Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 > > Maybe I'm misinformed or just sensitive, but I think that for a lot of us, > we still have a death threat hanging over our heads. For those of us at the > younger end of the age spectrum, it seems that the current prognosis is that > if we don't eventually become resistant to the drugs, we will probably > eventually die from the drugs. I just can't imagine that taking chemo every > day, with all the accompanying side effects, isn't permanently damaging us. ___________________________________ Neal, I don't think you are very well informed by your oncologist.....wasn't he the one who said maybe you needed a BMT!!! (a big false alarm) and the problem that goes along with not having the best information is that you don't have as much confidence either. A specialist like Dr. Druker will tell a newly diagnosed patient, regardless of age, that they most likely have a chronic manageable disease and will die of something else not associated with CML. The bulk of the side effects from the TKIs are not life threatening....and most of the cases of cml patients who have died from the disease were not diagnosed in the chronic phase, or had other medical problems that complicated their treatment. The early Gleevec patient that died of heart issues had pre-existing heart problems. Obviously no one can say for sure what being on one of these drugs for 20-30+ years will do to a person......but what is true, is that when there is a major problem associated with a drug, it shows up earlier rather than later. We now have people who have been on these drugs for 12+ years and there is not increase in deaths associated with the drugs. The same is true for drug resistance, if it does not crop up early, in the first 2-3 years, it is much less likely to happen at all. So, I don't know where your idea of the 'current prognosis' that you will either become resistant to the drugs or die from them comes from??? Personally, I trust the opinions of cml specialists like Dr. Druker and Dr. Talpaz, and they do not express these beliefs. If I had an oncologist who scared me about needing a BMT when it was not true, I would question everything that he told me....and would probably see if I could find a more knowledgeable doctor. Everyone I know who has decided to put their hands in the care of a true cml specialist has never regretted it.....and has felt that the peace of mind was worth the expense. Just my 2-cents, but I am 12 years out, not a great responder to the TKIs but I am not going to live feeling that I have a death threat hanging over me. C. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 Hi , I feel the same way. But even when I was dx over 15 yrs ago,I wasn't frightened, when I should have been, as the word CHRONIC was there. I remember thinking, chronic meant something you could live with, with medication, so how bad could CML be? Today I never even think of it. I take my Ariad for CML, along with my BP pills, my PAD pills, my GERD pills, potassium, ferrous sulphate, aspirin, my Cholesterol pills, try and remember to drink lots of water, and get on with my day. My problem lies in remembering to take them all and that is a PAIN in the ASS!! LOL I just lost a friend to lung cancer, terrible death. I have another dear friend who has multiple cancers and has undergone extreme chemo, to no avail so far. I have another friend who suffered an aneurysm and was in the hospital for a year, just now starting to do small things for herself. Do I worry about CML? Good grief no. When I was first DX I sought our a LLS therapy group and the speaker said something I never forgot. When we are first DX we say, no, this can't be happening to me, Denial. Then we get angry and think, why did this happen to me. And lastly when we adapt to it, we realize we are lucky we don't have bone cancer, or a brain tumor.   I did not go through the first two, maybe because I have always know I would die of cancer, it is a primary disease in my family, so I wasn't shocked to have it hit me twice. And I have always felt lucky that it was not a more severe form of cancer, even back when Interferon was the only treatment. I am most fortunate now to be on a drug that does not have side effects, but I have been the route with most of them. I don't mean to say no one will have side effects from Ariad, Lottie will most likely start on 45 mg. I started on 15mg. Big difference. Where I am fortunate, as with Sprycel, a low dose of Ariad has worked well for me. My only real problem is I am 80, and don't have a lot of energy left in this old bod, so even though I feel great, I am held back by age, or the effects of other problems like PAD and GERD. But definitely not by CML. My advice to anyone, even you youngsters, if your present drug is working and you can conquer the side effects, sit back and enjoy your life, and thank the Lord you have a disease that can be managed. As my friend is prone to say, it's better than a long dirt nap!!! Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: hey00nanc <ncogan@...