Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 I just spoke to Elaine,and she said I could participate in the survey. I just have to wait for a e-mail with instructions etc. I will keep everyone posted on how this turns out. That is a shame that people cannot participate if they had a previous cancer. We are talking about CML, and how we have done with our treatments with TKI's etc. I hope this turns out to be beneficial in some way. From: marcon <marcon@...> Subject: [ ] survey information , cmlhope@... Date: Tuesday, February 15, 2011, 10:53 AM  To All I just called Elaine at 800-683-1287 ext. 127. She took my name and phone # for future reference. Turns out the organization/company requesting the survey will accept only people who have not had an another cancer. Elaine said about 75% of the people who have called so far have all had a previous cancer. I'm out of it because I had an oral cancer in 1987--squamous cell on my gum. Fixed with laser surgery, no follow-up treatment necessary, no recurrence. We've talked about how many of us have had a cancer in addition or prior to cml. It's all fascinating, esp. since I have lived to tell the tale... Best regards, Ruth Marcon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 I just called Elaine and got accepted. I am anxious to see what the survey asks. I will keep you informed. Sharon _____ From: [mailto: ] On Behalf Of Armour Sent: Tuesday, February 15, 2011 10:19 AM Subject: Re: [ ] survey information I just spoke to Elaine,and she said I could participate in the survey. I just have to wait for a e-mail with instructions etc. I will keep everyone posted on how this turns out. That is a shame that people cannot participate if they had a previous cancer. We are talking about CML, and how we have done with our treatments with TKI's etc. I hope this turns out to be beneficial in some way. --- On Tue, 2/15/11, marcon <marcon@... <mailto:marcon%40enter.net> > wrote: From: marcon <marcon@... <mailto:marcon%40enter.net> > Subject: [ ] survey information <mailto:%40> , cmlhope@... <mailto:cmlhope%40google.com> Date: Tuesday, February 15, 2011, 10:53 AM To All I just called Elaine at 800-683-1287 ext. 127. She took my name and phone # for future reference. Turns out the organization/company requesting the survey will accept only people who have not had an another cancer. Elaine said about 75% of the people who have called so far have all had a previous cancer. I'm out of it because I had an oral cancer in 1987--squamous cell on my gum. Fixed with laser surgery, no follow-up treatment necessary, no recurrence. We've talked about how many of us have had a cancer in addition or prior to cml. It's all fascinating, esp. since I have lived to tell the tale... Best regards, Ruth Marcon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 I took it yesterday. It had a lot to do with the side effects of treatment. On Tue, Feb 15, 2011 at 10:45 AM, Sharon Teichera <onthewtr@...>wrote: > > > I just called Elaine and got accepted. I am anxious to see what the survey > asks. I will keep you informed. > Sharon > > _____ > > From: [mailto: ] On Behalf Of > > Armour > Sent: Tuesday, February 15, 2011 10:19 AM > > Subject: Re: [ ] survey information > > > I just spoke to Elaine,and she said I could participate in the survey. I > just have to wait for a e-mail with instructions etc. I will keep everyone > posted on how this turns out. That is a shame that people cannot > participate if they had a previous cancer. We are talking about CML, and > how we have done with our treatments with TKI's etc. I hope this turns out > to be beneficial in some way. > > > > > From: marcon <marcon@... <mailto:marcon%40enter.net> > > > Subject: [ ] survey information > <mailto:%40> , > cmlhope@... <mailto:cmlhope%40google.com> > Date: Tuesday, February 15, 2011, 10:53 AM > > To All > > I just called Elaine at 800-683-1287 ext. 127. She took my > name and phone # for future reference. Turns out the > organization/company requesting the survey will accept only > people who have not had an another cancer. Elaine said about > 75% of the people who have called so far have all had a > previous cancer. I'm out of it because I had an oral cancer > in 1987--squamous cell on my gum. Fixed with laser surgery, > no follow-up treatment necessary, no recurrence. We've > talked about how many of us have had a cancer in addition or > prior to cml. It's all fascinating, esp. since I have lived > to tell the tale... > > Best regards, > > Ruth Marcon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Thanks for the info. Did they just want side rffects on present meds or past too? Sent via BlackBerry by AT & T [ ] survey information > <mailto:%40> , > cmlhope@... <mailto:cmlhope%40google.com> > Date: Tuesday, February 15, 2011, 10:53 AM > > To All > > I just called Elaine at 800-683-1287 ext. 127. She took my > name and phone # for future reference. Turns out the > organization/company requesting the survey will accept only > people who have not had an another cancer. Elaine said about > 75% of the people who have called so far have all had a > previous cancer. I'm out of it because I had an oral cancer > in 1987--squamous cell on my gum. Fixed with laser surgery, > no follow-up treatment necessary, no recurrence. We've > talked about how many of us have had a cancer in addition or > prior to cml. It's all fascinating, esp. since I have lived > to tell the tale... > > Best regards, > > Ruth Marcon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 I had a tiny spot on my hand taken off and it was a form of squamous cell but no big deal the surgeon said. Just sun damage and nothing else done, would that stop me from the survey?                          