Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 I really think that the patient advocacy coordinator at my oncologist office sent this to me. I think that the Novartis rep probably said mail this to who you think would be good for this kind of thing. I was their first Tasigna patient in January of 2007. She has saved me all the BLOOD magazines that contain the blood cancer information. She also knows I am connected with many online support groups. The folder says it is a Patient Advisory Board for patients on a second line treatment for a Philidelphia Chromosome Positive CML. The meeting is supposed to do the following: 1. Exchange experiences on living and managing PH+ CML 2. Discuss the past and current treatments 3. Share insights on practical management approaches 4. Identify unmet educational needs of PH+ CML patients 5. Advise Novartus on the development of meaningful patient education and support programs. That is a handful eh? I must be approved with the consent form and then they will contact me. I mailed it in today. Meanwhile, I am collecting all sorts of questions for them. Some are: 1. What is being developed in case tasigna fails? 2. What can you do about contacting the state insurance comissions informing them of drug and testing protocol so they don't deny testing procedures? 3. Where do we find out what QT prolongation is and how can they explain it to us in laymen's terms? 4. I would love easy-to-understand data on the trials prior to our going on it. The Blood Magazine is incredibly difficult for those without chemestry to understand. 5. I think the way they work or don't work with insurances would be important. I have copied and kept every post from you all so I can effectively remember and represent as many as possible on this endeavor. Thanks for all your feedback. My blessings and all good things. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 Barb, Thank you for your great questions.I look forward to the answers. You have a great team....I'm not sure my doc even reads Blood. But I give him copies of articles that are posted her-lol. > From: Barb Stanley <barbarastanley@...> > Subject: [ ] Sharon, Skip, and Matt > > Date: Sunday, March 8, 2009, 7:32 PM > I really think that the patient advocacy coordinator at my > oncologist office sent this to me. I think that the Novartis > rep probably said mail this to who you think would be good > for this kind of thing. I was their first Tasigna patient in > January of 2007. She has saved me all the BLOOD magazines > that contain the blood cancer information. She also knows I > am connected with many online support groups. > > The folder says it is a Patient Advisory Board for patients > on a second line treatment for a Philidelphia Chromosome > Positive CML. The meeting is supposed to do the following: > 1. Exchange experiences on living and managing PH+ CML > 2. Discuss the past and current treatments > 3. Share insights on practical management approaches > 4. Identify unmet educational needs of PH+ CML patients > 5. Advise Novartus on the development of meaningful > patient education and support programs. > > That is a handful eh? > I must be approved with the consent form and then they will > contact me. I mailed it in today. > Meanwhile, I am collecting all sorts of questions for them. > > Some are: > 1. What is being developed in case tasigna fails? > 2. What can you do about contacting the state insurance > comissions informing them of drug and testing protocol so > they don't deny testing procedures? > 3. Where do we find out what QT prolongation is and how > can they explain it to us in laymen's terms? > 4. I would love easy-to-understand data on the trials > prior to our going on it. The Blood Magazine is incredibly > difficult for those without chemestry to understand. > 5. I think the way they work or don't work with > insurances would be important. > I have copied and kept every post from you all so I can > effectively remember and represent as many as possible on > this endeavor. > Thanks for all your feedback. > My blessings and all good things. > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Thanks China, for the response. I have collected about 20 some questions, from on line and from the LLS reps here in Phoenix. I really hope to have a long report to place in the files when I get done so all can benefit. I really feel like it is all of you that will go with me - IF I am approved. Barb In , china neal <chimera46@...> wrote: > > > Barb, > > Thank you for your great questions.I look forward to the answers. You have a great team....I'm not sure my doc even reads Blood. But I give him copies of articles that are posted her-lol. > > > > > > From: Barb Stanley <barbarastanley@...> > > Subject: [ ] Sharon, Skip, and Matt > > > > Date: Sunday, March 8, 2009, 7:32 PM > > I really think that the patient advocacy coordinator at my > > oncologist office sent this to me. I think that the Novartis > > rep probably said mail this to who you think would be good > > for this kind of thing. I was their first Tasigna patient in > > January of 2007. She has saved me all the BLOOD magazines > > that contain the blood cancer information. She also knows I > > am connected with many online support groups. > > > > The folder says it is a Patient Advisory Board for patients > > on a second line treatment for a Philidelphia Chromosome > > Positive CML. The meeting is supposed to do the following: > > 1. Exchange experiences on living and managing PH+ CML > > 2. Discuss the past and current treatments > > 3. Share insights on practical management approaches > > 4. Identify unmet educational needs of PH+ CML patients > > 5. Advise Novartus on the development of meaningful > > patient education and support