tag:blogger.com,1999:blog-25131597.comments2023-10-16T06:07:34.852-04:00Jon's CML DiaryJon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.comBlogger201125tag:blogger.com,1999:blog-25131597.post-63777478434339469442014-08-16T21:53:15.085-04:002014-08-16T21:53:15.085-04:00just read your blog...i was dx in 2003 & have ...just read your blog...i was dx in 2003 & have been on gleevac 400mg/600mg pretty much since dx. lately, i am having intense bone pain & although my levels are normal, my NP advised me to start researching the other 2 drugs.. i am scared, don't want to rock the boat but really starting to go down hill.loved reading your blog..thx for posting<br />rose <br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-25131597.post-18011899928918611212014-07-02T14:21:14.252-04:002014-07-02T14:21:14.252-04:00So happy to read this update, Jon! Your long-term...So happy to read this update, Jon! Your long-term durable treatment response is an ongoing source of hope for me and many other CML patients. I especially like the fact that your trips to Portland are basically vacations. :-) Keep it up!Danhttps://www.blogger.com/profile/13394698900619527275noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-56097139600723685082014-06-04T14:47:23.910-04:002014-06-04T14:47:23.910-04:00We are all grateful for your good results. We are all grateful for your good results. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-25131597.post-64083969247462825202014-04-19T15:03:24.852-04:002014-04-19T15:03:24.852-04:00Hi Jon
My mother diagnosed with CML 1 month ago. s...Hi Jon<br />My mother diagnosed with CML 1 month ago. so i start to research about it. I read all of your blog posts in two days. i am very happy for you and your traetment process.<br />i think you have been an expert in CML. so I have a question. have you any fresh information about stopping gleevec in CML Patients? who can stop this med and how many percents of people relapse?<br />thak you very muchhassanhttps://www.blogger.com/profile/14703487963732745001noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-50392218985613267592013-11-03T11:42:24.321-05:002013-11-03T11:42:24.321-05:00Great news, Jon. Just in time for the holidays to...Great news, Jon. Just in time for the holidays too!Danhttps://www.blogger.com/profile/13394698900619527275noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-41921336013617255262013-11-03T11:40:17.377-05:002013-11-03T11:40:17.377-05:00Great news Jon. Just in time for the holidays too...Great news Jon. Just in time for the holidays too!Danhttps://www.blogger.com/profile/13394698900619527275noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-33418878369520138842013-10-08T13:47:11.890-04:002013-10-08T13:47:11.890-04:00Hi Jon - just looking for CML bloggers. My son was...Hi Jon - just looking for CML bloggers. My son was dx'd in 2008 when he was 10. His last pcr (from molecular md too) showed a 5-fold transcript jump. We're heading out to see Dr. D in a couple of weeks (yeah, really miss Carolyn!!!! will be meeting the new gal soon.) We may be switching to Nilotinib if my son (teenager) can deal with fasting. Anyway - best wishes to you. I'll be checking in again. Write some more!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-25131597.post-89560636410142998252013-09-17T20:32:32.082-04:002013-09-17T20:32:32.082-04:00Any updates or further info?Any updates or further info?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-25131597.post-77190542739476817672013-06-12T03:51:12.994-04:002013-06-12T03:51:12.994-04:00I hope it will all go well for you; my son was put...I hope it will all go well for you; my son was put onto 600mg Gleevec from Day 1, and has done very well on that dose.I don't think there are any plans to lower it,after just 2 years.<br />Yes, it's a serious disease, and it's horrible that anyone has to have it, but as people keep saying to me, this is a controllable condition, and there are options.<br />I will check your blog, as I have been since I found it! - because you are the same age as my eldest daughter.Maureenhttps://www.blogger.com/profile/02383223698959645624noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-36045888787512379052013-06-06T18:08:52.742-04:002013-06-06T18:08:52.742-04:00Hang in there Jon - yes, I still follow your blog....Hang in there Jon - yes, I still follow your blog. :) Thank goodness we have options, so if Gleevec 600mg doesn't do the trick, then one of the other TKIs will. Your PCR is still a solid MMR (mine was at 0.08% IS after 2 years of 400mg and doc's orders were to stay the course), so as long as you stabilize with at least one zero to the right of the decimal point, you'll be fine. Take care!Danhttps://www.blogger.com/profile/13394698900619527275noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-64425374239175799852013-04-29T08:19:34.064-04:002013-04-29T08:19:34.064-04:00Happy 40th birthday. Its good to hear that you spe...Happy 40th birthday. Its good to hear that you spent time with yourself and your family. Thanks for sharing information.cancer center tulsahttp://www.empowereddoctor.com/8019/cancer-treatment-center-tulsa/noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-55334734996445346772012-11-07T06:03:39.644-05:002012-11-07T06:03:39.644-05:00Happy Birthday! - 40 is just the beginning these d...Happy Birthday! - 40 is just the beginning these days. My son was diagnosed last year at only 28, I no longer wonder whether he will reach 30 - but 40 for him is a very long way down the track.....it terrifies me.Maureenhttps://www.blogger.com/profile/02383223698959645624noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-52202925805733579952012-11-06T05:48:39.744-05:002012-11-06T05:48:39.744-05:00Happy 40th Jon - you look great, man! I couldn...Happy 40th Jon - you look great, man! I couldn't agree more. It's great to be "upset" about celebrating your 40th, because it means you are healthy and around for your wife & kids, which is what matters. I count our blessings every day for the magic of TKI therapies and what they've done to transform CML. Keep up the great life, and the great response. I hope to continue following in your shoes...Danhttps://www.blogger.com/profile/13394698900619527275noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-33412234123922665452012-05-24T23:40:51.692-04:002012-05-24T23:40:51.692-04:00Hi Jon,