> Subject: [ ] Re: LLS Statement - Neal Date: Wednesday, October 20, 2010, 3:08 AM  > > Maybe I'm misinformed or just sensitive, but I think that for a lot of us, > we still have a death threat hanging over our heads. For those of us at the > younger end of the age spectrum, it seems that the current prognosis is that > if we don't eventually become resistant to the drugs, we will probably > eventually die from the drugs. I just can't imagine that taking chemo every > day, with all the accompanying side effects, isn't permanently damaging us. ___________________________________ Neal, I don't think you are very well informed by your oncologist.....wasn't he the one who said maybe you needed a BMT!!! (a big false alarm) and the problem that goes along with not having the best information is that you don't have as much confidence either. A specialist like Dr. Druker will tell a newly diagnosed patient, regardless of age, that they most likely have a chronic manageable disease and will die of something else not associated with CML. The bulk of the side effects from the TKIs are not life threatening....and most of the cases of cml patients who have died from the disease were not diagnosed in the chronic phase, or had other medical problems that complicated their treatment. The early Gleevec patient that died of heart issues had pre-existing heart problems. Obviously no one can say for sure what being on one of these drugs for 20-30+ years will do to a person......but what is true, is that when there is a major problem associated with a drug, it shows up earlier rather than later. We now have people who have been on these drugs for 12+ years and there is not increase in deaths associated with the drugs. The same is true for drug resistance, if it does not crop up early, in the first 2-3 years, it is much less likely to happen at all. So, I don't know where your idea of the 'current prognosis' that you will either become resistant to the drugs or die from them comes from??? Personally, I trust the opinions of cml specialists like Dr. Druker and Dr. Talpaz, and they do not express these beliefs. If I had an oncologist who scared me about needing a BMT when it was not true, I would question everything that he told me....and would probably see if I could find a more knowledgeable doctor. Everyone I know who has decided to put their hands in the care of a true cml specialist has never regretted it.....and has felt that the peace of mind was worth the expense. Just my 2-cents, but I am 12 years out, not a great responder to the TKIs but I am not going to live feeling that I have a death threat hanging over me. C. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 Ha! I know I'm not very well informed by my oncologist! Most of what I know is just picked up from the net. (I have seen a specialist, but I can't afford to see him regularly) Thanks for the info. I'm probably wrong, but I still think that the drugs have to cause some sort of damage. I'm supposed to be on Nexium daily, and there was just a report about how being on Nexium long term (previously thought safe) opens people up to life threatening infections. I would not be surprised in the least to find out 15 years from now that TKIs cause permanent damage to one organ or another. Sometimes I like being a bit of a pessimist. The feeling of waiting for the headsman's axe to drop doesn't really bother me that much. I'll probably live long enough to see my kids grow up, get married and have some kids of their own, and that's enough for me. I just hate having my energy and health taken from me this young. I hate coming home from work too tired to play with the kids. I hate getting in trouble at work because I keep forgetting things. I hate that I start projects on good days and then can't find the energy to finish them. That is why I hope they find a real cure, or even just a TKI that doesn't have side effects. [ ] Re: LLS Statement - Neal > > Maybe I'm misinformed or just sensitive, but I think that for a lot of us, > we still have a death threat hanging over our heads. For those of us at the > younger end of the age spectrum, it seems that the current prognosis is that > if we don't eventually become resistant to the drugs, we will probably > eventually die from the drugs. I just can't imagine that taking chemo every > day, with all the accompanying side effects, isn't permanently damaging us. ___________________________________ Neal, I don't think you are very well informed by your oncologist.....wasn't he the one who said maybe you needed a BMT!!! (a big false alarm) and the problem that goes along with not having the best information is that you don't have as much confidence either. A specialist like Dr. Druker will tell a newly diagnosed patient, regardless of age, that they most likely have a chronic manageable disease and will die of something else not associated with CML. The bulk of the side effects from the TKIs are not life threatening....and most of the cases of cml patients who have died from the disease were not diagnosed in the chronic phase, or had other medical problems that complicated their treatment. The early Gleevec patient that died of heart issues had pre-existing heart problems. Obviously no one can say for sure what being on one of these drugs for 20-30+ years will do to a person......but what is true, is that when there is a major problem associated with a drug, it shows up earlier rather than later. We now have people who have been on these drugs for 12+ years and there is not increase in deaths associated with the drugs. The same is true for drug resistance, if it does not crop up early, in the first 2-3 years, it is much less likely to happen at all. So, I don't know where your idea of the 'current prognosis' that you will either become resistant to the drugs or die from them comes from??? Personally, I trust the opinions of cml specialists like Dr. Druker and Dr. Talpaz, and they do not express these beliefs. If I had an oncologist who scared me about needing a BMT when it was not true, I would question everything that he told me....and would probably see if I could find a more knowledgeable doctor. Everyone I know who has decided to put their hands in the care of a true cml specialist has never regretted it.....and has felt that the peace of mind was worth the expense. Just my 2-cents, but I am 12 years out, not a great responder to the TKIs but I am not going to live feeling that I have a death threat hanging over me. C. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 > > Ha! I know I'm not very well informed by my oncologist! Most of what I know > is just picked up from the net. (I have seen a specialist, but I can't > afford to see him regularly) ____________________________________ Hi Neal, The specialist you saw was a BMT specialist, wasn't it???? that is a different story. You want to see someone who does NOT expect you to need a BMT and that's the way he treats you. You mentioned before the possibility of seeing Dr. Shah in San Francisco. You do not see a specialist that often, maybe just every 6 months. You do all your lab work locally and it is faxed to the specialist. The specialist is the one making the treatment decisions, calling the shots......and it is someone you can have great confidence in. For most people, that is worth the price of admission. You see your local oncologist for day to day issues. But your local onc. has to be someone who does not have a huge ego and is willing to have someone more knowledgeable being in charge of your care. I see Dr. Druker every 6 months, I have blood tests regularly at home and I get a pcr every 3 months (twice a year drawn locally). BUT if any decison needs to be made, Dr. Druker is my 'real' oncologist. (scroll down for additional response) ________________________________________________ > Thanks for the info. I'm probably wrong, but I still think that the drugs > have to cause some sort of damage. I'm supposed to be on Nexium daily, and > there was just a report about how being on Nexium long term (previously > thought safe) opens people up to life threatening infections. I would not be > surprised in the least to find out 15 years from now that TKIs cause > permanent damage to one organ or another. ________________________________________ There are many doctors (especially naturopaths) that say that no one should be on Nexium.....having stomach acid is normal, and there are other ways of dealing with it. I think you are now on Sprycel....and I think there have been reports about how Nexium (that category of drugs) can interfere with the absorption and effectiveness of Sprycel, because it needs an acid environment in the stomach for absorption. (Maybe Lottie or someone else can dig up some of those abstracts). Because we are regularly monitoring our full blood chemistry, sometimes once a month or even more, we are very on top of the functioning of our other organs (liver, pancreas is those tests are added as they are for Tasigna). You can easily see when anything is getting out of line and make some adjustments. Because we are monitored so regularly, I think we are actually safer than the 'average' adult with minimal medical care, who things sneek up on. _________________________________________________ > Sometimes I like being a bit of a pessimist. The feeling of waiting for the > headsman's axe to drop doesn't really bother me that much. ____________________________________ Oh sorry, I thought you seemed stressed by being so pessimistic about your drug and your future.....but maybe this is where you like to be and function best??? I prefer being an optimist and will take a half-full glass anytime. ________________________________________ I just hate having my energy and health > taken from me this young. I hate coming home from work too tired to play > with the kids. I hate getting in trouble at work because I keep forgetting > things. I hate that I start projects on good days and then can't find the > energy to finish them. That is why I hope they find a real cure, or even > just a TKI that doesn't have side effects. ______________________________________________ Now, these are legitimate concerns and gripes about having cml and being on a TKI. You just adjust your life to the extent you are able. I think about all the other things I would rather NOT have medically and just accept having cml (it is what it is). No one was promised a long life with no health issues and there have been many worse off than you (brain cancer as a young adult, acute leukemia as a young adult and dying). As long as you feel sorry for yourself, you hold yourself back. You can think of ways to not forget stuff at work (what do you think the early alzheimer's patient who is still working does?). and energy for your kids....maybe you walk in the house, go to the bedroom, take a 20 min nap (or a walk around the block) and get refreshed. Also, one other comment in your previous post, you mentioned something about being on the young end of the age spectrum for dx. Well I am 63, was dx at almost 51........but my Dad lived to 94 and passed away recently and my Mom is 90. So I still want and expect to have many many more years, like 30........so I will also be on these drugs for a long time also........but if you had personally experienced all the cml changes in the last decade, you might be more hopeful that there will be a cure, or a better drug for you in the future. We always used to say that all we needed was a drug to keep us alive until the next better drug (or a cure) came along. When you decide that you want to get off the 'worry train', then you might consider a consult with Dr. Shah and put him in charge of your care. The real cml specialists are all optimistic about this disease. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2010 Report Share Posted October 20, 2010 He is a BMT specialist, but he wasn't the one who thought I was going to need a BMT. It was my regular onc who freaked us out. The specialist was going to type me and my sisters if the results of my BMB were bad (and they weren't), but only as a precaution. He was optimistic, but my wife and I were still sort of freaked out, since we thought he might be just be playing it down, which I guess he wasn't. Anyway, I certainly am interested in seeing Dr Shah, but funds are limited for the moment. I seem to be responding well to Sprycel, so there isn't a rush. As for the optimist/pessimist thing - I just need to let off steam sometimes. Sure things could be worse, but it still sucks. Sure CML used to be a death sentence, but it still sucks. I don't see what's wrong with saying that sometimes. We don't need to always out on a happy face and take it in stride. Saying that doesn't mean I'm moping around feeling sorry for myself all the time. I was dx at 28 and am now 30. Two kids under 3, and another on the way. I didn't say that I wasn't hopeful for a cure. I said that what we have now is not a cure by any means. I don't think Sprycel can keep me alive until I'm 90, and even if it could, I would willingly die at 60 if I could live a normal life until then. I know a good many tricks to dealing with symptoms, but they all just slightly mitigate. An Alzheimer's patient couldn't do my job, no matter what steps they took. My brain has to be a library, and it doesn't always work that way anymore, so I just have to take some heat when I screw up something. I'd go on SSI if I could support my family off of it. [ ] Re: LLS Statement - Neal > > Ha! I know I'm not very well informed by my oncologist! Most of what I know > is just picked up from the net. (I have seen a specialist, but I can't > afford to see him regularly) ____________________________________ Hi Neal, The specialist you saw was a BMT specialist, wasn't it???? that is a different story. You want to see someone who does NOT expect you to need a BMT and that's the way he treats you. You mentioned before the possibility of seeing Dr. Shah in San Francisco. You do not see a specialist that often, maybe just every 6 months. You do all your lab work locally and it is faxed to the specialist. The specialist is the one making the treatment decisions, calling the shots......and it is someone you can have great confidence in. For most people, that is worth the price of admission. You see your local oncologist for day to day issues. But your local onc. has to be someone who does not have a huge ego and is willing to have someone more knowledgeable being in charge of your care. I see Dr. Druker every 6 months, I have blood tests regularly at home and I get a pcr every 3 months (twice a year drawn locally). BUT if any decison needs to be made, Dr. Druker is my 'real' oncologist. (scroll down for additional response) ________________________________________________ > Thanks for the info. I'm probably wrong, but I still think that the drugs > have to cause some sort of damage. I'm supposed to be on Nexium daily, and > there was just a report about how being on Nexium long term (previously > thought safe) opens people up to life threatening infections. I would not be > surprised in the least to find out 15 years from now that TKIs cause > permanent damage to one organ or another. ________________________________________ There are many doctors (especially naturopaths) that say that no one should be on Nexium.....having stomach acid is normal, and there are other ways of dealing with it. I think you are now on Sprycel....and I think there have been reports about how Nexium (that category of drugs) can interfere with the absorption and effectiveness of Sprycel, because it needs an acid environment in the stomach for absorption. (Maybe Lottie or someone else can dig up some of those abstracts). Because we are regularly monitoring our full blood chemistry, sometimes once a month or even more, we are very on top of the functioning of our other organs (liver, pancreas is those tests are added as they are for Tasigna). You can easily see when anything is getting out of line and make some adjustments. Because we are monitored so regularly, I think we are actually safer than the 'average' adult with minimal medical care, who things sneek up on. _________________________________________________ > Sometimes I like being a bit of a pessimist. The feeling of waiting for the > headsman's axe to drop doesn't really bother me that much. ____________________________________ Oh sorry, I thought you seemed stressed by being so pessimistic about your drug and your future.....but maybe this is where you like to be and function best??? I prefer being an optimist and will take a half-full glass anytime. ________________________________________ I just hate having my energy and health > taken from me this young. I hate coming home from work too tired to play > with the kids. I hate getting in trouble at work because I keep forgetting > things. I hate that I start projects on good days and then can't find the > energy to finish them. That is why I hope they find a real cure, or even > just a TKI that doesn't have side effects. ______________________________________________ Now, these are legitimate concerns and gripes about having cml and being on a TKI. You just adjust your life to the extent you are able. I think about all the other things I would rather NOT have medically