Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 >From: " Jim " <jjmcf@...> > >About 3 hours ago I sent messages to onelist to be distributed. These >messages still have not come back to me in distribution. > >Only testing and NOT seeking reassurances. > >Jim Jim - yes you are!!! wendy in canada ;o) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 Jim, Please except my apoligies. I was only teasing you! I always get the message I send before the notification that it will be posted on the ocd-L, but otherwise, I think I get my posts fairly quickly. On this list, if I remember correctly, its almost immediatly. I hope this helps with some answers - whether its just your server, or the list. your chocolate buddy, wendy in canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 said: > Jim - yes you are!!! When Jim sent a 'test post' indicating he was not seeking ressurance. Jim now responds: Actually, I beleive my OCD " O's and C's " that deal with perfection often drive me to to continue to push to seek the 'reason why'. Also, somewhat related is my need to tell and/or to explain. At the time of my test posts, I was truly concerned about my computer's operation. Also, I felt that I needed to explain why I was posting a test post. Last week, I regularly received my copies of post to onelist in 5 minutes or less. As I mentioned in the test post, I wondered why I had received a private reply to a message that I had sent, which I had not even received myself [and did not receive until 1 hour after I received that reply]. For the record, I received my copies of my test post back from onelist just about 4 hours after I had sent them. I will still wonder why the transit time of my emails through onelist have increased by nearly 4 hours in the past week, Enquiring minds want to know! And I will probably continue to monitor, in order to see that the system is working. For those of you 'without OCD' please consider the following [and do not respond by answering]. When you send a package through the mail to a loved one, and you do not receive a confirmation that it has been received; do you worry about what might have happened to the package? Do you ever think about it for a while, and perhaps ask others [but not the intended recipient] of they know if it was received? And after a longer while [during which you have continued to think about what may have happened to the package] and you are finally able to see the intended recipient, do you feel to ask the person if the package was received? Since you don't have OCD, I am sure none of you have ever experienced ANY anxiety if you have been a part or the foregoing situation, nor have you felt ANY need to seek ANY reassurance about the package you sent. Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 said: > Jim - yes you are!!! When Jim sent a 'test post' indicating he was not seeking ressurance. Jim now responds: Actually, I beleive my OCD " O's and C's " that deal with perfection often drive me to to continue to push to seek the 'reason why'. Also, somewhat related is my need to tell and/or to explain. At the time of my test posts, I was truly concerned about my computer's operation. Also, I felt that I needed to explain why I was posting a test post. Last week, I regularly received my copies of post to onelist in 5 minutes or less. As I mentioned in the test post, I wondered why I had received a private reply to a message that I had sent, which I had not even received myself [and did not receive until 1 hour after I received that reply]. For the record, I received my copies of my test post back from onelist just about 4 hours after I had sent them. I will still wonder why the transit time of my emails through onelist have increased by nearly 4 hours in the past week, Enquiring minds want to know! And I will probably continue to monitor, in order to see that the system is working. For those of you 'without OCD' please consider the following [and do not respond by answering]. When you send a package through the mail to a loved one, and you do not receive a confirmation that it has been received; do you worry about what might have happened to the package? Do you ever think about it for a while, and perhaps ask others [but not the intended recipient] of they know if it was received? And after a longer while [during which you have continued to think about what may have happened to the package] and you are finally able to see the intended recipient, do you feel to ask the person if the package was received? Since you don't have OCD, I am sure none of you have ever experienced ANY anxiety if you have been a part or the foregoing situation, nor have you felt ANY need to seek ANY reassurance about the package you sent. Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Message received to group! Welcome and hope you find it helpful to be part of what seems at the moment to be a rapidly expanding group. Write back and introduce yourself a bit. As you know its an international group so its also helpful to let us know where you live, etc. Chris (Plymouth UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Hi I'm sure by now you've read all my posts, and see this is not really anyone new, just Janet (nukesters) trying to make the posting thing work. Thankfully, it's working fine for me now, and I can stop bugging everyone about this! crazy how such a small thing can make you so frustrated when it won't work, and now so happy that it does work!! ) Janet. > Message received to group! Welcome and hope you find it helpful to be part of > what seems at the moment to be a rapidly expanding group. > > Write back and introduce yourself a bit. As you know its an international > group so its also helpful to let us know where you live, etc. > > Chris > (Plymouth UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 Hi Rose! Yes it worked! Welcome to Jeanettas Group. Good luck and God bless! Kathy S (Pa) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2006 Report Share Posted October 31, 2006 Still here and enjoying all this great list has to offer. My Thanks To Anya. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2007 Report Share Posted January 27, 2007 Received Sat. 1/27/07. Just trying to see if the group is up and running correctly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 For some reason I haven't been able to post, just testing. Says my messages have to be approved by the group owner.