tag:blogger.com,1999:blog-19102494.post676393159308745008..comments2023-10-07T07:52:24.587-07:00Comments on CLL Diary: If pigs could fly, we'd all choose the perfect treatmentDavid Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-19102494.post-15667222226240123312010-11-15T20:10:53.383-07:002010-11-15T20:10:53.383-07:00Tara,
There are three sites where you can easily ...Tara,<br /><br />There are three sites where you can easily get up to speed with the help of other patients. One is CLL Forum, one is the ACOR CLL List, and one is CLL Topics (now CLL Topics Updates). <br /><br />Best of luck,<br /><br />DavidDavid Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-84504848856524495132010-11-01T23:30:59.530-07:002010-11-01T23:30:59.530-07:00I am so Lost. I am 29 yrs old & I was diagnose...I am so Lost. I am 29 yrs old & I was diagnosed with SLL in April 2010. The doctors at Duke University say they believe I have CLL but my doctors here have not done a bone marrow test to be positive. <br /><br />I already did a single round of R between May & June and it barely helped. I am starting FCR today & I am terrified. I have read your blog before but this one has me very very lost. I do not understand a lot of the letter/number combinations.Can you maybe explain those a little to me please?<br /><br />Thank You for sharing your story & taking time out of your day to share it.<br /><br />~Tara (in NC)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-31692665894604805342010-10-29T13:05:36.832-07:002010-10-29T13:05:36.832-07:00>>As I recall, the FCR arm of the German Stu...>>As I recall, the FCR arm of the German Study shows a paltry 3% survival advantage over the FC arm<br /><br />Actually it is 4% David, but that is meaningless! Lets see what the data says at 5 years. Bet the FC arm is better than the FCR arm.<br /><br />The important figures to notice in this study is the difference in side effects, particularly Grade 3 and 4, between the two.<br /><br /> FCR FC<br /><br />Adverse Effects Overall Grade 3-4 76% 63%<br />Side Effect: Grade 3-4 neutropenia 34% 21%<br />Side Effect: Grade 3-4 leucocytopenia 24% 12%<br /><br />(by the way Grade 5 side effect is death)<br /><br />I suspect the FC group in remission is out enjoying life, getting into car accidents and falling off cliffs and that is why there is a difference of 4% in OS.<br /><br /> The FCR group on the other hand are in bed nursing shingles outbreaks, pneumonia, thrombocytopenia, etc etc etc. These folks are to ill to fully participate in life on on a regular basis.<br /><br />It is about quality of life... not just quantity of life...~chrishttp://cllcanada.canoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-49047612393609331582010-10-25T20:11:46.338-07:002010-10-25T20:11:46.338-07:00There are some thoughtful, interesting responses h...There are some thoughtful, interesting responses here that show just how tricky all this decision making can be. <br /><br />BTW, I'm not kvetching. I'm simply playing a game of "what if," which I think most of us play from time to time, as a way to illustrate the difficult choices we face. Imagine trying to play a game where the rules are constantly changing and you'll be "playing CLL." <br /><br />Whether I would have been better off with FCR, I'll never know, but I don't regret my choices. <br /><br />In the coming weeks I'll have more to say about Revlimid. This "sleeker, cooler" designer drug just might prove to be an alternative to transplant for some of us. <br /><br />I am also intrigued by CAL-101 and have heard great things about its node-reduction capabilities. It's several years from FDA approval (if all goes well) but could prove to be an important tool in the arsenal.<br /><br />When playing the game, it helps to look at what may be on the horizon to help you. CLL is all about playing for time.<br /><br />It's also important to know when your clinical symptoms tell you to act decisively. This can be extremely tricky in some cases. I have been fortunate in that my clinical symptoms have been better than my prognostics, allowing me to take a slower approach to treatment. Not that I haven't been advised by experts, both medical and layperson, to have done more faster, but I haven't seen the survival advantage in it. <br /><br />Yes, you take a chance by reacting to the disease as opposed to being proactive, but you take a chance when being proactive, too. A lot of those transplants fail. "Killer chemo combos" like FCR may fail, too, and even when they lead to a remission they may fail to provide a meaningful survival advantage. As I recall, the FCR arm of the German Study shows a paltry 3% survival advantage over the FC arm after something like 3 years. That's not much of a bandwagon to jump on given the risks involved.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-27894117859950829362010-10-23T09:51:24.068-07:002010-10-23T09:51:24.068-07:00Hey, dude, you have avoided FCR and the risk of Ri...Hey, dude, you have avoided FCR and the risk of Richter's and MDS. Why kvetch about it? I wish I had avoided that fate.<br /><br />There are SO MANY choices for CLL now, why risk it? WHY????<br /><br />In that regard, I envy you.<br /><br />BTW I penned that response to Hamblin, which you probably guessed.