programs. > > > > That is a handful eh? > > I must be approved with the consent form and then they will > > contact me. I mailed it in today. > > Meanwhile, I am collecting all sorts of questions for them. > > > > Some are: > > 1. What is being developed in case tasigna fails? > > 2. What can you do about contacting the state insurance > > comissions informing them of drug and testing protocol so > > they don't deny testing procedures? > > 3. Where do we find out what QT prolongation is and how > > can they explain it to us in laymen's terms? > > 4. I would love easy-to-understand data on the trials > > prior to our going on it. The Blood Magazine is incredibly > > difficult for those without chemestry to understand. > > 5. I think the way they work or don't work with > > insurances would be important. > > I have copied and kept every post from you all so I can > > effectively remember and represent as many as possible on > > this endeavor. > > Thanks for all your feedback. > > My blessings and all good things. > > Barb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi Barb - I am catching up with all the emails since I have been on a short break. That is fabulous news re your invite - I certainly hope you can fly the flag for us! Regards, from Down Under From: [mailto: ] On Behalf Of Barb Stanley Sent: Monday, 9 March 2009 1:32 PM Subject: [ ] Sharon, Skip, and Matt I really think that the patient advocacy coordinator at my oncologist office sent this to me. I think that the Novartis rep probably said mail this to who you think would be good for this kind of thing. I was their first Tasigna patient in January of 2007. She has saved me all the BLOOD magazines that contain the blood cancer information. She also knows I am connected with many online support groups. The folder says it is a Patient Advisory Board for patients on a second line treatment for a Philidelphia Chromosome Positive CML. The meeting is supposed to do the following: 1. Exchange experiences on living and managing PH+ CML 2. Discuss the past and current treatments 3. Share insights on practical management approaches 4. Identify unmet educational needs of PH+ CML patients 5. Advise Novartus on the development of meaningful patient education and support programs. That is a handful eh? I must be approved with the consent form and then they will contact me. I mailed it in today. Meanwhile, I am collecting all sorts of questions for them. Some are: 1. What is being developed in case tasigna fails? 2. What can you do about contacting the state insurance comissions informing them of drug and testing protocol so they don't deny testing procedures? 3. Where do we find out what QT prolongation is and how can they explain it to us in laymen's terms? 4. I would love easy-to-understand data on the trials prior to our going on it. The Blood Magazine is incredibly difficult for those without chemestry to understand. 5. I think the way they work or don't work with insurances would be important. I have copied and kept every post from you all so I can effectively remember and represent as many as possible on this endeavor. Thanks for all your feedback. My blessings and all good things. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 I would fly my flag for all of you any day... any time. You are my brother and sister survivors... my second family. Be well and know that you are appreciated!! Barb > > Hi Barb - I am catching up with all the emails since I have been on a short > break. That is fabulous news re your invite - I certainly hope you can fly > the flag for us! > > > > Regards, > > > > > > from Down Under > > > > > > > > From: [mailto: ] On Behalf Of Barb > Stanley > Sent: Monday, 9 March 2009 1:32 PM > > Subject: [ ] Sharon, Skip, and Matt > > > > I really think that the patient advocacy coordinator at my oncologist office > sent this to me. I think that the Novartis rep probably said mail this to > who you think would be good for this kind of thing. I was their first > Tasigna patient in January of 2007. She has saved me all the BLOOD magazines > that contain the blood cancer information. She also knows I am connected > with many online support groups. > > The folder says it is a Patient Advisory Board for patients on a second line > treatment for a Philidelphia Chromosome Positive CML. The meeting is > supposed to do the following: > 1. Exchange experiences on living and managing PH+ CML > 2. Discuss the past and current treatments > 3. Share insights on practical management approaches > 4. Identify unmet educational needs of PH+ CML patients > 5. Advise Novartus on the development of meaningful patient education and > support programs. > > That is a handful eh? > I must be approved with the consent form and then they will contact me. I > mailed it in today. > Meanwhile, I am collecting all sorts of questions for them. > Some are: > 1. What is being developed in case tasigna fails? > 2. What can you do about contacting the state insurance comissions informing > them of drug and testing protocol so they don't deny testing procedures? > 3. Where do we find out what QT prolongation is and how can they explain it > to us in laymen's terms? > 4. I would love easy-to-understand data on the trials prior to our going on > it. The Blood Magazine is incredibly difficult for those without chemestry > to understand. > 5. I think the way they work or don't work with insurances would be > important. > I have copied and kept every post from you all so I can effectively remember > and represent as many as possible on this endeavor. > Thanks for all your feedback. > My blessings and all good things. > Barb > > > > > > Quote Link to comment Share on other sites More sharing options...
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