Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Hi Neal, I am certainly not happy to have CML and no one in their right mind would wish this disease on another person......a positive attitude does wonders for your health and nothing anyone does or says will change the fact that I/we have CML......why spend the energy trying to fight something you can't change? You CAN change how you react to life's reality on a minute by minute basis. This is something that takes pracitce and perserverance, but it does change your outlook on life - at least it does mine! Good luck in the future and I hope everything works out for you....... ________________________________ From: Neal <nwatson@...> Sent: Tue, January 25, 2011 11:06:00 AM Subject: [ ] Happy With CML  Okay, I am going to go against the grain here. I am all for being happy to be alive - I know I am - but I think to some extent we should be angry about having CML. It is not as if we are suffering the fate of an inherited disease or caught it from some random person on the street. Neither is it as if we are alive by the good will of Novartis and BMS. We were given this disease by environmental toxins, so someone somewhere could make a buck, and then Big-Pharma rapes us with 1000% + mark-ups, while many of us struggle to live as semi-invalids. I say, don't be happy about living with CML. Be ticked off, but live life and be as joyful as you can be in any case. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Research into how attitude affects health is inconclusive, and I think in general it is pushed as a method of pacifying populations. There are many things that can be changed only if we fight - exploitation/poverty of disabled peoples, exploitative practices of Pharma, the poisoning of peoples by corporations and military, ect. We can fight a system that encourages the big money to be invested in treatment research, rather than research for cures, which may effect whether we will have CML in the future. [ ] Happy With CML Okay, I am going to go against the grain here. I am all for being happy to be alive - I know I am - but I think to some extent we should be angry about having CML. It is not as if we are suffering the fate of an inherited disease or caught it from some random person on the street. Neither is it as if we are alive by the good will of Novartis and BMS. We were given this disease by environmental toxins, so someone somewhere could make a buck, and then Big-Pharma rapes us with 1000% + mark-ups, while many of us struggle to live as semi-invalids. I say, don't be happy about living with CML. Be ticked off, but live life and be as joyful as you can be in any case. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Neal    - Only thing that comes to mind here is that they must be casting Grumpy Old Men 3 in your neck of the woods!  Hope this makes you laugh instead of cry,  Old but not too Grumpy here. From: Neal <nwatson@...> Subject: RE: [ ] Happy With CML Date: Tuesday, January 25, 2011, 2:23 PM  Research into how attitude affects health is inconclusive, and I think in general it is pushed as a method of pacifying populations. There are many things that can be changed only if we fight - exploitation/poverty of disabled peoples, exploitative practices of Pharma, the poisoning of peoples by corporations and military, ect. We can fight a system that encourages the big money to be invested in treatment research, rather than research for cures, which may effect whether we will have CML in the future. [ ] Happy With CML Okay, I am going to go against the grain here. I am all for being happy to be alive - I know I am - but I think to some extent we should be angry about having CML. It is not as if we are suffering the fate of an inherited disease or caught it from some random person on the street. Neither is it as if we are alive by the good will of Novartis and BMS. We were given this disease by environmental toxins, so someone somewhere could make a buck, and then Big-Pharma rapes us with 1000% + mark-ups, while many of us struggle to live as semi-invalids. I say, don't be happy about living with CML. Be ticked off, but live life and be as joyful as you can be in any case. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 If anger at social injustice is grumpy and 30 is old, you can call me a grumpy old man. RE: [ ] Happy With CML Neal - Only thing that comes to mind here is that they must be casting Grumpy Old Men 3 in your neck of the woods! Hope this makes you laugh instead of cry, Old but not too Grumpy here. .. <http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI d=24263/stime=1295984094/nc1=5191951/nc2=5191948/nc3=4507179> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Grumpier than me - but not older. Â Hoping for improvement for you and the world. From: Neal <nwatson@...> Subject: RE: [ ] Happy With CML Date: Tuesday, January 25, 2011, 2:49 PM Â If anger at social injustice is grumpy and 30 is old, you can call me a grumpy old man. RE: [ ] Happy With CML Neal - Only thing that comes to mind here is that they must be casting Grumpy Old Men 3 in your neck of the woods! Hope this makes you laugh instead of cry, Old but not too Grumpy here. .. <http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI d=24263/stime=1295984094/nc1=5191951/nc2=5191948/nc3=4507179> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Hi Tom: I certainly can relate to everything you just said. I Thank God for each day, and I do not rush to do anything. I feel it will get done, like standing in line at a supermarket. I see people with a few items, and I have a cart full. Just let them go ahead instead of waiting for my big order. Sitting at a traffic light, no big deal. I do try to think positive thoughts, and sometimes you cannot do it. I try to think of how fortunate I am to be where I am and not where I used to be. Some days are rougher than others, but you get through it. I sometimes think about something that upset me weeks ago, but here I am still trudging along and whatever it was its taken care of. God Bless You > > Hi Neal, > > I am certainly not happy to have CML and no one in their right mind would wish > this disease on another person......a positive attitude does wonders for your > health and nothing anyone does or says will change the fact that I/we have > CML......why spend the energy trying to fight something you can't change? > > > You CAN change how you react to life's reality on a minute by minute basis. > This is something that takes pracitce and perserverance, but it does change your > outlook on life - at least it does mine! > > Good luck in the future and I hope everything works out for you....... > > > > > ________________________________ > From: Neal <nwatson@...