mail, and it might be worth running by him via e-mail... just a thought...<BR/><BR/>On a different note, thanks so much for your support of Dan and our family on Dan's caringbridge site. He is sitting next to me on his hospital bed - doing MUCH better, and hoping to go home soon!<BR/><BR/>Take care, and we'll be following you, and sending positive energy your way.<BR/><BR/>MelissaAnonymoushttps://www.blogger.com/profile/09271077170851986558noreply@blogger.comtag:blogger.com,1999:blog-19584475.post-1145523299987119882006-04-20T03:54:00.000-05:002006-04-20T03:54:00.000-05:00JohnIt looks as though you have a good partial rem...John<BR/><BR/>It looks as though you have a good partial remission. You need to think about what are the aims of treatment.Terry Hamblinhttps://www.blogger.com/profile/06346629921055055879noreply@blogger.comtag:blogger.com,1999:blog-19584475.post-1145453255414359602006-04-19T08:27:00.000-05:002006-04-19T08:27:00.000-05:00John,We're with you...I like th eMD Anderson path ...John,<BR/>We're with you...I like th eMD Anderson path myself? <BR/><BR/>You mentioned Grumpy, Sleepy and Doc; what about the other four dwarves?<BR/><BR/>;-)Anonymoushttps://www.blogger.com/profile/07180804168996416471noreply@blogger.comtag:blogger.com,1999:blog-19584475.post-1145371098077356172006-04-18T09:38:00.000-05:002006-04-18T09:38:00.000-05:00Way to stick to your guns! On my blog, I once ment...Way to stick to your guns! On my blog, I once mentioned a friend who has had two heart transplants. He told me that when it comes to doctors, to always remember "you are the boss of what happens to you!" I've never forgotten that. If I had gone along with what one of my doctors wanted last winter, I'd be having a bone-marrow transplant right now! After getting other opinions and doing lots of research, it turned out I needed NO treatment for now. (Needless to say, I have never gone back to that doctor!)<BR/><BR/>And good plan getting the sedated BMB! That's the only way to go, espcially if they give you cookies afterward. :)Karenhttps://www.blogger.com/profile/01731696289669656004noreply@blogger.com