tag:blogger.com,1999:blog-19102494.post860901618208213091..comments2023-10-07T07:52:24.587-07:00Comments on CLL Diary: April nightmare; May resolve David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-19102494.post-39378352198551130242013-07-16T13:00:22.103-07:002013-07-16T13:00:22.103-07:00I am very sorry to learn of the latest development...I am very sorry to learn of the latest development. Your blog has been an inspiration to me since 2005.<br /><br />You are in my prayers and you have the right approach to defeat Richters. Be strong, my friendStunoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-24986611005632329802013-07-16T06:42:56.924-07:002013-07-16T06:42:56.924-07:00I'm sorry to read about this latest developmen...I'm sorry to read about this latest development, and can but hope the treatments you face will prove effective.<br /><br />I've been reading your blog for about a year, after being diagnosed will CLL in Oct. 2011 (though I guess I'd had it for 1-2years before that). As the disease was progressing quickly, I had BR (on the national health in the UK) from April to Sept. 2012, and reacted very well as far as CLL was concerned - though got a squamous carcinoma on my nose which grew so big before they removed it that the nose had to be rebuilt with a bit of forehead. I am probably OK at the moment - for the time being.<br /><br />Good luck, mate - and if you have the energy. let us know how you're getting on.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-40610968598666478352013-06-30T19:58:45.002-07:002013-06-30T19:58:45.002-07:00Hello David. I have been following your blog since...Hello David. I have been following your blog since my wife was diagnosed in April with CLL. First, I want to thank you for your courage to share your story. The ongoing fight against this insidious disease has very much taken over our lives. My wife was being seen by Karmanos cancer center and during the start of the second round of FCR, her Doctor told us she was not responding and suggested she get into a clinical trial at OSU. Right after the Doctor suggested that, my wife had a temp of 103 and was hospitalized for a week until her fever went away (bactrim response we think). We are now awaiting test results to determine if she is a candidate for the ibrunitib study. She has 17p deletion and I am concerned about a RT diagnosis. The Karmanos doctor implied this but never confirmed before we set out to get her tested at OSU but we are hopeful for a negative RT diagnosis. Please let all of us know how you are doing. God bless you and your family. <br />GaryGarynoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-57203989447492934242013-06-29T06:19:12.858-07:002013-06-29T06:19:12.858-07:00Praying for you and hoping that you will beat this...Praying for you and hoping that you will beat this!<br />Mireille - The NetherlandsAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-36827929605961968122013-06-23T15:20:16.267-07:002013-06-23T15:20:16.267-07:00So sorry to hear of this turn of events, Dave, and...So sorry to hear of this turn of events, Dave, and hoping for the best possible outcome for you -- and soon! Hang in.<br />Sherry Gardner<br />Ft. Collins COAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-28497924952684597402013-06-16T04:14:18.666-07:002013-06-16T04:14:18.666-07:00Difficult turn of events, David. Since being diagn...Difficult turn of events, David. Since being diagnosed myself a little over a year ago, I've been reading and worrying about Richter's syndrome. Darn it, I wish this wasn't happening to you. I've only left a couple of comments, but I've read almost your entire blog, so it feels to me like you're a friend who shares this unfortunate cll ondition. All the best!<br />-AMAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-25789166210419330212013-06-11T13:13:00.860-07:002013-06-11T13:13:00.860-07:00I check in on you here once a quarter or so - and ...I check in on you here once a quarter or so - and am always encouraged by your information and gift for excellent journalism. Sending good thoughts to you, and you are in my prayers. HeidiAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-6753051861122959022013-06-05T14:22:21.920-07:002013-06-05T14:22:21.920-07:00Hello David, I was DX with CLL in 2002 at age 40. ...Hello David, I was DX with CLL in 2002 at age 40. I did not have treatment but saw my HGB & platelets slowly dropping and my LDH steadily rising. Found a lump in my breast in August 2009 and breast grew to "Dolly Parton" size in a week or