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“Woes at MDAnderson” …..go away from here

Forums Caregiver Community “Woes at MDAnderson” …..go away from here

  • Post
    Cielo
    Participant

      I think it is politically incorrect of you to post this topic here.  You are NED, so please go somewhere else where you can plant your turmeric seed and add some guayabano along with it. 

      For those of us whose hanging on to whatever little hope we have left, who are looking for encouragement and not discouragement,  don't need to read into such topic in this forum. 

      I think it is politically incorrect of you to post this topic here.  You are NED, so please go somewhere else where you can plant your turmeric seed and add some guayabano along with it. 

      For those of us whose hanging on to whatever little hope we have left, who are looking for encouragement and not discouragement,  don't need to read into such topic in this forum. 

      My husband is currently admitted at MDAnderson.  After going through a ten-day WBR, his brain has swelled up and as the only caregiver, things became worse for me to handle so I got him admitted.  We have been here for a week and hoping to get out this weekend. We never felt threatened in anyway that treatment was lacking thereof, infact, we are treated like royalties.  Our main Onc here came to talk to me for Plans B and C.

      Cielo

    Viewing 17 reply threads
    • Replies
        Fen
        Participant

          I, too, found the post inappropriate at best.  The off topic board would be a better place to post that information.

          Fen
          Participant

            I, too, found the post inappropriate at best.  The off topic board would be a better place to post that information.

            Fen
            Participant

              I, too, found the post inappropriate at best.  The off topic board would be a better place to post that information.

              MichaelFL
              Participant

                The poster thrives on controversy. The majority of his posts are not suitable for this board.

                MichaelFL
                Participant

                  The poster thrives on controversy. The majority of his posts are not suitable for this board.

                  MichaelFL
                  Participant

                    The poster thrives on controversy. The majority of his posts are not suitable for this board.

                    JC
                    Participant

                      I'm not sure why posting information is inappropriate, even if the information is not what you want to hear.  People come to this site for information (in addition to for encouragement), and sometimes the information is not what we want to hear, but it is what it is.  Not knowing it doesn't change it from being what it is.

                      JC
                      Participant

                        I'm not sure why posting information is inappropriate, even if the information is not what you want to hear.  People come to this site for information (in addition to for encouragement), and sometimes the information is not what we want to hear, but it is what it is.  Not knowing it doesn't change it from being what it is.

                        JC
                        Participant

                          I'm not sure why posting information is inappropriate, even if the information is not what you want to hear.  People come to this site for information (in addition to for encouragement), and sometimes the information is not what we want to hear, but it is what it is.  Not knowing it doesn't change it from being what it is.

                          Linny
                          Participant

                            You people just need to chill out and get over yourselves.

                            You're not going to like or agree with everything you read here or in any other forum, for that matter. That doesn't mean it's inappropriate. Just because you don't like or "approve" of something doesn't mean someone else will feel like you do.

                            If, as a rule, you don't care for what a particular individual posts, then don't read any posts written by them.

                            Yes, it really is that simple.

                            Linny
                            Participant

                              You people just need to chill out and get over yourselves.

                              You're not going to like or agree with everything you read here or in any other forum, for that matter. That doesn't mean it's inappropriate. Just because you don't like or "approve" of something doesn't mean someone else will feel like you do.

                              If, as a rule, you don't care for what a particular individual posts, then don't read any posts written by them.

                              Yes, it really is that simple.

                              Linny
                              Participant

                                You people just need to chill out and get over yourselves.

                                You're not going to like or agree with everything you read here or in any other forum, for that matter. That doesn't mean it's inappropriate. Just because you don't like or "approve" of something doesn't mean someone else will feel like you do.

                                If, as a rule, you don't care for what a particular individual posts, then don't read any posts written by them.

                                Yes, it really is that simple.

                                bj63
                                Participant

                                  Seems to me that someone is trying to soft-sell subscriptions to his web site.  Borderline spam, IMHO.

                                  bj63
                                  Participant

                                    Seems to me that someone is trying to soft-sell subscriptions to his web site.  Borderline spam, IMHO.

                                      Gene_S
                                      Participant

                                        Please inform us where we can find said website!

                                        Gene_S
                                        Participant

                                          Please inform us where we can find said website!

                                          Gene_S
                                          Participant

                                            Please inform us where we can find said website!

                                          bj63
                                          Participant

                                            Seems to me that someone is trying to soft-sell subscriptions to his web site.  Borderline spam, IMHO.

                                            Charlie S
                                            Participant

                                              This is a very telling example of how to lie with statistics .

                                              Upon further reading, one will find that this report is based upon a one third response rate.  That means that three out of ten employees offered an opinion.  Seven out of ten did not offer an opinion.

                                              Of those three out of ten, half said this and half said that………..which means half of one third. …..one sixth .. which equates to one and one half of ten employees are waving their arms and crying foul play in this example.

