Guest guest Posted July 11, 2008 Report Share Posted July 11, 2008 Hi , Just wanted to say welcome and hello . My name is Lani, and my daughter has poly JRA since as long as we can remember. She just turned two this past week. This is a great place to vent and get advice on all sorts of stuff. Best wishes, Lani and > > Howdy to all. My name is and my beauutiful daughter who will be > 3 on Monday has had JRA since she was 8 months old. I am wanting to > join a group that is active and where I can vent. I am sure that this > group will be helpful to me. I'll explain more later but just thought > I'd jump right on in and give a short introduction. > > Stac > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 Welcome Stac..this is a wonderful group. Some of the most educated, compassionate and great folks are here and willing and able to help, listen, or laugh with. We always hate knowing of another child who must endure what this monster can bring yet we are so glad this group exists for you. I am a 38 yr vet to JA. I was 4 at diagnosis in 1970. Most are parents like yourself but there are a several very inspiring young folks on board as well as a few of us old timers. Please feel free to jump in to chat, laugh or cry anytime... welcome! Donna<BR><BR><BR>**************<BR>Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com!<BR> (http://www.tourtracker.com?NCID=aolmus00050000000112)</HTML> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2010 Report Share Posted August 5, 2010 I hope everybody on the list is doing well. Just a quick hello from San , CA. I haven t posted for a while as life is pretty busy right now with my girlfriend going to UCLA in the fall. I got another negative PCR yesterday so everything is as good as possible on that front. My dr mentioned a few months ago the possibility (if and when I want) to switch to one of the 2nd generation drugs but I declined, I don t see why to fix something that s working so well (I am on 400mg of gleevec since March 2005). I wish everybody a good upcoming week-end, Cheers, Marcos -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 721 9305 408 219 9622 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2010 Report Share Posted August 5, 2010 Hi Zavie, My dr was just talking about options, she s pretty nice actually. I was asking if Kaiser will do a trial like STIM (Stop Imatinib) if I stay PCRU another year, and the discussion drifted towards new medications. I am very happy with gleevec, I can dive, climb, practice taekwondo, and I am not thinking to switch unless there is serious evidence that a new drug will lead to a cure. Marcos. On Thu, Aug 5, 2010 at 2:02 PM, Zavie <zmiller@...> wrote: > > > Hi Marcos, > > So glad to hear that you continue to do well on Gleevec. > > I just don't understand his attitude. He is the doctor and should be making > the medical decisions. If he thinks that you should go to another > medication > then he should make the suggestion and explain why the switch is necessary. > > I don't know of any CML specialist that will suggest switching medication > when the current medication is doing so well. Changing medication can > result > in side effects that could change your QOL. > > Zavie > > Zavie (age 72) > > 67 Shoreham Avenue > > Ottawa, Canada, K2G 3X3 > > dxd AUG/99 > > INF OCT/99 to FEB/00, CHF > > No meds FEB/00 to JAN/01 > > Gleevec since MAR/27/01 (400 mg) > > CCR SEP/01. #102 in Zero Club > > 2.8 log reduction Sep/05 > > 3.0 log reduction Jan/06 > > 2.9 log reduction Feb/07 > > 3.6 log reduction Apr/08 > > 3.6 log reduction Sep/08 > > 3.7 log reduction Jan/09 > > 3.8 log reduction May/09 > > 3.8 log reduction Aug/09 > > 4.0 log reduction Dec/09 > > 4.4 log reduction Apr/10 > > e-mail: <mailto:zmiller@... <zmiller%40sympatico.ca>> > zmiller@... <zmiller%40sympatico.ca> > > Tel: 613-726-1117 > > Fax: 613-482-4801 > > Cell: 613-282-0204 > > ID: zaviem > > From: <%40> [mailto: > <%40>] On Behalf Of Marcos > Perreau Guimaraes > Sent: August-05-10 1:37 PM > > Subject: [ ] howdy > > > I hope everybody on the list is doing well. Just a quick hello from > San , CA. I haven t posted for a while as life is pretty busy > right now with my girlfriend going to UCLA in the fall. I got another > negative PCR yesterday so everything is as good as possible on that > front. My dr mentioned a few months ago the possibility (if and when I > want) to switch to one of the 2nd generation drugs but I declined, I > don t see why to fix something that s working so well (I am on 400mg > of gleevec since March 2005). I wish everybody a good upcoming > week-end, > Cheers, > Marcos > > -- > Marcos Perreau Guimaraes > Suppes Brain Lab > Ventura Hall - CSLI > Stanford University > 220 Panama street > Stanford CA 94305-4101 > 650 721 9305 > 408 219 9622 (cell) > marcospg@... <marcospg%40stanford.edu> <mailto: > marcospg%40stanford.edu <marcospg%2540stanford.edu>> > montereyunderwater@... <montereyunderwater%40gmail.com> <mailto: > montereyunderwater%40gmail.com <montereyunderwater%2540gmail.com>> > www.stanford.edu/~marcospg/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2010 Report Share Posted August 6, 2010 Hi Marcos: We are on the same page. Just got into a discussion with other CML people, and that was my exact words  IF IT AIN'T BROKEN DON'T FIX IT. May you continue to be blessed with good results, and enjoy your life. A. --- On Thu, 8/5/10, Marcos Perreau Guimaraes <montereyunderwater@...> wrote: From: Marcos Perreau Guimaraes <montereyunderwater@...> Subject: [ ] howdy " " < > Date: Thursday, August 5, 2010, 1:37 PM  I hope everybody on the list is doing well. Just a quick hello from San , CA. I haven t posted for a while as life is pretty busy right now with my girlfriend going to UCLA in the fall. I got another negative PCR yesterday so everything is as good as possible on that front. My dr mentioned a few months ago the possibility (if and when I want) to switch to one of the 2nd generation drugs but I declined, I don t see why to fix something that s working so well (I am on 400mg of gleevec since March 2005). I wish everybody a good upcoming week-end, Cheers, Marcos -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 721 9305 408 219 9622 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
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