tag:blogger.com,1999:blog-2741672436160438708.post7297910684024384594..comments2024-03-06T05:15:14.324-08:00Comments on Learning from and about cancer (chronic lymphocytic leukemia or CLL) by Dr. Brian Koffman: 'Double Dare' Host Marc Summers Reveals His Bout with CLL (Chronic Lymphocytic Leukemia): Lessons, Errors and OmissionsBrian Koffmanhttp://www.blogger.com/profile/13250684684103918493noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-2741672436160438708.post-28088160787580725842015-02-14T12:35:00.520-08:002015-02-14T12:35:00.520-08:00Thinking about Marc Summers and his interview and ...Thinking about Marc Summers and his interview and what really stands out to me is that someone who seems fairly sophisticated and with enough resources to travel to visit several doctors actually is struggling quite a bit to understand the basics of CLL and possible treatments. This is just another reason why your work is so important, Brian, and why we appreciate so much what you are doing here on your blog and with the CLL Society. There are still so many unmet needs for CLL patients, and easy to understand patient education seems to be one of them. Thanks for all you are doing to make a difference.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-15115078258997316862015-02-12T20:48:40.170-08:002015-02-12T20:48:40.170-08:00I'm also mutated, 13q deleted. What did your d...I'm also mutated, 13q deleted. What did your doctor say the median survival rate is? I neglected to ask my doctor.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-37907900314213546632015-02-12T20:12:41.867-08:002015-02-12T20:12:41.867-08:00Marc is speaking to an audience he believes is ign...Marc is speaking to an audience he believes is ignorant of this disease.<br /><br />He doesn't realize that there are many of us "who have flown the mission"and therefore, appreciate more precise vernacular with accurate detail. <br /><br />It would appear by his description of his disease that he is possibly unaware of our listserve. <br /><br />If so, he should be invited.<br /><br />If, in deed, he has only had rituxan so far, he my be once again be seeking treatment probably sooner rather than later.<br /><br /><br />Sent from my iPadJohn Kleinberghttps://www.blogger.com/profile/15849812220823934008noreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-31623633417569539712015-02-12T11:05:02.101-08:002015-02-12T11:05:02.101-08:00Someone needs to sit down with Marc and have a hea...Someone needs to sit down with Marc and have a heart to heart. Brian? Can you put on your cape and fly out to the rescue?Lynn Shttps://www.blogger.com/profile/10882299474981381772noreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-83402067880486452422015-02-12T08:28:30.497-08:002015-02-12T08:28:30.497-08:00This reminds me of all the ridiculous and erroneou...This reminds me of all the ridiculous and erroneous reporting about Houston Texans owner Robert McNair and his battle with CLL.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-69412495486643963652015-02-12T06:36:17.900-08:002015-02-12T06:36:17.900-08:00Given the inaccuracies in Marc's story I am su...Given the inaccuracies in Marc's story I am sure he left some key information out. He mentions that he is a patient of Dr. Stadtmauer at the University of Pennsylvania. I too am a patient of Dr. Stadtmauer who I went to for second opinion after the local Oncologist told me I had high risk CLL and needed a bone marrow transplant. Dr. Stadtmauer ordered all the standard tests Fish, Flow, Zap 70 and IGHV status. Turned out I was mutated, 13q, low risk and placed in watch and wait. Dr. Stadtmauer told me there was no cure but effective therapies available with new ones in development. He also shared the median survival for my genetics. I would be shocked to find out that Dr. Stadtmauer didn't order the same tests for Marc and told him he was cured. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-82204518884624490622015-02-12T06:16:00.626-08:002015-02-12T06:16:00.626-08:00Wonderful interview but as you say it brings up ma...Wonderful interview but as you say it brings up many questions. He seems to have achieved a long-term remission without a BMT, so that's good. Not everyone is so fortunate. Is it that hard to diagnose CLL? My family doc pegged it right away for me after one blood test and my CLL docs (two so far) have been first rate. If (or when) I ever get the "6 months" talk I hope I can give thanks for every minute I have been blessed with. Bone marrow biopsy? I barely felt mine, but I think it is a skill honed by much practice. And finally, I have to agree with his decision to disclose his illness only on a "need to know" basis. The factor for me is simple - I don't want to be the topic of every conversation I'm in for the rest of my life. CLL, like baseball, is a game of inches. I don't want to bore everyone or myself with the latest inch. It's a buzzkill. Anonymousnoreply@blogger.com