tag:blogger.com,1999:blog-3165131923857031708.comments2023-08-28T02:56:25.402-07:00Dr. Sharman's CLL & Lymphoma BlogUnknownnoreply@blogger.comBlogger93125tag:blogger.com,1999:blog-3165131923857031708.post-40509096085690369332017-04-13T12:26:03.093-07:002017-04-13T12:26:03.093-07:00As a 15-+-years Chronic Lymphocytic Leukemia (CLL)...As a 15-+-years Chronic Lymphocytic Leukemia (CLL) patient who has participated in a clinical trial under Dr. Sharman's wise guidance, I can attest to the bright hope that the results of some trials offer. What has already changed for me is a shift in the baseline of expectations from "hope" to "of course this is going to work." But of course there are cautions that somewhat dampen that shift. For example, the newly approved drug I am now on, while working very well after the trial drug stopped working, has caused some side effects, and as Dr.Sharman cautions, these new drugs have not been on the market long enough to know what all of the side effects might be in the long run, or the potential severity of these side effects. Still, I appreciate the ongoing efforts, finding for myself that the benefits far outweigh the risks. Davidhttps://www.blogger.com/profile/09136921249701999061noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-44358402114305708902017-03-16T07:23:35.039-07:002017-03-16T07:23:35.039-07:00Interesting topic for a blog. I have been searchin...Interesting topic for a blog. I have been searching the Internet for fun and came upon your website. Fabulous post. Thanks a ton for sharing your knowledge! It is great to see that some people still put in an effort into managing their websites. I'll be sure to check back again real soon.buy backlinkshttps://www.blogger.com/profile/08010110060210863163noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-33560772700335168502017-01-30T07:34:05.116-08:002017-01-30T07:34:05.116-08:00You made some decent points there. I looked on the...You made some decent points there. I looked on the net to the issue and located most individuals is going coupled with with all your internet site. You need to get involved in a contest for one of the most useful blogs on the web. I’m going to recommend this web site to my friends!OptimiZed 360http://optimized360.comnoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-33147337448598554372017-01-29T06:22:39.636-08:002017-01-29T06:22:39.636-08:00I just viewed your Patient Power Video regarding P...I just viewed your Patient Power Video regarding Poor outcomes with any Ibrutinib interruption. I've been taking Ibrutinib for 3 years with excellent results. I was recently diagnosed with prostate cancer and I'm starting radiation therapy in a week. The treatment is once daily for eight weeks. I was told to stop taking Ibrutinib during the radiation treatments. The explanation was, "because of the volume of blood circulation in the area of the prostate CLL cells would be radiated". However, after watching your Patient Power video regarding poor outcomes with Ibrutinib interruption I'm concerned about stopping Ibrutinib for 2 months. Your thoughts please. Thanks David TiptonUnknownhttps://www.blogger.com/profile/06378504794539029055noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-13405569831028342892017-01-12T07:09:47.164-08:002017-01-12T07:09:47.164-08:00Really appreciate the post. I've been followin...Really appreciate the post. I've been following you for 5+ years. Will soon enter the Dana Farber combination trial on ibruntinib plus obinituzimab, hoping to advance knowledge.Ted Whttp://googlenoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-59070615404847934252017-01-08T04:53:00.154-08:002017-01-08T04:53:00.154-08:00Newly diagnosed with CLL, I found your presentatio...Newly diagnosed with CLL, I found your presentation both informative and encouraging. Thank you for sharing!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-11031875687545508192016-12-14T11:09:22.003-08:002016-12-14T11:09:22.003-08:00Very many thanks for this - so clear and informati...Very many thanks for this - so clear and informative. Very good timing for me as I try to make a decision about retreatment.<br />Thanks to everyone involved.