tag:blogger.com,1999:blog-19102494.post425029048171799155..comments2023-10-07T07:52:24.587-07:00Comments on CLL Diary: First, the good newsDavid Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-19102494.post-13640888807424106692011-01-01T11:38:31.723-07:002011-01-01T11:38:31.723-07:00Cal-101 and the like can be game changers because ...Cal-101 and the like can be game changers because they can (perhaps) stop the disease from progressing. I know one person who was on the short list for a transplant, who got in the Cal trial and has been pulled off the transplant list, at least for a while.<br /><br />If one can significantly reduce the need for transplants, that would in fact be 'game-changing'.<br /><br />Now if the FDA would just get moving...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-47414044804276122892010-12-13T17:49:42.207-07:002010-12-13T17:49:42.207-07:00"We patients are stuck making a lot of educat..."We patients are stuck making a lot of educated guesses on a playing field that is always changing. Two things are constantly evolving: 1) an individual's disease; and 2) researchers' understanding of the disease, from which we can better identify prognostic tests that have value and treatments that might be effective." <br /><br />Very well put. We also have to deal with keeping up on the therapies out there in clinical trials if we want to make an informed decision. From what I have seen to date, relying on what my doctor advises would be a mistake, even if I wind up doing what he suggests. But at least these days we seem to have some things to chose from....Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-62980244699390080522010-12-11T13:31:46.470-07:002010-12-11T13:31:46.470-07:00Is there any way to chat with you less publicly? ...Is there any way to chat with you less publicly? I love your blog and would like to ask you some questions, but would like to do it without putting info out publicly. If it's possible, could you email me at tashaginet@mac.com<br /><br />Thank you either way!! Thanks for sharing your journey and for thinking out loud with all the important details!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-29839216684554471322010-12-06T17:02:54.683-07:002010-12-06T17:02:54.683-07:00David...it's me again. I agree with everything...David...it's me again. I agree with everything that you say, but I really do worry when people talk about unproven drugs as "game changers" when the published data show Cr and PR rates (albeit in heavily pretreated relapsed patients). When we begin to see results similar to what occurred with Gleevec during it's Phase I trials then we'll be talking about game changing drugs.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-1070946500398442362010-12-05T14:19:48.708-07:002010-12-05T14:19:48.708-07:00The problem is, when your disease is progressing, ...The problem is, when your disease is progressing, you cannot afford to wait for all the data to come in. Seeing whether a drug is effective is an ongoing process; knowing for sure what is a game changer can take years and years if you want to truly nail it down. For example, FCR has been studied and studied but we still don't know what, if any, the survival advantage is over the long term compared to other therapies.<br /><br />We patients are stuck making a lot of educated guesses on a playing field that is always changing. Two things are constantly evolving: 1) an individual's disease; and 2) researchers' understanding of the disease, from which we can better identify prognostic tests that have value and treatments that might be effective. <br /><br />Save for treatments that have been around for decades (chlorambucil, cyclophosphamide, steroids) there is always a gamble involved in picking a course of action. When fludarabine came on the scene in the 1990s, studies showed it provided deeper remissions for more people than chlorambucil. But as time went on, we learned that F users did not have longer survival.<br /><br />Which of today's new drugs will turn out to be disappointments, and which might truly be game changers? If you're around in 10 or 20 years, you might have the answer -- if you can afford to wait that long.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-79872394024959147592010-12-04T12:34:11.223-07:002010-12-04T12:34:11.223-07:00Someone please tell me what I am missing. While we...Someone please tell me what I am missing. While we all certainly hope that drugs such as Cal-101 or the BTK inhibitors may prove to help a great deal where is the evidence that they are going to be game changers? Decrease of nodes to near normal in some patients does not a game changer make. I haven't seen any published evidence that they are particularly effective on the bone marrow. Am I missing something? For that matter, there really hasn't been much published yet to convince one that Revlimid (whether used alone or in combinations with rituximab, ofatumumab, thalidomide, etc) is necessarily a game changer.