WOW, what a milestone. That gives us other folks some hope. Greenie Good luck to you. In a message dated 7/2/2010 1:37:56 P.M. Central Daylight Time, skipd_2...@yahoo.com writes:
Hello to the group, Jeanie I agree with you, if we have a difference of opinion then, we should take it off the group and try to make nice. I neither agree or disagree when I do see a tiff coming on I have had CML most likely the longest in the world, and the way things are going think this may be the end of it. One of you will become the longest etc etc. I look at Lottie and see a bright spirit and wish we all could be like her. Folks I have seen many very nice people who did not make it, and wish I could talk with them again, they were wonderful people trying to work through their Cancer. This past two years I have failed all those new drugs (you call them new) and now I am on nothing. I look forward to reading email on the site, every day. You have wonderful people on these groups treat them kindly, you just never know. thank you group for just being there Skip Duffie dx'ed 33 ++ years ago. ____________________________________ From: "icandoall...@aol.com" <icandoall...@aol.com> To: cmlhope@googlegroups.com Sent: Fri, July 2, 2010 12:39:53 PM Subject: Re: [CMLHope] Re: I wrote to Sheila offline to spare her embarrassment This group is a wonderful griyo and I have been on it since the beginning way back when it was a yahoo list. Sometimes arguments like this happen, but it doesn't in anyway diminish what this group accomplishes. It has helped me in more ways than I could say. For you to say this list is a "joke" then you just don't know much about this group and the people that on it daily. I just sent the information on Dr Talpaz and from the article it certainly looks like he was on the team that developed Gleevec. Let's all come together and fight this CML like the Warriors we are. Blessings Jeanie<3 In a message dated 7/2/2010 7:15:14 A.M. Pacific Daylight Time, dsh...@midwaynet.net writes: You really crack me up that you posted this for everyone to see. Like I told you this does not embarass me, and no I wasn't having a bad day I was actually having an awesome day. I don't know how you don't think that the first e-mail you sent me was agressive??? All I was doing why trying to give Greenie some inside on Dr. Talpaz and then you come along and tell me that I don't kow what I'm talking about when I was told by Zavie a few years back (and I'm really sure I could find the e-mail) that Talpaz was on the gleevec team, plus Talpaz told me himself...and I wasn't personally calling Zavie a liar (sorry if that's the way you took it Zavie and Marty) I was asking you Susan if you thought he was a liar, sorry if you can't understand my sarcasm. I used to find his group helpful and now all it is is people constantly nit picking everything, what a joke anymore! Also you didn't post my last e-mail to you yesterday so I will paste it here, don't want to leave anything out do we? Since I'm such a mean agressive person :) To: educatorsu...@aol.com Subject: Re: about your comment on Dr. Talpaz Is this a threat...WOW grow up and if you feel the need to post this so go right ahead I really don't care and if you think this would be embarrass me you are so wrong. What a joke you are and I thought this site was something good well with people like you "lurking" I guess I was wrong. Like I said grow up and if you feel like "tattling" on me to the group because apparently you know it go right ahead :) On Jul 1, 1:06 pm, educatorsusan <educatorsu...@aol.com> wrote: > Dear Everyone: > > I need a little help here. I responded to Sheila privately to spare > her anything embarrassing. However, she was VERY aggressive and I > HAVE NEVER been treated like this before. I conferred with Zavie as > well and he semi-agreed with me...let me know what you think and how I > could do better the next time. Like I said, I have NEVER been told > anything negative and my last email to Sheila was that I was going to > have to bring this to the group. > > This is pasted from the emails sent (my original comments should be > read from the bottom up so you are current with the whole > conversation: > > Sheila: > > You are going to force me to send this whole correspondence to the > CMLHOPE group. This is not even funny. I am sorry that you feel this > way about me. > > Hugs, > Susan > > In a message dated 7/1/2010 11:32:54 A.M. Eastern Daylight Time,dsh...@midwaynet.net writes: > > Not really being polite in my book. Zavie Miller told me he was on > the team that invented gleevec so I guess now he's lieing...whatever > really don't care. Like I said I'll never reply again to a post. You > came off as being a no it all bitch...sorry > > > > -------Original Message------- > > From: educatorsu...@aol.com > Date: 7/1/2010 10:25:58 AM > To: dsh...@midwaynet.net > Subject: Re: about your comment on Dr. Talpaz > > Sheila: > > I was being polite. I was not "ass chewing". I am a "lurker" on the > group and keep up daily with the digests. I know that you are proud > that he is your doctor. I just wanted you to be informed. "Ass > Chewing" would have been replying via the digest...I thought I was > being considerate... > > Hugs, > Susan > > In a message dated 6/30/2010 1:14:52 P.M. Eastern Daylight Time, > dsh...@midwaynet.net writes: > OK???? I didn't mean to get an ass chewing...I was told by someone > else in the group a few years back that he was involved SORRY, guess I > won't be posting anything again, just trying to help a fellow CMLer > along > > -------Original Message------- > > From: educatorsu...@aol.com > Date: 6/30/2010 11:00:12 AM > To: dsh...@midwaynet.net > Subject: about your comment on Dr. Talpaz > > Sheila: > > Dr. Talpaz did not NOR did he have any input on the development of > Gleevec. His main focus was the old drug Interferon, of which he is > still experimenting with this drug to help Gleevec along. > > The only way Dr. Moshe Talpaz became involved was when at MD Anderson, > he chose to become involved since he realized his pet, Interferon, was > going nowhere fast!!! This is the scoop! > > I did not want to embarrass you in front of the group so I am choosing > to just email you privately. > > I just thought I would give you a little bit of history. This does > not make Dr. Talpaz in my opinion any less of a doctor...BUT he had NO > INVOLVEMENT in the trials with Gleevec. > > Hugs, > Susan Rosenthal > > AGAIN, please advise me as to how to handle this in the future...just > reply to the group instead of individually? I am just assuming that > Sheila had a very bad day! > > Hugs, > Susan Rosenthal > > Miami, Florida > dx. January 8th, 2003 > Began Gleevec: 4/10/2003 > Ceased Gleevec: 4/21/2003 > "Rebegan" Gleevec: 4/25/2003 > Tranfusion dependent: May 2004-November 2005 > Gleevec reduced to 400mg: 8/2004 > Gleevec reduced to 300mg: 8/2005 > Gleevec reduced to 200/300 alternating days: November 7, 2006 to > present day except now I am taking 250 every day now... > Still undetectable 9/24/2008 > BMB/BMA PCRU!!! FISH 0% YEAH!!!!! > Next appointment with Dr. Druker: Thursday,April 09, 2009 > Gleevec PK Level taken every 3 months monitored by Novartis and Dr. > Druker. PCR taken every 3 months! > PCR-in June was a weak positive but Dr. Druker felt that it was the > same as undetectable...repeated PCR in August 2008-undetectable!!! > (BMB/BMA PCRU!!! FISH 0% YEAH!!!!!) > I was told that I would not need another BMB as long as my numbers > stay where they are!!! YIPEEEE! > 3/2009 PCRU!!!! Yippee!!! Nested test not being done any longer at > OHSU. > 6/2009 PCRU!!!! Yippee!!! Counts on Gleevec PK went up a little > bit...not too happy about that! > This past October, my PCR was undetectable again!!! My Gleevec PK was > a little raised in numbers but still okay...but I am getting some side > effects AGAIN! > This past March, 2010, I was "low traceable" which Dr. Druker says is > the same as undetectable! > June 2010-UNDETECTABLE!!! YEAH!!!!- Hide quoted text - > > - Show quoted text - -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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