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-88044310376342517612010-10-20T10:30:39.880-07:002010-10-20T10:30:39.880-07:00This is a great synopsis of the challenges in maki...This is a great synopsis of the challenges in making the best treatment decisions with CLL. It's hard to explain this to anyone who has no understanding of the disease. It behaves so very differently in every patient and responses are varied as well. <br /><br />Hindsight is 20/20 and you know going into anything that you may regret the choice you've made or see clearly (in hindsight) what would have been the better option. But we never know on the front end. <br /><br />After trying Rituxan as single agent in 2008 and getting very little results, my husband decided to go ahead to FCR (plus experimental Lumiliximab) in 2009. We have an excellent specialist, Dr. Ian Flinn, in Nashville. He believed John would get a good response to FCR; maybe several years of remission. I feared he would be one of those patients who didn't get the long remission. But I didn't expect what happened.<br /><br />My husband failed FCR. (He is 13q, Zap 70- and CD38-, but unmutated). His blood has never been the problem. His problem has been very large lymph nodes. There was good reason to expect positive results from FCR. But he got nothing. And we started talking about transplant because failing FCR is not good news.<br /><br />I wondered how we could know that he would have a successful transplant after completely failing FCR. Fortunately, having failed FCR so quickly qualified my husband for a phase 1 clinical trial with CAL-101. He was one of the last CLL patients accepted into that study with CAL-101 single agent and at the lowest dose (50 mg.). It was closed to new patients within days of his acceptance. And it has worked like a miracle drug for him (so far). The nodes have shrunk and his blood is perfect. He began treamtment May 27 and responded immediately (within days).<br /><br />So looking back, we would have avoided FCR if we could have known he would not get even a partial remission. But failing FCR got him the lowest dose of CAL-101 single agent, which he will be able to receive for as long as it's working for him (no matter what happens overall with the trial). So there is definitely a silver lining in our case. But without my strong faith in God and His sovereignty in our lives, I could only look at these decisions as a roll of the dice.Sharihttps://www.blogger.com/profile/01930041548159037405noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-92186026702043509662010-10-16T15:56:15.856-07:002010-10-16T15:56:15.856-07:00David,
As always, very thoughtful Your question ab...David,<br />As always, very thoughtful Your question about whether early FCR would have changed things will never be answered. What interests me more is will one of the new therapies in trial or used off label such as CAL 101, Revlimid, ABT263, TRU-016, or any of a score of other molecules will create an alternative to a transplant as a path to a long life? If the answer is no, we will know soon, if yes, it is many years away. So if you are going for the long haul, you are deciding between a nasty but potential effective transplant versus a sleeker cooler, but unproven "designer" drug. That is the choice many of us face. Be well<br />Brian http://bkoffman.blogspot.com/Brian Koffmanhttps://www.blogger.com/profile/13250684684103918493noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-60225194026708654232010-10-14T13:52:19.566-07:002010-10-14T13:52:19.566-07:00Mark,
If you look at CLL Forum or ACOR, you will ...Mark,<br /><br />If you look at CLL Forum or ACOR, you will see posts about some of the top names and centers. In the USA these include UC San Diego (Kipps, Castro); MD Anderson (Keating, O'Brien, Weirda); Ohio State (Byrd), Mayo Rochester, MN (Kay, Call, Zent, Shanafelt) and Dr. Kanti Rai at Long Island Jewish Hospital. These come to my mind as the top of the list, though I've no doubt forgotten some. Among this group, some are more conservative about treatment than others. Dr. Terry Hamblin is retired in the UK and makes himself available on patient forums and through his blog.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-2503883369839383992010-10-11T11:33:30.997-07:002010-10-11T11:33:30.997-07:00David,
Who are the top CLL guys? I don't thin...David,<br /><br />Who are the top CLL guys? I don't think those names are clear to the patient community.<br /><br />Markmshttps://www.blogger.com/profile/11403935422165815145noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-34304525303968927892010-10-11T07:09:52.446-07:002010-10-11T07:09:52.446-07:00This is an excellent summary of the dilemma of how...This is an excellent summary of the dilemma of how to (or not to) approach the treatment of any medical problem in which the problem, the treatment and the outcomes are not clear-cut from the get go.<br /><br />Many people wandering cyberspace in search of answers about what to do regarding their CLL do not grasp the reality that even the experts really don't know what the right approach is in most (if not all) instances.<br /><br />The experts certainly want to do the best thing for everyone that they deal with as do most doctors, but there are too many uncertainties and "X-factors' which can send any decision path awry.<br /><br />People need to understand that any therapeutic choice (including the choice to do nothing) should be based on an evaluation of the upsides and downsides, because everyone is operating in a Casino Royale and there are no certain choices or certain outcomes.<br /><br />My suggestion for everyone is to evaluate all decision points reasonably, be 'nimble" on your feet and always to remember that "they can kill you, even when they mean to help you".<br /><br /><br />A CLL traveller with 11q- who deferred FCR based on best information in 2008 and needed it in 2010 only to nearly die from severe AIHA and PRCA who still doesn't (and by my philospophy, shouldn't) have a concrete plan going forward.Anonymousnoreply@blogger.com