                                              Hardly a majority and certainly not an uprising; nor a factual representation of actual patient outcome.

                                              Nor was this a genuine "study" in the scientific sense; which means repeatable

                                              On a grander scale, what is one to beleive:  Documented patient majority outcomes or implied bias?

                                              I take the former and not the latter posture as far as MDA.

                                              Nobody else will say it, but I will:

                                              Almost 14 years I have been a participant on MPIP and I have never seen such a dichotomy of success and anger that you display Gene

                                              Fankly Gene, this is another example of why I view you as dangerous and disengenuos when you post this kind of nonsense that strikes me as nothing more than your own mental masturbation and self gratification at the expense of others.

                                              You have benefited from the advance of science, but you insist on telling others of failures rather than accomplishements.  Are you that angry you are living?

                                              Bring some knowledge and encouragement here, not your supermarket version of the Melanoma Enquirer.

                                              Oops, sorry Cielo, forgot to acknowledge you; but I agree with you.  Not necessarily about being politically correct, but recognizing recto cranial inversion.

                                              Cheers ,

                                              Charlie S

                                              Charlie S
                                              Participant

                                                This is a very telling example of how to lie with statistics .

                                                Upon further reading, one will find that this report is based upon a one third response rate.  That means that three out of ten employees offered an opinion.  Seven out of ten did not offer an opinion.

                                                Of those three out of ten, half said this and half said that………..which means half of one third. …..one sixth .. which equates to one and one half of ten employees are waving their arms and crying foul play in this example.

                                                Hardly a majority and certainly not an uprising; nor a factual representation of actual patient outcome.

                                                Nor was this a genuine "study" in the scientific sense; which means repeatable

                                                On a grander scale, what is one to beleive:  Documented patient majority outcomes or implied bias?

                                                I take the former and not the latter posture as far as MDA.

                                                Nobody else will say it, but I will:

                                                Almost 14 years I have been a participant on MPIP and I have never seen such a dichotomy of success and anger that you display Gene

                                                Fankly Gene, this is another example of why I view you as dangerous and disengenuos when you post this kind of nonsense that strikes me as nothing more than your own mental masturbation and self gratification at the expense of others.

                                                You have benefited from the advance of science, but you insist on telling others of failures rather than accomplishements.  Are you that angry you are living?

                                                Bring some knowledge and encouragement here, not your supermarket version of the Melanoma Enquirer.

                                                Oops, sorry Cielo, forgot to acknowledge you; but I agree with you.  Not necessarily about being politically correct, but recognizing recto cranial inversion.

                                                Cheers ,

                                                Charlie S

                                                  POW
                                                  Participant

                                                    While it is distressing to think that a fine institution that we patients and caregivers look up to is being rocked by internal strife, it does not mean that the quality of care for melanoma patients has or will suffer. Such "morale problems" have probably been going on for a long time, and we patients never knew about it or suffered because of it. And it certainly does not mean that MD Anderson should be struck from our list of preferred treatment centers.

                                                    I suspect that if the same survey was conducted in any other large, well-respected cancer center the results would be pretty much the same. Whenever you have a large bureaurocacy, big egos, fat paychecks, and insane profit margins, there will be jealousy, strife, and discontent. If we are tempted to avoid MD Anderson because of this report, should we also avoid Sloan Kettering, Moffitt, UCLA, and the Mayo Clinic? After all, their internal laundry is probably just as dirty as Anderson's. 

                                                    Melanoma patients and their caregivers have enough to worry about just dealing with this disease. Let's not get sucked into medical politics that we personally know nothing about. And let's not fight with each other. That diminishes the warm and supportive atmosphere we are trying to create here. I think that if someone wants to post factual but distressing information, post it on the Off-Topic forum where interested parties can read it if they wish, but the general population can avoid the bad news. On the other hand, if someone does post something that offends you, ignore it. Getting involved in angry exchanges and personal attacks only upsets people and diminishes the forum. Let it slide, people! Put your emotions and your energy where they need to go– to beating the beast!

                                                    POW
                                                    Participant

                                                      While it is distressing to think that a fine institution that we patients and caregivers look up to is being rocked by internal strife, it does not mean that the quality of care for melanoma patients has or will suffer. Such "morale problems" have probably been going on for a long time, and we patients never knew about it or suffered because of it. And it certainly does not mean that MD Anderson should be struck from our list of preferred treatment centers.

                                                      I suspect that if the same survey was conducted in any other large, well-respected cancer center the results would be pretty much the same. Whenever you have a large bureaurocacy, big egos, fat paychecks, and insane profit margins, there will be jealousy, strife, and discontent. If we are tempted to avoid MD Anderson because of this report, should we also avoid Sloan Kettering, Moffitt, UCLA, and the Mayo Clinic? After all, their internal laundry is probably just as dirty as Anderson's. 