Dee ________________________________ From: " onthewtr@... " <onthewtr@...> Sent: Tue, February 15, 2011 2:09:13 PM Subject: Re: [ ] survey information  Thanks for the info. Did they just want side rffects on present meds or past too? Sent via BlackBerry by AT & T [ ] survey information > <mailto:%40> , > cmlhope@... <mailto:cmlhope%40google.com> > Date: Tuesday, February 15, 2011, 10:53 AM > > To All > > I just called Elaine at 800-683-1287 ext. 127. She took my > name and phone # for future reference. Turns out the > organization/company requesting the survey will accept only > people who have not had an another cancer. Elaine said about > 75% of the people who have called so far have all had a > previous cancer. I'm out of it because I had an oral cancer > in 1987--squamous cell on my gum. Fixed with laser surgery, > no follow-up treatment necessary, no recurrence. We've > talked about how many of us have had a cancer in addition or > prior to cml. It's all fascinating, esp. since I have lived > to tell the tale... > > Best regards, > > Ruth Marcon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Call elaine she will tell u. I seriously doubt that wld matter Sharon Sent via BlackBerry by AT & T [ ] survey information > <mailto:%40> , > cmlhope@... <mailto:cmlhope%40google.com> > Date: Tuesday, February 15, 2011, 10:53 AM > > To All > > I just called Elaine at 800-683-1287 ext. 127. She took my > name and phone # for future reference. Turns out the > organization/company requesting the survey will accept only > people who have not had an another cancer. Elaine said about > 75% of the people who have called so far have all had a > previous cancer. I'm out of it because I had an oral cancer > in 1987--squamous cell on my gum. Fixed with laser surgery, > no follow-up treatment necessary, no recurrence. We've > talked about how many of us have had a cancer in addition or > prior to cml. It's all fascinating, esp. since I have lived > to tell the tale... > > Best regards, > > Ruth Marcon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Hi All. I called Elaine to see if Robyn qualifies for the survey. She said that she is only looking for chronic myloid leukemia not chronic mylogenous leukemia. Did she misunderstand me? Aren't the names interchangeable? I am curious about the squamous cell on the gum. Robyn had xrays taken and the dentist sent her to an oral surgeon who wanted to take a bone scan of the gum in addition to the panasonic x-ray that he took. She went to my periodontist next. He said that he wants her to come back in 6 months, and he will take a 3D picture of it. What was seen on the original xray was something that looked like a growth. ruth, could this be what you had? Sandi > > To All > > I just called Elaine at 800-683-1287 ext. 127. She took my > name and phone # for future reference. Turns out the > organization/company requesting the survey will accept only > people who have not had an another cancer. Elaine said about > 75% of the people who have called so far have all had a > previous cancer. I'm out of it because I had an oral cancer > in 1987--squamous cell on my gum. Fixed with laser surgery, > no follow-up treatment necessary, no recurrence. We've > talked about how many of us have had a cancer in addition or > prior to cml. It's all fascinating, esp. since I have lived > to tell the tale... > > Best regards, > > Ruth Marcon > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 I am a little confused. I did get the e-mail regarding my participation, then when I click on the website for the survey it tells me I did it already. It does say that they will send me a consent form I need to sign and return. I am thinking I cannot do the survey till they get my signature on there. Did anyone else have to mail back a consent form first. > > > > From: marcon <marcon@... <mailto:marcon%40enter.net> > > > > > Subject: [ ] survey information > > <mailto:%40> , > > cmlhope@... <mailto:cmlhope%40google.com> > > Date: Tuesday, February 15, 2011, 10:53 AM > > > > To All > > > > I just called Elaine at 800-683-1287 ext. 127. She took my > > name and phone # for future reference. Turns out the > > organization/company requesting the survey will accept only > > people who have not had an another cancer. Elaine said about > > 75% of the people who have called so far have all had a > > previous cancer. I'm out of it because I had an oral cancer > > in 1987--squamous cell on my gum. Fixed with laser