and just accept having cml (it is what it is). No one was promised a long life with no health issues and there have been many worse off than you (brain cancer as a young adult, acute leukemia as a young adult and dying). As long as you feel sorry for yourself, you hold yourself back. You can think of ways to not forget stuff at work (what do you think the early alzheimer's patient who is still working does?). and energy for your kids....maybe you walk in the house, go to the bedroom, take a 20 min nap (or a walk around the block) and get refreshed. Also, one other comment in your previous post, you mentioned something about being on the young end of the age spectrum for dx. Well I am 63, was dx at almost 51........but my Dad lived to 94 and passed away recently and my Mom is 90. So I still want and expect to have many many more years, like 30........so I will also be on these drugs for a long time also........but if you had personally experienced all the cml changes in the last decade, you might be more hopeful that there will be a cure, or a better drug for you in the future. We always used to say that all we needed was a drug to keep us alive until the next better drug (or a cure) came along. When you decide that you want to get off the 'worry train', then you might consider a consult with Dr. Shah and put him in charge of your care. The real cml specialists are all optimistic about this disease. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 Hi Neal: First let me say that I have been on Nexium 40mg. once a day for 11 years now. I had to start taking it after I started my Gleevec due to GERD which I developed from the Gleevec. I have not had one single problem from the Nexium, and it has definitely controlled my horrible heartburn. When I started on Gleevec, it did not take long to develop the heartburn. I went and had a Endoscopy to check out the esophagus, and I was already started on the Nexium before the procedure. The doctor told me he could see that if I had not started on the Nexium that I would have ended up with Esophagus Problems which could have lead to cancer of the Esophagus. Not many people survive esophageal cancer, and I did not want to take that chance.     I have been on the Gleevec since Oct of 2000, and was diagnosed with CML in 1998. I was not a candidate for a BMT, and I feel that the Gleevec has kept me alive all these years. I do understand how you feel about any type of Chemo possibly giving you problems down the road. When I was diagnosed on Christmas of 1998, I thought this is it. Better enjoy this holiday with my family because I will never see another, and when nothing worked for me Gleevec was my only choice. I plan on enjoying Christmas #12 in 2 months, and God Willing many more to come.    None of us are promised a tomorrow. If not CML, something else could kill us. The way the TKI's are working for so many patients, they probably will die from something else and not CML or their treatments. You mentioned affording your appointments with the Specialist. I am down to just every 6 months office visit now, but regular blood tests to monitor how I am doing. Maybe you have insurance issues with them not paying for certain things.     Does not sound like your Oncologist has really done their job to keep you up on everything like you said. I wish you well with whatever your doing. From: Neal <nwatson@...> Subject: RE: [ ] Re: LLS Statement - Neal Date: Wednesday, October 20, 2010, 1:02 PM  Ha! I know I'm not very well informed by my oncologist! Most of what I know is just picked up from the net. (I have seen a specialist, but I can't afford to see him regularly) Thanks for the info. I'm probably wrong, but I still think that the drugs have to cause some sort of damage. I'm supposed to be on Nexium daily, and there was just a report about how being on Nexium long term (previously thought safe) opens people up to life threatening infections. I would not be surprised in the least to find out 15 years from now that TKIs cause permanent damage to one organ or another. Sometimes I like being a bit of a pessimist. The feeling of waiting for the headsman's axe to drop doesn't really bother me that much. I'll probably live long enough to see my kids grow up, get married and have some kids of their own, and that's enough for me. I just hate having my energy and health taken from me this young. I hate coming home from work too tired to play with the kids. I hate getting in trouble at work because I keep forgetting things. I hate that I start projects on good days and then can't find the energy to finish them. That is why I hope they find a real cure, or even just a TKI that doesn't have side effects. [ ] Re: LLS Statement - Neal > > Maybe I'm misinformed or just sensitive, but I think that for a lot of us, > we still have a death threat hanging over our heads. For those of us at the > younger end of the age spectrum, it seems that the current prognosis is that > if we don't eventually become resistant to the drugs, we will probably > eventually die from the drugs. I just can't imagine that taking chemo every > day, with all the accompanying side effects, isn't permanently damaging us. ___________________________________ Neal, I don't think you are very well informed by your oncologist.....wasn't he the one who said maybe you needed a BMT!!! (a big false alarm) and the problem that goes along with not having the best information is that you don't have as much confidence either. A specialist like Dr. Druker will tell a newly diagnosed patient, regardless of age, that they most likely have a chronic