<br /><br />I hope that I am wrong, but what am I missing? Please educate me & I'll be grateful.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-4787854974204255512010-12-04T02:22:01.161-07:002010-12-04T02:22:01.161-07:00It's good to hear that the Revlimid is working...It's good to hear that the Revlimid is working. I am going to have to start treatment very soon, and I also have 11q-deleted unmutated CLL, as well as bulky nodes, so I am going to be entering a trial that uses Revlimid, Thalidomide, and Rituxan. My goal is to keep the disease under control long enough for drugs like PCI-32765 or CAL-101 to become more readily available (as they seem to be even more significant game-changers than Revlimid) while still avoiding FCR.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-74624584555919327562010-11-23T21:09:07.149-07:002010-11-23T21:09:07.149-07:00Thanks for your thoughts, I wonder how many patien...Thanks for your thoughts, I wonder how many patients will be given an option to choose Revlimid as a first therapy option or directed to the F/PCR approach by "traditional" thinking?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-58385268392129547562010-11-22T13:54:15.345-07:002010-11-22T13:54:15.345-07:00I think Revlimid has broad applications for all cl...I think Revlimid has broad applications for all classes of patients: those being treated for the first time, those aiming to maintain remission after heavy-duty chemo, those who have become refractory to most treatment.<br /><br />I'm in the latter group and I hope that Revlimid will act as a disease control for the foreseeable future. How long is that? Two years? Five years? Ten years? The rest of my life? <br /><br />At the least, I hope it keeps me going until something better comes along (CAL-101?), with which it might even be able to be used in combination. And that this will eliminate the need to consider a transplant. If something like that could be accomplished in a patient with my markers and history, this would be a huge development in CLL. <br /><br />If I were a patient looking for my first treatment, I would seriously consider Revlimid. Obviously, it could act as an effective disease control without many of the downsides of chemo, namely those involving severe immunosuppression and mutations to CLL cells, causing them to be harder to treat. <br /><br />Time and data will tell, but Revlimid is probably going to leave the patient chemo naive, meaning FCR and the like would still be highly workable options as second-line therapy in case it fails. Revlimid does not work for everyone, and not everyone can tolerate its side effects. <br /><br />The bottom line is that I'd rather take my chances with this than with FCR, which I know is going to fail in a few years. In a recent post I posed this question: Knowing what I know now, would I have made the same treatment choice in 2004? The choices then were FCR or single-agent Rituxan. I said I probably would have gone with FCR, although I have no regrets about choosing Rituxan and how it worked out. But had Revlimid been available, I would have chosen it. I think Revlimid is a game-changer.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-82399814956429671622010-11-22T10:47:55.189-07:002010-11-22T10:47:55.189-07:00Hi Dave
I like the name "Revlimidians"....Hi Dave<br /> I like the name "Revlimidians". I think we should start a club or website for us.<br /><br />Your friend and fellow Revlimidian<br /><br />Dave W.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-22988518384723219962010-11-21T21:28:35.553-07:002010-11-21T21:28:35.553-07:00Glad to see the Good News!!
So do you think Revli...Glad to see the Good News!!<br /><br />So do you think Revlimid will become a front line treatment by itself or somehow become part of FCR +R or PCO+ R? <br /><br />Will Revlimid delay the need for heavy chemo extending the treatment clock?<br /><br />Where do you think the journey will end?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-19883722971748572542010-11-21T16:46:42.389-07:002010-11-21T16:46:42.389-07:00I'm on 5 mg and will probably go back up to 10...I'm on 5 mg and will probably go back up to 10 sometime soon. As I've indicated, there was a big bump in the road that I will write about next time. It required that I start low and go slow.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-72369489320296422772010-11-21T16:32:42.789-07:002010-11-21T16:32:42.789-07:00Exactly what dose are you on now...15/mg daily wit...Exactly what dose are you on now...15/mg daily without "rest" periods?Anonymousnoreply@blogger.com