surgery, > > no follow-up treatment necessary, no recurrence. We've > > talked about how many of us have had a cancer in addition or > > prior to cml. It's all fascinating, esp. since I have lived > > to tell the tale... > > > > Best regards, > > > > Ruth Marcon > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Seems like they are being very particular about who they let participate. You wonder about some of these things. > > > > To All > > > > I just called Elaine at 800-683-1287 ext. 127. She took my > > name and phone # for future reference. Turns out the > > organization/company requesting the survey will accept only > > people who have not had an another cancer. Elaine said about > > 75% of the people who have called so far have all had a > > previous cancer. I'm out of it because I had an oral cancer > > in 1987--squamous cell on my gum. Fixed with laser surgery, > > no follow-up treatment necessary, no recurrence. We've > > talked about how many of us have had a cancer in addition or > > prior to cml. It's all fascinating, esp. since I have lived > > to tell the tale... > > > > Best regards, > > > > Ruth Marcon > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 me too!!! Sharon _____ From: [mailto: ] On Behalf Of A Sent: Wednesday, February 16, 2011 3:06 PM Subject: Re: [ ] survey information I am a little confused. I did get the e-mail regarding my participation, then when I click on the website for the survey it tells me I did it already. It does say that they will send me a consent form I need to sign and return. I am thinking I cannot do the survey till they get my signature on there. Did anyone else have to mail back a consent form first. > > > > From: marcon <marcon@... <mailto:marcon%40enter.net> > > > > > Subject: [ ] survey information > > <mailto:%40> <mailto:%40> , > > cmlhope@... <mailto:cmlhope%40google.com> > > Date: Tuesday, February 15, 2011, 10:53 AM > > > > To All > > > > I just called Elaine at 800-683-1287 ext. 127. She took my > > name and phone # for future reference. Turns out the > > organization/company requesting the survey will accept only > > people who have not had an another cancer. Elaine said about > > 75% of the people who have called so far have all had a > > previous cancer. I'm out of it because I had an oral cancer > > in 1987--squamous cell on my gum. Fixed with laser surgery, > > no follow-up treatment necessary, no recurrence. We've > > talked about how many of us have had a cancer in addition or > > prior to cml. It's all fascinating, esp. since I have lived > > to tell the tale... > > > > Best regards, > > > > Ruth Marcon > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I just took the survey. I found it a little hard to answer some of the questions, because some of my problems are not related to the CML. You cannot skip anything, and you have to stop and think. Curious if anyone else runs into this problem. > > > > > > From: marcon <marcon@ <mailto:marcon%40enter.net> > > > > > > > Subject: [ ] survey information > > > <mailto:%40> > <mailto:%40> , > > > cmlhope@ <mailto:cmlhope%40google.com> > > > Date: Tuesday, February 15, 2011, 10:53 AM > > > > > > To All > > > > > > I just called Elaine at 800-683-1287 ext. 127. She took my > > > name and phone # for future reference. Turns out the > > > organization/company requesting the survey will accept only > > > people who have not had an another cancer. Elaine said about > > > 75% of the people who have called so far have all had a > > > previous cancer. I'm out of it because I had an oral cancer > > > in 1987--squamous cell on my gum. Fixed with laser surgery, > > > no follow-up treatment necessary, no recurrence. We've > > > talked about how many of us have had a cancer in addition or > > > prior to cml. It's all fascinating, esp. since I have lived > > > to tell the tale... > > > > > > Best regards, > > > > > > Ruth Marcon > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I agree . I found it confusing and wanting to write in explanations for some of my answers. I tried to go back to one page and was not allowed to. I just did the best I could. Sharon _____ From: [mailto: ] On Behalf Of A Sent: Wednesday, February 16, 2011 4:44 PM Subject: Re: [ ] survey information I just took the survey. I found it a little hard to answer some of the questions, because some of my problems are not related to the CML. You cannot skip anything, and you have to stop and think. Curious if anyone else runs into this problem. > > > > > > From: marcon <marcon@ <mailto:marcon%40enter.net> > > > > > > > Subject: [ ] survey information > > > <mailto:%40> <mailto:%40> > <mailto:%40> , > > > cmlhope@ <mailto:cmlhope%40google.com> > > > Date: Tuesday, February 15, 2011, 10:53 AM > > > > > > To All > > > > > > I just called Elaine at 800-683-1287 ext. 127. She took my > > > name and phone # for future reference. Turns out the > > > organization/company requesting the survey will accept only > > > people who have not had an another cancer. Elaine said about > > > 75% of the people who have called so far have all had a > > > previous cancer. I'm out of it because I had an oral cancer > > > in 1987--squamous cell on my gum. Fixed with laser surgery, > > > no follow-up treatment necessary, no recurrence. We've > > > talked about how many of us have had a cancer in addition or > > > prior to cml. It's all fascinating, esp. since I have lived > > > to tell the tale... > > > > > > Best regards, > > > > > > Ruth Marcon > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I tryed to go back also, but then it threw me off completely. I had to get back on. Glad it was not only me that had trouble. I guess we will see what happens. From: Sharon Teichera <onthewtr@...