two. I also had Richter's and was treated with R-CHOP which gave me a temporary remission from both CLL & Richter's. The CLL has creeped back. Wishing you the best in your battle and letting you know that although the battle can be difficult, we can beat this son of a gun called Richter's. Sending you hugs and keeping you in my thoughts and prayers. Janet O'Brien in Cornwall, Ontario CanadaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-12509048317199958292013-06-05T12:07:59.837-07:002013-06-05T12:07:59.837-07:00Sorry to hear about your Richter's David, min...Sorry to hear about your Richter's David, mine occured about 8 months ago, amazing how fast CLL goes to the back burner...<br /><br />~chris<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-69596631225563962332013-06-05T07:46:31.034-07:002013-06-05T07:46:31.034-07:00David, I am so sorry to hear about this. I've ...David, I am so sorry to hear about this. I've been following you for about a year and was hoping you'd be able to get into one of the ibrutinib trials. You are very brave and strong and I know you will continue to battle this miserable disease. Thank you for sharing your story with us so that we may cheer you on and learn from your experiences. Hugs from Texas.Skullgalhttps://www.blogger.com/profile/18064803785501318021noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-73500768111931230022013-06-04T21:21:25.458-07:002013-06-04T21:21:25.458-07:00David, So sorry that the battle continues for you...David, So sorry that the battle continues for you but I rest in the knowledge that you are indeed a fighter! Pleased to hear your response to treatment, a great beginning to the battle ahead. You and M will remain in my thoughts. Thank you for being willing to share with all of us your journey. All my support and love, WendyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-46879413518861827172013-06-04T04:22:07.337-07:002013-06-04T04:22:07.337-07:00David I'm so sorry to hear this. I read this u...David I'm so sorry to hear this. I read this update with an impending sense of dread. I've recently joined the CLL Forum and there are a few going through treatment for Richters on there at the moment with good results. Praying for you that the treatment works well enough to get you to transplant quickly. I can't remember - do you have a match out there? How quickly can you get the insurance for it? I'm in Australia and still have trouble getting my head around the fact that you have to pay for these things over there. Sending thoughts and prayers for both you and Marilyn. Deborah in MelbourneAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-24967365682178585302013-06-03T20:16:19.691-07:002013-06-03T20:16:19.691-07:00Sending my hopes and wishes for a fast recovery Da...Sending my hopes and wishes for a fast recovery Dave. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-73275483235543864652013-06-03T18:58:56.960-07:002013-06-03T18:58:56.960-07:00thinking of you
praying for you
appreciating the g...thinking of you<br />praying for you<br />appreciating the gift and wisdom of u<br />Lisa Guestlisa guesthttp://www.lisaguest.comnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-75540166625900998142013-06-03T16:43:04.240-07:002013-06-03T16:43:04.240-07:00So sorry to hear of this downturn. Best of luck.So sorry to hear of this downturn. Best of luck.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-62868539304983866092013-06-03T14:03:28.277-07:002013-06-03T14:03:28.277-07:00David,
I have been following your blog since my hu...David,<br />I have been following your blog since my husband was diagonsed with CLL in October 2011. Unfortunately in February of 2012 he was diagnosed with Richter's. It is very hard to understand why this happens! I hope they figure it out one day. After a long battle and some very encouraging times, my husband passed away in January. I wish you all the best in beating this! Hang in there and never give up. Kate N.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-24117658168961677122013-06-03T06:59:45.395-07:002013-06-03T06:59:45.395-07:00David: This is a nasty turn of events. Your respon...David: This is a nasty turn of events. Your response to treatment is encouraging. I had a Richter's transformation in June 2012 which is documented on Chaya's website.<br />http://updates.clltopics.org/4608-notes-from-a-richter%E2%80%99s-transformation-survivor<br />This is a strenuous and difficult journey which you are handling with grace and grit. I wish you great success.Diane MacKinnonnoreply@blogger.com