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 Hi Hpl Seattle, All new members are moderated meaning that their messages have to be approved by one of the list moderators. This is done in an attempt to cut down on spam. You'd be surprised if you saw how many people join cancer lists for no other reason than to send spam. Tracey List Owner > > For some reason I haven't been able to post, just testing. > > Says my messages have to be approved by the group owner.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Hi Hans, I will be praying that you find a match in your siblings. I have two myself. Lea from the group is young and had a successful transplant so I know you would too. Stay positive. Your children will get you through this. God's Blessings, Jackie S. From: hpl_seattle <hansl@...> Subject: [ ] Re: Test post Date: Friday, October 2, 2009, 2:58 PM Thanks Tracey ! Just a brief intro, I was diagnosed with CML in Dec 08, 6 months of Gleevec and while I had a great Hematological Response, no cytogenetic (like still 20/20). Then onto Sprycel, and even lower CBC counts (2k WBC, 46k Platelets, and slight anemia). After 3 months on Sprycel, my Cytogenetic 'moved' to 19/20 from 20/20, but basically no improvement otherwise. So, dr. is seriously considering a transplant, getting my sisters tested. No mutations in the June test, running one now to see.. Wondering if anyone else has had or heard of a similar profile, and maybe what helped ? I have 2 very young boys (7 months and almost 3), and now just wouldn'be a good time to go for a transplant. One of my best friends had one in Jan for CML, and he's doing great, but I know it's a tough process. I am (thanks to learning about Beth) going down to OHSU on Tuesday to possible see if I am a good candidate for the Ariad trial (I live in Seattle so not too far). Just finally, thank you everyone for sharing, and truely enjoy seeing the great support and encouragement that you all show to each other. Hans > > > > For some reason I haven't been able to post, just testing. > > > > Says my messages have to be approved by the group owner.... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 > Just a brief intro, I was diagnosed with CML in Dec 08, 6 months of Gleevec and while I had a great Hematological Response, no cytogenetic (like still 20/20). Then onto Sprycel, and even lower CBC counts (2k WBC, 46k Platelets, and slight anemia). After 3 months on Sprycel, my Cytogenetic 'moved' to 19/20 from 20/20, but basically no improvement otherwise. _____________________________ Hi Hans, You absolutely have not been on any drug long enough to be considering a transplant....which is basically last resort now for CML. I am so glad that you are going to OHSU because they have so much experience, regardless of which Dr. you see. I have been a patient of Dr. Druker (OHSU) since 2-2000. I am a slow responder to the drugs with no mutations. I was on 400mg Gleevec for one year (in a trial) and my Ph+ only went from about 96% to 79% (this was FISH, I think I might have still been 20/20 cells or maybe 19/20 cells). Then per the trial protocol (and there were no other drugs then) I went on 800mg Gleevec and over the next 4.5 years, slowly dropped to 50% Ph+ and gradually 35% Ph+.....the best I ever did on Gleevec. Then I went to Sprycel and at 3 years finally became CCR (0/20 cells). I am telling you my history....I was dx 11 years ago!....so that you realize you can still live without getting to CCR, even though that is the goal. The OHSU doctors will know how to deal with you and any problems that arise....like the low blood counts. I know that you will be impressed with the care and expertise that you receive at OHSU. I am glad that you found this list. Keep in touch and let us know how your appointment goes. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 ME TOO, NANCY, FEB, 2000 OHSU, BUT YOU KNOW ALL THAT. BUT, FOR THE FIRST 5 YEARS, BEFORE THE GLEEVEC TRIAL, I NEVER HAD A CYTOGENETIC RESPONSE EITHER. NOT UNTIL SPRYCEL, MARCH OF 2005. SO I HAD CML FOR 10 YEARS BEFORE I ACHIEVED CCR, AND HAVE NEVER REACHED MMR. I'M GETTING CLOSE ON ARIAD, I THINK THE BEST I EVER DID ON GLEEVEC WAS 20%ph. BUT, LIKE YOU, BECAUSE OF IT, WE ARE STILL HERE, AND NO BMT YET, KNOCK ON WOOD, ANYWAY, I'M TOO OLD FOR ONE!!! GOOD LUCK TO ALL, BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of Michigan 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 From: hey00nanc <ncogan@...> Subject: [ ] Re: Test post Date: Saturday, October 3, 2009, 3:30 PM > Just a brief intro, I was diagnosed with CML in Dec 08, 6 months of Gleevec and while I had a great Hematological Response, no cytogenetic (like still 20/20). Then onto Sprycel, and even lower CBC counts (2k WBC, 46k Platelets, and slight anemia). After 3 months on Sprycel, my Cytogenetic 'moved' to 19/20 from 20/20, but basically no improvement otherwise. ____________ _________ ________ Hi Hans, You absolutely have not been on any drug long enough to be considering a transplant.. ..which is basically last resort now for CML. I am so glad that you are going to OHSU because they have so much experience, regardless of which Dr. you see. I have been a patient of Dr. Druker (OHSU) since 2-2000. I am a slow responder to the drugs with no mutations. I was on 400mg Gleevec for one year (in a trial) and my Ph+ only went from about 96% to 79% (this was FISH, I think I might have still been 20/20 cells or maybe 19/20 cells). Then per the trial protocol (and there were no other drugs then) I went on 800mg Gleevec and over the next 4.5 years, slowly dropped to 50% Ph+ and gradually 35% Ph+.....the best I ever did on Gleevec. Then I went to Sprycel and at 3 years finally became CCR (0/20 cells). I am telling you my history....I was dx 11 years ago!....so that you realize you can still live without getting to CCR, even though that is the goal. The OHSU doctors will know how to deal with you and any problems that arise....like the low blood counts. I know that you will be impressed with the care and expertise that you receive at OHSU. I am glad that you found this list. Keep in touch and let us know how your appointment goes. C. Quote Link to comment Share on other sites More sharing options...
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