> Subject: RE: [ ] survey information Date: Wednesday, February 16, 2011, 8:41 PM  I agree . I found it confusing and wanting to write in explanations for some of my answers. I tried to go back to one page and was not allowed to. I just did the best I could. Sharon _____ From: [mailto: ] On Behalf Of A Sent: Wednesday, February 16, 2011 4:44 PM Subject: Re: [ ] survey information I just took the survey. I found it a little hard to answer some of the questions, because some of my problems are not related to the CML. You cannot skip anything, and you have to stop and think. Curious if anyone else runs into this problem. > > > > > > From: marcon <marcon@ <mailto:marcon%40enter.net> > > > > > > > Subject: [ ] survey information > > > <mailto:%40> <mailto:%40> > <mailto:%40> , > > > cmlhope@ <mailto:cmlhope%40google.com> > > > Date: Tuesday, February 15, 2011, 10:53 AM > > > > > > To All > > > > > > I just called Elaine at 800-683-1287 ext. 127. She took my > > > name and phone # for future reference. Turns out the > > > organization/company requesting the survey will accept only > > > people who have not had an another cancer. Elaine said about > > > 75% of the people who have called so far have all had a > > > previous cancer. I'm out of it because I had an oral cancer > > > in 1987--squamous cell on my gum. Fixed with laser surgery, > > > no follow-up treatment necessary, no recurrence. We've > > > talked about how many of us have had a cancer in addition or > > > prior to cml. It's all fascinating, esp. since I have lived > > > to tell the tale... > > > > > > Best regards, > > > > > > Ruth Marcon > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I don't think they made it real clear. That was my only beef. A lot of the questions had to do with how you'd been feeling either in the past month or the past 24 hours. I sent an email saying it was too bad they didn't have one of those spaces for " anything you'd like to say that wasn't asked in the survey? " I got a very nice email back saying they would send me a form to fill out, then they would ask that question. On Tue, Feb 15, 2011 at 11:09 AM, <onthewtr@...> wrote: > > > Thanks for the info. Did they just want side rffects on present meds or > past too? > Sent via BlackBerry by AT & T > > [ ] survey information > > <mailto:%40> , > > cmlhope@... <mailto:cmlhope%40google.com> > > Date: Tuesday, February 15, 2011, 10:53 AM > > > > To All > > > > I just called Elaine at 800-683-1287 ext. 127. She took my > > name and phone # for future reference. Turns out the > > organization/company requesting the survey will accept only > > people who have not had an another cancer. Elaine said about > > 75% of the people who have called so far have all had a > > previous cancer. I'm out of it because I had an oral cancer > > in 1987--squamous cell on my gum. Fixed with laser surgery, > > no follow-up treatment necessary, no recurrence. We've > > talked about how many of us have had a cancer in addition or > > prior to cml. It's all fascinating, esp. since I have lived > > to tell the tale... > > > > Best regards, > > > > Ruth Marcon > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I agree that it was not clear. They had cut and dry questions, and made it hard to answer due to other health issues that cause side effects. It took me more than 20 minutes to think things out. I think many people probably had this problem doing the survey. A. > > > > From: marcon <marcon@... <mailto:marcon%40enter.net> > > > > > Subject: [ ] survey information > > <mailto:%40> , > > cmlhope@... <mailto:cmlhope%40google.com> > > Date: Tuesday, February 15, 2011, 10:53 AM > > > > To All > > > > I just called Elaine at 800-683-1287 ext. 127. She took my > > name and phone # for future reference. Turns out the > > organization/company requesting the survey will accept only > > people who have not had an another cancer. Elaine said about > > 75% of the people who have called so far have all had a > > previous cancer. I'm out of it because I had an oral cancer > > in 1987--squamous cell on my gum. Fixed with laser surgery, > > no follow-up treatment necessary, no recurrence. We've > > talked about how many of us have had a cancer in addition or > > prior to cml. It's all fascinating, esp. since I have lived > > to tell the tale... > > > > Best regards, > > > > Ruth Marcon > > > > Quote Link to comment Share on other sites More sharing options...
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