                                                      Melanoma patients and their caregivers have enough to worry about just dealing with this disease. Let's not get sucked into medical politics that we personally know nothing about. And let's not fight with each other. That diminishes the warm and supportive atmosphere we are trying to create here. I think that if someone wants to post factual but distressing information, post it on the Off-Topic forum where interested parties can read it if they wish, but the general population can avoid the bad news. On the other hand, if someone does post something that offends you, ignore it. Getting involved in angry exchanges and personal attacks only upsets people and diminishes the forum. Let it slide, people! Put your emotions and your energy where they need to go– to beating the beast!

                                                      POW
                                                      Participant

                                                        While it is distressing to think that a fine institution that we patients and caregivers look up to is being rocked by internal strife, it does not mean that the quality of care for melanoma patients has or will suffer. Such "morale problems" have probably been going on for a long time, and we patients never knew about it or suffered because of it. And it certainly does not mean that MD Anderson should be struck from our list of preferred treatment centers.

                                                        I suspect that if the same survey was conducted in any other large, well-respected cancer center the results would be pretty much the same. Whenever you have a large bureaurocacy, big egos, fat paychecks, and insane profit margins, there will be jealousy, strife, and discontent. If we are tempted to avoid MD Anderson because of this report, should we also avoid Sloan Kettering, Moffitt, UCLA, and the Mayo Clinic? After all, their internal laundry is probably just as dirty as Anderson's. 

                                                        Melanoma patients and their caregivers have enough to worry about just dealing with this disease. Let's not get sucked into medical politics that we personally know nothing about. And let's not fight with each other. That diminishes the warm and supportive atmosphere we are trying to create here. I think that if someone wants to post factual but distressing information, post it on the Off-Topic forum where interested parties can read it if they wish, but the general population can avoid the bad news. On the other hand, if someone does post something that offends you, ignore it. Getting involved in angry exchanges and personal attacks only upsets people and diminishes the forum. Let it slide, people! Put your emotions and your energy where they need to go– to beating the beast!

                                                        Bubbles
                                                        Participant

                                                          Cielo, I am sorry that it was difficult for you to read these sorts of things while depending on this very institution at this moment.  I know that it must put your emotions in a very dificult position at a difficult time in your life. And, Charlie…YOU ARE AWESOME!!!  I have thought many times….Why is it that Gene, who enjoyed great success in treating his melanoma with ipi, reccommends that others treat their melanoma with pouring water on their feet while standing in sand and avoiding artificial sweeteners along with all sorts of random gobble-de-gook????!!!!  Do they not deserve the treatments HE had an opportunity to utilize???  And then he's off on tangets that implicate sun screens themselves as a cause of melanoma!!!  Seriously.  I don't get it.  And, yes…POW….it would be lovely if everything was perfect and we just let everything we don't like slide off like water from a duck.  The sad fact is that many desperate people look to sites like this one as a source of real support and information.  Gene would be such a great help to so very many if he helped them find, access, and acquire payor sources for the ipi he reaped such benefit from instead of quacking like a duck and leading the unsuspecting down a very strange, unproven, unscientific, and useless path.  Some of us work very hard to provide support to others and to get out the most scientifically accurate and up-to-date information to those who may not have access otherwise….in our blogs and sometimes on these forums. There are times when the feelings of others have been ignored and myth is posted rather than facts. When that happens, we consider it our duty to speak out.

                                                          It would help if the MPIP site did a better job of filtering such things.  But, in lieu of that….thanks for standing up, Charlie.

                                                          Celeste

                                                          Bubbles
                                                          Participant

                                                            Cielo, I am sorry that it was difficult for you to read these sorts of things while depending on this very institution at this moment.  I know that it must put your emotions in a very dificult position at a difficult time in your life. And, Charlie…YOU ARE AWESOME!!!  I have thought many times….Why is it that Gene, who enjoyed great success in treating his melanoma with ipi, reccommends that others treat their melanoma with pouring water on their feet while standing in sand and avoiding artificial sweeteners along with all sorts of random gobble-de-gook????!!!!  Do they not deserve the treatments HE had an opportunity to utilize???  And then he's off on tangets that implicate sun screens themselves as a cause of melanoma!!!  Seriously.  I don't get it.  And, yes…POW….it would be lovely if everything was perfect and we just let everything we don't like slide off like water from a duck.  The sad fact is that many desperate people look to sites like this one as a source of real support and information.  Gene would be such a great help to so very many if he helped them find, access, and acquire payor sources for the ipi he reaped such benefit from instead of quacking like a duck and leading the unsuspecting down a very strange, unproven, unscientific, and useless path.  Some of us work very hard to provide support to others and to get out the most scientifically accurate and up-to-date information to those who may not have access otherwise….in our blogs and sometimes on these forums. There are times when the feelings of others have been ignored and myth is posted rather than facts. When that happens, we consider it our duty to speak out.