<br /><br />MaryCAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-74890261796992028012016-12-09T08:36:44.233-08:002016-12-09T08:36:44.233-08:00As always, your knowledge, experience, and ability...As always, your knowledge, experience, and ability to share ideas with clarity is appreciated. <br /><br />Your comment about negative overall effects for those who stop Ibrutinib for 8 days or more is disconcerting. I'm wondering what that mean for those of us who are told to stop Ibrutinib for 3-7 days prior to and following surgery? And what does it mean that cessation of Ibrutinib causes negative outcome? That the drug stops working for that patient, or maybe that patient doesn't have a chance of reaching MRD in the long haul?<br /><br />As I prepare for cataract surgery, I am told to stop Ibrutinib for 3 days before and after. Since the eyes are done separately, anywhere from 1 to 4 weeks apart, that means two close together cessation periods of a week each. Due to Ibrutinib, I'm guessing it will take my first eye longer to heal than the usual week. If that is true, and given my doctor's schedule, I'm anticipating a 4 week interval between the surgeries. <br /><br />This leads to the quandary of whether it would be better to stop Ibrutinib once for 14 days, should the first eye be sufficiently healed to do the second eye a week later, or whether it would be better to have two 7-day cessations a few weeks apart. <br /><br />Yes, Ibrutinib is great in melting nodes away and improving labs and energy. The bleeding risk adds to questions about managing life. A bruise from a stick hitting my upper calf while gardening 10 weeks ago, which formed a hematoma and spider web bleed down my leg, is still not completely healed, so I know healing is slow.<br /><br />I look forward to your continued gathering and dissemination of information about the various CLL treatments, their success value relative to a patient's DNA, and potential outcomes. <br /><br />Thank you for your passion and diligence!scribelainehttps://www.blogger.com/profile/14837866456491566791noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-13628236062777203622016-12-08T15:18:35.008-08:002016-12-08T15:18:35.008-08:00Great video guys! Thanks for your commitment to u...Great video guys! Thanks for your commitment to us. I was diagnosed with SLL in 2013. Started with Rituxan & Revlimid in Jan 2014 & switched to Ibrutinib in April 2014. Continuing to do well after 2-1/2 yrs on IBR. As Andrew said, "God speed to you in your research." LongTallTexanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-25129367443291947422016-12-08T14:05:55.637-08:002016-12-08T14:05:55.637-08:00I really appreciate all you do for the CLL communi...I really appreciate all you do for the CLL community Dr. Sharman and I will echo the comments of others who have mentioned how much you have helped them deal with the stress of this disease. You can be counted on to provide an informed, up to date and honest perspective on issues that are so important to so many of us. Thank you very much.Doug Mnoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-8673757814917064102016-12-08T03:17:49.696-08:002016-12-08T03:17:49.696-08:00Excellent discussion and certainly clarified a few...Excellent discussion and certainly clarified a few points for me.<br />Thanks for the opportunity to view and listen<br />Regards<br />MikeAnonymoushttps://www.blogger.com/profile/16014222584518697937noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-698627970330168612016-12-08T01:55:01.941-08:002016-12-08T01:55:01.941-08:00thank you for taking to time to post this video. ...thank you for taking to time to post this video. I am newly diagnosed early stage CLL - it was a dreadful experience and I was told little by consultant whose only response was" i cant deal with this today I have a full clinic". I have found out so much from your video and now feel empowered to face my disease.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-80557700956128836362016-12-07T11:02:41.950-08:002016-12-07T11:02:41.950-08:00This comment has been removed by the author.Anonymoushttps://www.blogger.com/profile/07112622414601247543noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-9154904721751544122016-08-27T11:27:49.791-07:002016-08-27T11:27:49.791-07:00Thanks for the highly beneficial post. it explains...Thanks for the highly beneficial post. it explains aLot. Where this medicine can be procured particularily when patiengs belong to non accessible countries.or those country where this hasnt been launched yet.mozocarehttps://www.blogger.com/profile/14441403674634266881noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-20931540922616587902016-04-30T19:43:24.624-07:002016-04-30T19:43:24.624-07:00Excellent overview. Thanks.
