tag:blogger.com,1999:blog-2741672436160438708.post7429728658868637175..comments2024-03-26T12:50:32.070-07:00Comments on Learning from and about cancer (chronic lymphocytic leukemia or CLL) by Dr. Brian Koffman: Getting the right doctor can save your lifeBrian Koffmanhttp://www.blogger.com/profile/13250684684103918493noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-2741672436160438708.post-4524330053899669262011-09-07T21:31:52.920-07:002011-09-07T21:31:52.920-07:00Hi from Oz, Brian! Still reading your blog. Alis...Hi from Oz, Brian! Still reading your blog. Alison.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-42344576007661192042011-09-03T05:13:52.343-07:002011-09-03T05:13:52.343-07:00I'd be dead by now (or wish I were) had I acce...I'd be dead by now (or wish I were) had I accepted Clive Zent's invitation at the Mayo Clinic in 2005 to join his Campath and Rituxan study. See Chaya's views regarding the outcome of the study.<br /><br />Following my declining to participate in the study I describe above, Dr. Zent's formal recommendation to my GP was of PCR then subsequent BMT, and was just as lame. See CLL Diary dated Sept. 1, 2011 by David Arenson.<br /><br />While I agree that "Getting the right doctor can save your life," Dr. Koffman, you are wrong about the CLL specialist.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-59345855266208922892011-09-03T03:15:35.354-07:002011-09-03T03:15:35.354-07:00Friends,
Many were disturbed by the minimal 1.3 ye...Friends,<br />Many were disturbed by the minimal 1.3 year different between TTFT and OS.<br />Good questions!<br />This is the way I understand it.<br />You are conflating the statistics. The average TTFT was 9.2 so some went 6 months and some went 10 years.<br />Same kind of numbers with the OS. Some patient probably died in the first year and many are still alive. Could be that one was treated at 6 months died at a year and another treated at 2 years is still alive. And some may have died before any treatment. <br />In other words, the mean OS is 10. 5, the mean TTFT is 9.2, but that does not not tell us how long the average persons survives after first treatment. They are not tightly linked. You can die with no treatment. Another factor that is really driving the finding is that at 10 years out, the majority of patients were both still untreated and alive in the expert group (but not in the non-expert group). It is those patients that are are contributing big time to the statistics.<br />Does that help? It is a bit more complicated. The article is worth getting to read to get the details. Read it and tell me what you conclude.<br />Be well<br />BrianBrian Koffmanhttps://www.blogger.com/profile/13250684684103918493noreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-5407107505823528602011-09-01T16:40:52.910-07:002011-09-01T16:40:52.910-07:00Why do we have to call breast cancer a common dise...Why do we have to call breast cancer a common disease? My Mother died 31 years ago of this dreaded disease, at age 50. I'm now 60 and 4 years ago I was dx. with it and just last month my second sister was dx. My two remaining sisters are wondering who's next. I know you are asking, "are we BRACA 1 & 2 positive?" The answer is no. We have been tested at City Of Hope. When is our country going to do something about this. ENOUGH IS ENOUGH.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-41832712648083024402011-08-31T19:17:19.772-07:002011-08-31T19:17:19.772-07:00Brian:
One of the authors is my hem/onc and I spea...Brian:<br />One of the authors is my hem/onc and I speak with experience when I tell you he is not up to date on vaccines: flu, pneumonia etc. Instead, he relies on in-house infectious disease docs which also are not fully up to date. That is why I bounced the issue of flu vaccine dose off you. I find exchanges with people with similar problems to be more fruitful than with one's doctors. Not seeking medical advise as you thought just your ideas, experiences etc.<br />Just so you know, my situation is doubly complicated because I am a CLL patient and a care giver to my wife who has multiple myeloma: lucky us having 2 B-cell cancers. Thus, I have two souls I am trying to protect and any feedback is welcomed.<br />TomDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-26780907640382290822011-08-31T17:16:09.580-07:002011-08-31T17:16:09.580-07:00Brian,
The numbers leave me perplexed and perhaps ...Brian,<br />The numbers leave me perplexed and perhaps your doctor's view can help. If the median TTFT is 9.2 years and median OS is 10.5 years, it would seem the average time from treatment to death is 1.3 years. Clearly, this is not correct, as once someone who has gone 9 years without treatment is treated, they could usually, barring a very bad (and unusual) situation, expect, several years more. Probably a "median" of 3-7 years, from first treatment to the end. How do you account for the short interval btwn 9.2 ys TTFT and 10.5 yrs OS?<br /><br />Thanks, HeléneAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-76809991734402189282011-08-30T19:10:08.155-07:002011-08-30T19:10:08.155-07:00Brian,
Can you explain - TTFT is 9.2 yrs median an...Brian,<br />Can you explain - TTFT is 9.2 yrs median and OS is 10.5 yrs median. Which appears to say that the median survival time after first treatment is 1.3 yrs. Clearly, that cannot be right!. Someone treated for the first time after 9 years generally has a few years at least! I'd appreciate some light shed on this.<br /><br />Thanks, HeléneAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-42946770251433395962011-08-30T09:29:43.362-07:002011-08-30T09:29:43.362-07:00Wow! That's about a 25% survival advantage, an...Wow! That's about a 25% survival advantage, and these were hematologists. Imagine how much worse it would have been for general oncs.<br />I picked my local hem/onc because he's one of the smartest guys I've ever met and he's also thrilled to share me with a specialist.<br />Very interesting.Jennhttps://www.blogger.com/profile/08650369159824539210noreply@blogger.com