tag:blogger.com,1999:blog-19102494.post2591210504736652463..comments2023-10-07T07:52:24.587-07:00Comments on CLL Diary: Hurry up and waitDavid Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-19102494.post-10854390728517307672012-06-22T08:26:45.072-07:002012-06-22T08:26:45.072-07:00HEY DAVID!!!!!! Glad to hear that you are too bus...HEY DAVID!!!!!! Glad to hear that you are too busy to post much! That's always a good thing in the World of CLL.<br /><br />I'm sure you know that Tom has been on Ibrutinib now for a year and a half......it is one amazing pill a day! Some side effects that are not published anywhere yet the research team on Ibrutinib will tell you that they have seen it in other trial rats. HMMMMMMMM..and why do they keep saying they are not seeing these? Tom's problem is purpura and itchy rash outbreaks monthly on his arms and face. Platelets at 115 but we have been told that all of them are not working properly. They show up on the blood test but it is like halloween. I may dress as a cop, but I don't know what to do as a cop in real life. (that kind of thing)---<br />Also, trending, falling RBC's. Perhaps there is an end point of Ibrutinib, but it has done the job this long for Tom. I love this treatment. Hope you get on it.<br />Next up for Tom----Well, the ROR1 CAR trial at MD Anderson. Possibly starting early winter or late fall. We will see. <br />Tell Marilyn HI and keep hanging tough, my friend.<br /><br />Jenny LOUAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-25126280849024757752012-06-12T15:16:14.485-07:002012-06-12T15:16:14.485-07:00A couple of thoughts on some questions that have b...A couple of thoughts on some questions that have been raised:<br /><br />Stew, from everything I can gather, it is indeed fair to say that FCR is the gold standard of treatment at the moment. And it does come with risks, as you point out. Nonetheless, it remains an option worth considering depending on the severity of clinical symptoms and results of tests such as FISH. I haven't had it but I would not rule out doing it if push comes to shove. <br /><br />Dave, nice to hear from you. The study drug with the lysis problem was ABT-199. Apparently at one trial center, someone was give the drug without prophylactic allopurinol to protect the kidneys from tumor lysis, which is a kindergarten-level oncology mistake. The cell-kill was so rapid that the person had a real problem on their hands but survived. My understanding is that the first dose of ABT is now given in the hospital so TLS can be monitored. Apparently the stuff is so powerful it can work wonders overnight. I think there is good potential in the drug, although owing to circumstances I doubt I'll be trying it myself anytime soon. <br /><br />I am waiting on another inhibitor with a better safety profile, although perhaps less dramatic results. I am told again, any day now.<br /><br />These are all trials, of course, and things can and do go wrong as well as right.<br /><br />MD Anderson has teamed up with Banner Health in the Phoenix area. They have a new, underutilized facility with its own small staff and no access to the trials going on in Houston, so there's not a lot of value in it for me. And guess whose insurance won't cover it anyway . . . For people in Arizona, I would suggest the Mayo Clinic in Scottsdale or the UA Cancer Center in Tucson as being the two best centers for care (and if you have to pay out of pocket, better to spend your money at one of those.)<br /><br />Good luck to all. A luta continua, as they used to say in Mozambique.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-14783572105313607662012-05-29T21:22:52.036-07:002012-05-29T21:22:52.036-07:00Hello again David
I don't know why but you...Hello again David<br /><br />I don't know why but you've popped into my mind several times lately. It does sound like you've hit a rough patch...but I know you'll see it through. You seem to be good at that.<br /><br />Anyway, I'll keep a good thought for you,hoping it works out with Trial two.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-25796481634407198982012-05-27T21:04:28.314-07:002012-05-27T21:04:28.314-07:00Oh, yeah, if you care to get in touch via e-mail, ...Oh, yeah, if you care to get in touch via e-mail, my address is dreck@prodigy.net<br />Thanks,<br />Dave EckbergDave Eckberghttps://www.blogger.com/profile/08992997044938074424noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-52102983093534301512012-05-27T20:07:04.685-07:002012-05-27T20:07:04.685-07:00Hi Dave,
I've been checking in on your blog f...Hi Dave,<br /><br />I've been checking in on your blog from time to time to see how you're doing. You and I are running rather parallel lives as I, too, have CLL and I, too, have a little blogspot.com blog I use to keep up with family and friends called my Adventures With Leukemia, though I readily admit that yours is better written and organized than mine.<br /><br />I have had CLL for over ten years now, a landmark I never expected to see. My dad had the same disease and was dead within five years. I have had mostly good markers for most of my CLL ride; IgVh mutated, ZAP 70 negative, low CD38, low b2m and normal chromes. In the ten years I've been through a partial course of FCR in 2002, when I first got sick and my WBCs were doubling about every ten weeks; then in 2004 I had high dose CR in connection with an autologous stem cell collection (the usefulness of which can be debated)and in 2008 I had a course of FCR-Avastin (to try to knock out the nurse-like cells) when my WBCs got up to about 100K or so. That therapy made me transiently PCR negative for disease, which made me think I might actually be cured! But then, last summer, I found that I had finally developed the widow maker; the p53 mutation, the 17p deletion. Like you, I began developing masses in my neck and axillae. Last February I had a CT which showed numerous masses throughout my abdomen and pelvis, the largest of which was 8cms. By late March the largest had grown to 16cms, so rapidly was my disease progressing. We tried a course of Arzerra to try to hold the disease off for a bit, with initial success in reducing peripheral WBC counts and node sizes, but after about five months, it failed and my nodes began advancing