Dr. Brian Koffman
http...Excellent overview. Thanks.<br />Dr. Brian Koffman<br />http://cllsociety.orgBrian Koffmanhttps://www.blogger.com/profile/13250684684103918493noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-60260419297523251532016-04-13T20:39:02.265-07:002016-04-13T20:39:02.265-07:00Great news!!! I really hope you can find time to p...Great news!!! I really hope you can find time to post more about it Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-22501808701975613032016-04-13T20:03:00.871-07:002016-04-13T20:03:00.871-07:00Hey Doc, would love to see a post comparing Veneto...Hey Doc, would love to see a post comparing Venetoclax to Imbruvica for us if you can. Details of the differences and response rate comparisons would really be awesome for us non medical folks. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-59729132501201068282016-04-11T17:27:29.559-07:002016-04-11T17:27:29.559-07:00Find the time! Thoughts on Combinations, which dr...Find the time! Thoughts on Combinations, which drug first etc.? Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-20208772165779625282016-03-17T15:46:41.066-07:002016-03-17T15:46:41.066-07:00Thank you for clarifying this latest Idelalisib ne...Thank you for clarifying this latest Idelalisib news. I just learned more from you than I have from my study team. You have a great way of making things comprehensible. Thought my journey might provide interesting follow-up. <br /><br />Since August 2014 I have been in one of the now closed trials for treatment-naive CLL: Idelalisib combined with 12 doses of Ofatumumab through cycles 3-8, with incredible results. I was one of the lucky patients to have NO side effects from Idelalisib, unlike the majority of patients in my trial -- low ALT, no intestinal issues, no infections. Just melting nodes and increased energy. It was hypothesized that my success was due to high CLL involvement in my bone marrow when the trial began. My labs peaked in October 2015 and have been drifting downward, making me wonder if the drug was no longer working for me.<br /><br />Last Friday, I was told to stop the study drug. By Sunday, I was feeling tired. Monday and Tuesday, I was nonfunctionally exhausted. Monday night I awoke with sharp pains in my left arm pit. By morning, large swollen nodes that had melted away over a year ago had resurfaced. Nodes on the sides of my neck are growing back, now lentil sized. I feel more clear-headed today (Thursday), and tire easily if I try to do something other than sit.<br /><br />Frustrating when the Idelalisib was clearly keeping CLL cells at bay. My hematologist cites cases of regrowing nodes after stopping Ibrutinib, which sometimes recede on their own. We are both surprised at the speed of symptoms. Next step is to figure out what is next. Would be great to hear from others to learn of other experiences.scribelainehttps://www.blogger.com/profile/14837866456491566791noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-80284274142976366912016-03-03T08:46:50.090-08:002016-03-03T08:46:50.090-08:00The median age of CLL patients is somewhere in 65 ...The median age of CLL patients is somewhere in 65 - 70. I wonder if NICE is looking at this group and saying "Their productive years are over. Let us not spend on them".Anonymoushttps://www.blogger.com/profile/09629864722164494016noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-29808762261403625862016-03-03T05:32:08.672-08:002016-03-03T05:32:08.672-08:00$78,000/year. Wouldn't we love to see the actu...$78,000/year. Wouldn't we love to see the actuarial numbers behind some of the pricing of these drugs? Anonymoushttps://www.blogger.com/profile/03627578620185100359noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-64447295987399362692016-03-02T11:57:22.885-08:002016-03-02T11:57:22.885-08:00The British NHS, like most social programs in the ...The British NHS, like most social programs in the UK, has been slashed to ribbons by years by "austerity measures." I would suggest this situation is not uninvolved in the British decision. In Canada, where we have a single payer system, the novel agents, such as Ibrutinib, are generally available at no extra cost to the patient (health insurance is managed at the provincial level, here). Arguably, a broader and more nuanced sample of the performance of state run health care regimes in the developed world (Germany?) would lead to the thoughtful discussion you call for.Bryan Senteshttps://www.blogger.com/profile/04989715661418188351noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-7316899114146068982016-01-22T11:14:17.010-08:002016-01-22T11:14:17.010-08:00Thank you for taking the time to write this blog. ...Thank you for taking the time to write this blog. I am hoping to hold on to my current remission (s/p FCR in 2011 and bendamustine/rituxan in 2015) until the very best BTK treatment relative to my high risk factors has been developed. Your blog has been very informative and encouraging to me.Anonymoushttps://www.blogger.com/profile/02868527290464249057noreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-49662711319372168642015-12-22T00:37:17.169-08:002015-12-22T00:37:17.169-08:00Very informative and so well explained - I've ...Very informative and so well explained - I've learnt a lot, thank-you!Rachel from UKnoreply@blogger.comtag:blogger.com,1999:blog-3165131923857031708.post-20837119585290062052015-12-11T10:55:07.241-08:002015-12-11T10:55:07.241-08:00An excellent video. Dr. Sharman clearly stated the...An excellent video. Dr. Sharman clearly stated the the basics of high risk CLL! I learned a great deal from this video. <br />Thank you very much !stgeorgeracinghttps://www.blogger.com/profile/15710121198833146405noreply@blogger.com