I'm a former patient (from more than ...Hi Jon,<br /><br />I'm a former patient (from more than ten years ago!) who Googled you to see what you're up to these days.<br /><br />Sorry to see that you were diagnosed with CML, but very happy to hear that your numbers are now good, so you can go on with your life with guarded optimism under the excellent care of DFCI and Dr. Druker in Portland.<br /><br />Wishing you continued success in your fight.<br /><br />-RDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-25131597.post-49302943908718325802012-05-13T06:18:41.324-04:002012-05-13T06:18:41.324-04:00I would just like to let you know how your openess...I would just like to let you know how your openess about your CML journey has helped me. I was diagnosed 10/27/2009 when I was 19, my story has been very similar to yours. My sister wasn't a match for me and when they checked the registry they couldn't find a match there either. I have also been switched to Tasigna because Gleevec was not working for me. Good luck with your journey, I will be waiting to read any new updates from you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-25131597.post-41566227221651889932012-03-03T22:17:10.007-05:002012-03-03T22:17:10.007-05:00You are doing great, Jon. Keep it up!You are doing great, Jon. Keep it up!Danhttps://www.blogger.com/profile/13394698900619527275noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-297629785563644212011-12-27T21:16:33.617-05:002011-12-27T21:16:33.617-05:00Wow Jon, that is quite a story about your fraterni...Wow Jon, that is quite a story about your fraternity brother. We are lucky indeed. I am considering starting to see Dr. Druker at the one-year point -- if anything, I would want the most accurate PCR possible. :). Here's to a great 2012 for you and continued great response to Gleevec. You are an inspiration!Danhttps://www.blogger.com/profile/13394698900619527275noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-33408885207277318632011-07-24T14:35:21.723-04:002011-07-24T14:35:21.723-04:00Dang! I was jusr in Portland, too. Would have love...Dang! I was jusr in Portland, too. Would have loved to take the Chocolate Tour with you!Michelehttps://www.blogger.com/profile/18185513255737012093noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-8684408834765178712011-05-30T01:56:08.486-04:002011-05-30T01:56:08.486-04:00I think the medicine has helped the patients and i...I think the medicine has helped the patients and is a great find for the disease.Atlanta cosmetic surgeryhttp://www.johnconnorsmd.com/noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-64581203386825155412011-05-21T19:49:04.172-04:002011-05-21T19:49:04.172-04:00We always love hearing about your great results Jo...We always love hearing about your great results Jon!!!!! Chocolate<br />balsamic vinegar...oh my!<br /><br /> Wanda & DanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-25131597.post-60686079328652590802011-05-19T11:15:10.681-04:002011-05-19T11:15:10.681-04:00Jon,
Despite the weather a great doctors appointme...Jon,<br />Despite the weather a great doctors appointment is always something to celebrate and what better way then with chocolate.<br />It is interesting hearing about people who have come off the TKI's and are doing well. Maybe someday we all can come off the drugs and not have to worry.<br />Enjoy your good news,<br />ChuckChuckhttps://www.blogger.com/profile/03928065174098383679noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-48102136462762062502011-04-12T08:22:36.336-04:002011-04-12T08:22:36.336-04:00Dan,
Thanks for writing. Please email me back cha...Dan,<br /><br />Thanks for writing. Please email me back channel so we can chat some more.<br /><br />JonJon Gershonhttps://www.blogger.com/profile/08634355302177050978noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-76075021089888086422011-04-10T10:09:11.356-04:002011-04-10T10:09:11.356-04:00Hi Jon,
My name is Dan and I was diagnosed with c...Hi Jon,<br /><br />My name is Dan and I was diagnosed with chronic-phase CML on March 26, 2011. I am 42yr old and live in Atlanta with my wife and three kids (9, 7, and 5). I found your blog on Saturday Apr 9th and took time to read through the majority of your story. I am waiting for my first dose of Gleevec to be started next week, so reading through your story has prepared me in a major way for what lies ahead - thank you for making it public! My initial diagnosis unfolded in an almost identical fashion as yours, but rather than bringing home Chinese food for the family, I had just finished running a school-sponsored 5K race with two of my kids in the morning and was wrapping up some early afternoon errands when my wife called my mobile with the info from my doctor and told me to report immediately to the ER - I could not believe it. Anyway, reading your first couple of weeks of postings in 2006 (so far) has been like reading my OWN blog, so I am interested in continuing to follow your incredible and inspiring efforts, as well as your selfless fundraising efforts. You are made of some amazing stuff, Jon. And congratulations on reaching a solid 5 year milestone!Danhttps://www.blogger.com/profile/13394698900619527275noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-42093465437228487702011-03-09T14:40:29.689-05:002011-03-09T14:40:29.689-05:00I am so happy that you have reached the five year ...I am so happy that you have reached the five year mark and are responding to treatment in such a way that your life goes on as life should. A bit richer, and definitely forward.<br />OHSU is such a positive place and I trust that your results will all be great for a great many years ahead<br />love and light to you all<br />AnnieAnnie - Steven's momhttps://www.blogger.com/profile/09686206651106377099noreply@blogger.comtag:blogger.com,1999:blog-25131597.post-24083010642704196232010-12-22T16:34:22.124-05:002010-12-22T16:34:22.124-05:00Jon,
Congratulations for all of the hard work you ...Jon,<br />Congratulations for all of the hard work you are doing and have done for the LLS. As a fellow CMLer your help does make a difference.<br />ChuckChuckhttps://www.blogger.com/profile/03928065174098383679noreply@blogger.com