again. I had rather hoped to get into a protocol with Revlimid but got into something better. At the end of March I started participating in a Phase 2 study of PCI 32765 with Rituxan. I'm hoping this is the drug for which you are awaiting a study slot. In my case, at least, the results of the PCI 32765 have been nothing short of astonishing. Within days of starting the drug combination I could feel a difference in how distended my belly was and within four weeks all the palpable masses in my neck and axillae were completely gone. I have now completed two months of therapy and am doing quite well. My platelets which were down to 70K are now back up to 91K and my hematocrit is back to about 38%, from 35 or so. I'll get another CT in about three weeks to see if the masses in my belly and pelvis have resolved but I can tell by the way I feel that they are either completely gone or at a minimum, greatly reduced in size. And there has been nothing of any consequence in terms of side effects so far; just some migratory joint pains, primarily in the small joints of my hands and feet. That is a very small price to pay for the results, at least in the very short term.<br /><br />Well, after that prolonged introduction, let me ask the question which led me to write to you. Do you know which kinase inhibitor was used in the study in which the tumor lysis syndrome resulted? I'm curious, as I would have thought that might have been a problem for someone like me, with a large tumor burden at the onset of therapy. But, in fact, I had next to nothing in terms of side effects.<br /><br />You are from the Phoenix area, are you not? If so, I believe there is a branch of the M. D. Anderson Center out there and I wondered if you were being seen there or not. Just curious.<br /><br />And that's probably plenty for now. Bye now, and good luck with that study. Dave Eckberg, Denton, TexasDave Eckberghttps://www.blogger.com/profile/08992997044938074424noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-33059772189042185762012-05-18T09:34:18.973-07:002012-05-18T09:34:18.973-07:00Thanks for the update, Dave. I've been on WW ...Thanks for the update, Dave. I've been on WW since 2006. I am a teacher, now retired, but in 2007 I had to leave the classroom because a room full of 10 year olds is a viral soup and I was catching everything brought into the room in triplicate. My lymphocytes are now over 125. IVIG therapy is keeping me healthy during cold/flu season but blood clots have become an issue. Thank God for warfarin and pradax.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-13974478066772068122012-05-18T02:35:57.538-07:002012-05-18T02:35:57.538-07:00Hi Dave fingers crossed for the new trial i really...Hi Dave fingers crossed for the new trial i really hope it does the trick . I am on watch and worry , sorry thats watch and wait had my 3 month check in march "12" hematologist consultant, now on 6 monthly checks , diagnosed Aug "11" i asked when treatment did begin what was the alternative to FCR heard it can be very toxic on the body and have a increased (small) chance of changing the make up of the cll cells , the consultant said it was the" Gold star treatment at the moment" in the uk and "newest" . What do you think david ? sorry if already talked it about on previous blogs and appreciate you are busy and have your own worries at this time .<br />Best Wishes <br />Stew ( Student Nurse uk )stew (WORCESTER) UKnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-15173221771188025842012-05-16T04:18:57.019-07:002012-05-16T04:18:57.019-07:00Thank you for the update! My husband has been thro...Thank you for the update! My husband has been through 1st round of FCR Lite, 2nd one coming next week.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-24110511401407660112012-05-10T22:02:39.651-07:002012-05-10T22:02:39.651-07:00Thank you all for your good wishes. I've been ...Thank you all for your good wishes. I've been so busy with work that I've had little time for blogging or much else -- that's a good thing, on the one hand, but it does interfere with getting other things done.<br /><br />Learning the art of patience and adapting to new and changing circumstances is part of the CLL experience. It really is a war of attrition, as Terry Hamblin once put it. I am reminded of World War I and the trench warfare that never seemed to end, with one side gaining a bit here or there, falling back and moving forward. I've fallen back of late, hope to regain lost ground later this year.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-41501147812478380192012-05-07T14:28:36.576-07:002012-05-07T14:28:36.576-07:00Echoing the above sentiment, I'm really glad y...Echoing the above sentiment, I'm really glad you posted an update. I think about you and how you're holding up and am glad you've got a 'plateau' for now, and hope you get into the right trial that will make all the difference in the world for you. My husband was diagnosed with CLL (all the 'bad' markers) and is in the Lenolidamide trial for Stage I untreated and so far so good. My prayer is that you blogging for many, many more years. Please do keep us posted as we truly do care :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-27902357945790700962012-05-07T12:09:05.150-07:002012-05-07T12:09:05.150-07:00I am an unwilling fellow member of the CLL club an...I am an unwilling fellow member of the CLL club and have read your blog posts for awhile. I am relieved to hear that you are hanging in there. I wish you the very best in getting into the clinical trial that is best for you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-45194316631679090972012-05-07T09:14:35.570-07:002012-05-07T09:14:35.570-07:00Thanks for finally writing an update. We worry out...Thanks for finally writing an update. We worry out here in cyberland. <br />Hang in there, Dave. Praying for you and all the other bloggers that help us understand this disease. <br />KayansasAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-53210079747197295942012-05-06T18:31:32.489-07:002012-05-06T18:31:32.489-07:00Is it soup yet...hope you get your portion very so...Is it soup yet...hope you get your portion very soon.<br /><br />Was wondering what was up, so thanks for the update.Anonymousnoreply@blogger.com