> > > Sent: Tue, January 25, 2011 11:06:00 AM > Subject: [ ] Happy With CML > >  > Okay, I am going to go against the grain here. > > I am all for being happy to be alive - I know I am - but I think to some > extent we should be angry about having CML. It is not as if we are suffering > the fate of an inherited disease or caught it from some random person on the > street. Neither is it as if we are alive by the good will of Novartis and > BMS. We were given this disease by environmental toxins, so someone > somewhere could make a buck, and then Big-Pharma rapes us with 1000% + > mark-ups, while many of us struggle to live as semi-invalids. > > I say, don't be happy about living with CML. Be ticked off, but live life > and be as joyful as you can be in any case. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Hi Neal, I took some time to do a google search on positive mental attitude and chronic disease. There are a lot of pages that tout the benefits of a PMA and dealing with a chronic disease. The only confirmed case that I remember of the positive impact of a PMA was a study done 5 or 6 years ago about religious belief and the healing effects. I think they proved that it worked....... Certainly a PMA has been proven to reduce stress and anxiety, which reduces some of the issues surrounding a chronic disease. If there is some proven, social injustice being done, by all means let me know the specifics and I will throw my passion behind righting what needs to be done. If there are companies in this world that knowingly used chemicals that caused me to get CML, please let me know and I will do a " Brocovich " on their door step until they stop. I am not ignoring the pain that we all feel on a daily basis, nor the worry we all have regarding the what ifs we deal with, nor the realities of life (yes, we all have to pay bills and live on a budget)....I am just choosing to spend my time and energy in a positive manner. I hope peace and comfort find you soon. A good and easy book to read would be the 4 agreements....great reading and some easy words to live by.    1. Always do your best    2. Be impeccable with your word    3. Don't take things personally    4. Don't make assumptions There are varying degrees of these 4 items in a variety of philosophical books, including the religious ones. Anyway.....these make sense to me and I try to use them in my life as I find them very powerful. Good luck in the future and let us know what or how I can help?  ________________________________ From: Neal <nwatson@...> Sent: Tue, January 25, 2011 12:49:41 PM Subject: RE: [ ] Happy With CML  If anger at social injustice is grumpy and 30 is old, you can call me a grumpy old man. RE: [ ] Happy With CML Neal - Only thing that comes to mind here is that they must be casting Grumpy Old Men 3 in your neck of the woods! Hope this makes you laugh instead of cry, Old but not too Grumpy here. .. <http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI d=24263/stime=1295984094/nc1=5191951/nc2=5191948/nc3=4507179> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Hi Tom, You must be the Lance Armstrong of the CML world! I have been lurking for a while as too busy here worrying about friends and families who are suffering in our Australian floods crisis. I fully agree that we need to get on with life and live it to the best. I must say when I was first dx, in hindsight I refused to accept that I couldn't do things as I could pre CML as Glivec made my life hell and I made my life hell by not slowing down. Then as I was changing from Glivec to Tasigna, my husband had a stroke a year later and I found it difficult to manage full time work and look after him in the early days. The best thing that happened was I gave up work - it was very difficult financially, but I have found that we can do without all the extras we had and still lead an OK life. I now receive the carers pension for my husband and you know the best thing that came out of all this? I now have the time to help my daughter and her husband and babysit my 3 grandchildren - 9 months, 3 years and nearly 5 years, 2-3 times a week. One door closes, another door opens. I am truly blessed and although my husband finds it trying with the g'kids at times especially when they are screaming as it gives him a terrible headache, he just loves having them come. The other day we had people come to look at our Labrador puppies and they didn't think it was our place (we shifted off our farm onto 1/2 acre in town) as it looked like a 'young' families home, with the swings and trampoline! I took that as a big compliment and although I am 54 this year and Greg is 57, I for one am going to continue to LIVE life. Cheers Dx 25/07/07 # 1149 Zavies Zero Club PCRU since Dec 2008 From: Tom Ratzlaff <archer591@...> Cc: Sent: Wednesday, 26 January 2011 11:07 AM Subject: Re: [ ] Happy With CML  Hi Neal, I took some time to do a google search on positive mental attitude and chronic disease. There are a lot of pages that tout the benefits of a PMA and dealing with a chronic disease. The only confirmed case that I remember of the positive impact of a PMA was a study done 5 or 6 years ago about religious belief and the healing effects. I think they proved that it worked....... Certainly a PMA has been proven to reduce stress and anxiety, which reduces some of the issues surrounding a chronic disease. If there is some proven, social injustice being done, by all means let me know the specifics and I will throw my passion behind righting what needs to be done. If there are companies in this world that knowingly used chemicals that caused me to get CML, please let me know and I will do a " Brocovich " on their door step until they stop. I am not ignoring the pain that we all feel on a daily basis, nor the worry we all have regarding the what ifs we deal with, nor the realities of life (yes, we all have to pay bills and live on a budget)....I am just choosing to spend my time and energy in a positive manner. I hope peace and comfort find you soon. A good and easy book to read would be the 4 agreements....great reading and some easy words to live by.    1. Always do your best    2. Be impeccable with your word    3. Don't take things personally    4. Don't make assumptions There are varying degrees of these 4 items in a variety of philosophical books, including the religious ones. Anyway.....these make sense to me and I try to use them in my life as I find them very powerful. Good luck in the future and let us know what or how I can help?  ________________________________ From: Neal <nwatson@...> Sent: Tue, January 25, 2011 12:49:41 PM Subject: RE: [ ] Happy With CML  If anger at social injustice is grumpy and 30 is old, you can call me a grumpy old man. RE: [ ] Happy With CML Neal - Only thing that comes to mind here is that they must be casting Grumpy Old Men 3 in your neck of the woods! Hope this makes you laugh instead of cry, Old but not too Grumpy here. .. <http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI d=24263/stime=1295984094/nc1=5191951/nc2=5191948/nc3=4507179> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Hi Neal Sorry, but I have to stick my penneth in here - Neal, I tend to agree with you. I am now almost 50, diagnosed five years ago, at 45. You are very young at 30, and that's what people are forgetting. CML is supposed to be an " older " person's disease, not a young person. Without discriminating anyone here (and that's hard on this board), I think if I'd been diagnosed when I was 60 onwards or even 55, I would've been far more accepting than I was. I feel very very very sorry for any youngster with this disease. Actually the disease itself is a psychological obstacle, the side effects of the (wonderful) medicines can be the killer. I took 800mg for four years and believe me, that was very hard. I'm now on 600mg and do find it more tolerable. HOWEVER, the impact it's had on my body is immense. I have accepted it, but I can't say that I " like " it. I do work fulltime (from home, I might add), but most days get extremely fatigued. The other side of the coin is that without Glivec (to us Aussies), where would I be? I know where I'd be ... Pecker up, mate, you're still alive however hard it is for you. You're young and probably supporting a wife and kids, so I can very well understand you. Jackie _____ From: [mailto: ] On Behalf Of Mr Stickel Sent: Wednesday, 26 January 2011 6:56 AM Subject: RE: [ ] Happy With CML Grumpier than me - but not older. Hoping for improvement for you and the world. From: Neal <nwatson@... <mailto:nwatson%40kriegerandstewart.com> > Subject: RE: [ ] Happy With CML <mailto:%40> Date: Tuesday, January 25, 2011, 2:49 PM If anger at social injustice is grumpy and 30 is old, you can call me a grumpy old man. RE: [ ] Happy With CML Neal - Only thing that comes to mind here is that they must be casting Grumpy Old Men 3 in your neck of the woods! Hope this makes you laugh instead of cry, Old but not too Grumpy here. .. <http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI d=24263/stime=1295984094/nc1=5191951/nc2=5191948/nc3=4507179> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 What great discussions! No one is happy to have cml and it is our individual choice on how to live with however you define cml. I am 50 and feel 25.....does that count as being young? Sent via mobile phone. Please excuse brevity and grammar. Tom Ratzlaff Centennial insurance Agency RE: [ ] Happy With CML Grumpier than me - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Dear Tom You bet it does! I've had CML 7 years this July! PCRU for 4 years. On Tasigna for 3 years. No side effects-68 next month-15 grand children and feel 40 ! Sharon Sent via BlackBerry by AT & T RE: [ ] Happy With CML Grumpier than me - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 We can fight a > system that encourages the big money to be invested in treatment research, > rather than research for cures, which may effect whether we will have CML in > the future. ________________________________ Neal, we have had this conversation before and I don't expect to influence your thinking, so I am responding to your comments for the benefit of others......the more optimistic majority! surely you have noticed that your line of thinking is in the minority. I don't think anyone really said 'be happy you are living with cml' except to mean, better alive with cml then dead with cml. People can choose to be happy DESPITE having cml, and many of this list do that. When Dr. Druker, an independent University cancer researcher did all the pre-trials and then the trials on Gleevec, he was not part of BIG pharma....and he was working for a cure!!! He is still researching and working for a cure for cml and other leukemias (and maybe other cancers in his new expanded lab). Early on they realized that there would be mutations that Gleevec would not work on....and all these other drugs have been to address the mutations and now they finally have a drug that will deal with the dreaded T315I mutation. So, they won't need more of these look alike drugs to be developed and there probably won't be a market for them......but it will take new 'out of the box' thinking to figure out how to actually cure cml. Dr. Druker gave 5 years to this....then said he needed to focus elsewhere...but he has recruited new researchers to his lab (that was in the works) to bring in some fresh ideas to test. So, your anger is not really based in the facts. I think you are angry just to be angry....and I will leave it at that. When a convention of cmlers gets together at a future time, maybe to celebrate Dr. Druker and a few others getting a Nobel Prize in Medicine for the accomplishments they brought to the treatment of cml, I think I will hang out with Lottie and Tom and and..... (actually there are many cmlers on the original trials for Gleevec/STI571 who have said the are waiting for this party!!) C. Quote Link to comment Share on other sites More sharing options...
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