                                                            It would help if the MPIP site did a better job of filtering such things.  But, in lieu of that….thanks for standing up, Charlie.

                                                            Celeste

                                                            Bubbles
                                                            Participant

                                                              Cielo, I am sorry that it was difficult for you to read these sorts of things while depending on this very institution at this moment.  I know that it must put your emotions in a very dificult position at a difficult time in your life. And, Charlie…YOU ARE AWESOME!!!  I have thought many times….Why is it that Gene, who enjoyed great success in treating his melanoma with ipi, reccommends that others treat their melanoma with pouring water on their feet while standing in sand and avoiding artificial sweeteners along with all sorts of random gobble-de-gook????!!!!  Do they not deserve the treatments HE had an opportunity to utilize???  And then he's off on tangets that implicate sun screens themselves as a cause of melanoma!!!  Seriously.  I don't get it.  And, yes…POW….it would be lovely if everything was perfect and we just let everything we don't like slide off like water from a duck.  The sad fact is that many desperate people look to sites like this one as a source of real support and information.  Gene would be such a great help to so very many if he helped them find, access, and acquire payor sources for the ipi he reaped such benefit from instead of quacking like a duck and leading the unsuspecting down a very strange, unproven, unscientific, and useless path.  Some of us work very hard to provide support to others and to get out the most scientifically accurate and up-to-date information to those who may not have access otherwise….in our blogs and sometimes on these forums. There are times when the feelings of others have been ignored and myth is posted rather than facts. When that happens, we consider it our duty to speak out.

                                                              It would help if the MPIP site did a better job of filtering such things.  But, in lieu of that….thanks for standing up, Charlie.

                                                              Celeste

                                                              benp
                                                              Participant

                                                                Perfectly said Celeste. Thank you.

                                                                Ben.

                                                                benp
                                                                Participant

                                                                  Perfectly said Celeste. Thank you.

                                                                  Ben.

                                                                  benp
                                                                  Participant

                                                                    Perfectly said Celeste. Thank you.

                                                                    Ben.

                                                                    bcl
                                                                    Participant

                                                                      "Why is it that Gene, who enjoyed great success in treating his melanoma with ipi, reccommends that others treat their melanoma with pouring water on their feet while standing in sand and avoiding artificial sweeteners along with all sorts of random gobble-de-gook????!!!! "     

                                                                       

                                                                       great point (and post) Celeste, I wonder too..

                                                                      bcl
                                                                      Participant

                                                                        "Why is it that Gene, who enjoyed great success in treating his melanoma with ipi, reccommends that others treat their melanoma with pouring water on their feet while standing in sand and avoiding artificial sweeteners along with all sorts of random gobble-de-gook????!!!! "     

                                                                         

                                                                         great point (and post) Celeste, I wonder too..

                                                                        bcl
                                                                        Participant

                                                                          "Why is it that Gene, who enjoyed great success in treating his melanoma with ipi, reccommends that others treat their melanoma with pouring water on their feet while standing in sand and avoiding artificial sweeteners along with all sorts of random gobble-de-gook????!!!! "     

                                                                           

                                                                           great point (and post) Celeste, I wonder too..

                                                                        Charlie S
                                                                        Participant

                                                                          This is a very telling example of how to lie with statistics .

                                                                          Upon further reading, one will find that this report is based upon a one third response rate.  That means that three out of ten employees offered an opinion.  Seven out of ten did not offer an opinion.

                                                                          Of those three out of ten, half said this and half said that………..which means half of one third. …..one sixth .. which equates to one and one half of ten employees are waving their arms and crying foul play in this example.

                                                                          Hardly a majority and certainly not an uprising; nor a factual representation of actual patient outcome.

                                                                          Nor was this a genuine "study" in the scientific sense; which means repeatable

                                                                          On a grander scale, what is one to beleive:  Documented patient majority outcomes or implied bias?

                                                                          I take the former and not the latter posture as far as MDA.

                                                                          Nobody else will say it, but I will:

                                                                          Almost 14 years I have been a participant on MPIP and I have never seen such a dichotomy of success and anger that you display Gene

                                                                          Fankly Gene, this is another example of why I view you as dangerous and disengenuos when you post this kind of nonsense that strikes me as nothing more than your own mental masturbation and self gratification at the expense of others.

                                                                          You have benefited from the advance of science, but you insist on telling others of failures rather than accomplishements.  Are you that angry you are living?

                                                                          Bring some knowledge and encouragement here, not your supermarket version of the Melanoma Enquirer.

                                                                          Oops, sorry Cielo, forgot to acknowledge you; but I agree with you.  Not necessarily about being politically correct, but recognizing recto cranial inversion.

                                                                          Cheers ,

                                                                          Charlie S

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