manageable disease and will die of something else not associated with CML. The bulk of the side effects from the TKIs are not life threatening....and most of the cases of cml patients who have died from the disease were not diagnosed in the chronic phase, or had other medical problems that complicated their treatment. The early Gleevec patient that died of heart issues had pre-existing heart problems. Obviously no one can say for sure what being on one of these drugs for 20-30+ years will do to a person......but what is true, is that when there is a major problem associated with a drug, it shows up earlier rather than later. We now have people who have been on these drugs for 12+ years and there is not increase in deaths associated with the drugs. The same is true for drug resistance, if it does not crop up early, in the first 2-3 years, it is much less likely to happen at all. So, I don't know where your idea of the 'current prognosis' that you will either become resistant to the drugs or die from them comes from??? Personally, I trust the opinions of cml specialists like Dr. Druker and Dr. Talpaz, and they do not express these beliefs. If I had an oncologist who scared me about needing a BMT when it was not true, I would question everything that he told me....and would probably see if I could find a more knowledgeable doctor. Everyone I know who has decided to put their hands in the care of a true cml specialist has never regretted it.....and has felt that the peace of mind was worth the expense. Just my 2-cents, but I am 12 years out, not a great responder to the TKIs but I am not going to live feeling that I have a death threat hanging over me. C. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 > > He is a BMT specialist, but he wasn't the one who thought I was going to > need a BMT. It was my regular onc who freaked us out. The specialist was > going to type me and my sisters if the results of my BMB were bad (and they > weren't), but only as a precaution. He was optimistic, but my wife and I > were still sort of freaked out, since we thought he might be just be playing > it down, which I guess he wasn't. ____________________________________________ Hi Neal, I was only trying to offer you some helpful suggestions. I did remember that it was your reg. onc that said you likely needed a BMT, and then sent you to a BMT specialist. The point with a BMT specialist is that that is a whole other approach to treating CML and they are not well versed in the drug treatment options, with experience following patients on medications for years, etc. It is not a bad idea, even now, to have your sisters typed if your insurance will cover it....it is good to know ahead if you have a match in case one is needed. They may do this less often now because drug treatment is so successful for most CMLers. ____________________________________________ > Anyway, I certainly am interested in seeing Dr Shah, but funds are limited > for the moment. I seem to be responding well to Sprycel, so there isn't a > rush. _______________________________________________ If you do find that having CML is really stressful for you and/or your wife, seeing the specialist usually puts all that to rest...so many think it is worth the price. But, as your wrote, not a necessity. ________________________________________________ > As for the optimist/pessimist thing - I just need to let off steam > sometimes. Sure things could be worse, but it still sucks. Sure CML used to > be a death sentence, but it still sucks. I don't see what's wrong with > saying that sometimes. We don't need to always out on a happy face and take > it in stride. Saying that doesn't mean I'm moping around feeling sorry for > myself all the time. _______________________________________________ I am in Bobby's camp and don't really think about CML much at all, and certainly don't spend much time worrying about it. When I consulted with Dr. Talpaz years ago, while waiting for a 2nd generation drug....he told me: " you don't have to worry, when you need a new drug it will be there " ...... I do believe that how you choose to see your life situation is a choice......so being a pessimist is a choice, and if it suits you and does not bother you, then you have every right to make that choice. But I will tell you (from my medical background) that if you worry about CML and stress over, that in itself is a significant health issue and causes other problems. The stress hormone is cortisol and it causes damage to your body....so there is a health benefit to being hopeful (an optimist). ______________________________________________ > I was dx at 28 and am now 30. Two kids under 3, and another on the way. I > didn't say that I wasn't hopeful for a cure. I said that what we have now is > not a cure by any means. I don't think Sprycel can keep me alive until I'm > 90, and even if it could, I would willingly die at 60 if I could live a > normal life until then. _________________________________________ I don't think anyone has the expectation that you will still be on Sprycel at age 90....if you look at the progress with CML and other cancers made in the last decade, you have to expect that continued progress will be made. ________________________________________ > I know a good many tricks to dealing with symptoms, but they all just > slightly mitigate. An Alzheimer's patient couldn't do my job, no matter what > steps they took. My brain has to be a library, and it doesn't always work > that way anymore, so I just have to take some heat when I screw up > something. I'd go on SSI if I could support my family off of it. _________________________________________________ I don't know what you do for a living, but maybe you could also start to consider other options in your field, that are not so detailed oriented? At age 30, you are unlikely to have this same job for the rest of your working life anyway (per the statistics). As a physical therapist, my brain also had to store information like a computer, keeping the details of many patients clear in my mind. Sometimes now I can't even remember how to spell a simple work, so I keep a dictionary handy or substitute another word. Anyway, nice chatting with you. Sometimes I just try to show a person that there is another way of viewing things, that they can consider if they want to. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 Hi, I have been on Prevacid since it came on the market. I have had acid reflux for over 40 years. I always say I have no side effects from Ariad, and that is true, but the acid reflux is more prevalent now than it used to be. But I see no bad results from taking Prevacid, other than sometimes it does not seem to help. When I had my first attack of heart burn I did not know what it was and thought it was a heart attack! My friend said to eat something quickly, and I ate soda crackers and the pain went away. So for years I always had soda crackers at hand, in the compartment of the car, by my bed, I never left home without them! I finally went to see a Dr. and he ordered an upper GI and said there was nothing wrong. A few years later I had another, same thing, nothing wrong. On the third one they also did an ultra sound, and the technician said, aha, you have a hiatal hernia. I never heard of that, and to this day don't know how come one of those drs didn't know I had heart burn? One night a couple of years ago I had such sever chest pains I didn't know if it was heart burn or a heart attack. So I took a tums for the tummy, I valium for the nerves, I took the phone with me and went to bed, telling myself if it gets worse, I will call 911. Well, the pain finally went away and it was a good thing it wasn't a heart attack, because I discovered I did not have the phone, I had the TV remote!! We're all gonna die of something, no sense in worrying about it, nothing is going to change that fact. What of and when is something else. I had an uncle that was told by his doctor his heart was bad, but don't worry, he would most likely die in his sleep. Uncle Carl never went to bed again, he slept in his chair, and that is where they found him, in his chair, he had died in his sleep. But I would bet most of us with CML are not going to die of it, we will die of something else. I'm going on 16 years of meds for it and so far have no complications. Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: hey00nanc <ncogan@...> Subject: [ ] Re: LLS Statement - Neal Date: Thursday, October 21, 2010, 3:03 AM  > > He is a BMT specialist, but he wasn't the one who thought I was going to > need a BMT. It was my regular onc who freaked us out. The specialist was > going to type me and my sisters if the results of my BMB were bad (and they > weren't), but only as a precaution. He was optimistic, but my wife and I > were still sort of freaked out, since we thought he might be just be playing > it down, which I guess he wasn't. ____________________________________________ Hi Neal, I was only trying to offer you some helpful suggestions. I did remember that it was your reg. onc that said you likely needed a BMT, and then sent you to a BMT specialist. The point with a BMT specialist is that that is a whole other approach to treating CML and they are not well versed in the drug treatment options, with experience following patients on medications for years, etc. It is not a bad idea, even now, to have your sisters typed if your insurance will cover it....it is good to know ahead if you have a match in case one is needed. They may do this less often now because drug treatment is so successful for most CMLers. ____________________________________________ > Anyway, I certainly am interested in seeing Dr Shah, but funds are limited > for the moment. I seem to be responding well to Sprycel, so there isn't a > rush. _______________________________________________ If you do find that having CML is really stressful for you and/or your wife, seeing the specialist usually puts all that to rest...so many think it is worth the price. But, as your wrote, not a necessity. ________________________________________________ > As for the optimist/pessimist thing - I just need to let off steam > sometimes. Sure things could be worse, but it still sucks. Sure CML used to > be a death sentence, but it still sucks. I don't see what's wrong with > saying that sometimes. We don't need to always out on a happy face and take > it in stride. Saying that doesn't mean I'm moping around feeling sorry for > myself all the time. _______________________________________________ I am in Bobby's camp and don't really think about CML much at all, and certainly don't spend much time worrying about it. When I consulted with Dr. Talpaz years ago, while waiting for a 2nd generation drug....he told me: " you don't have to worry, when you need a new drug it will be there " ...... I do believe that how you choose to see your life situation is a choice......so being a pessimist is a choice, and if it suits you and does not bother you, then you have every right to make that choice. But I will tell you (from my medical background) that if you worry about CML and stress over, that in itself is a significant health issue and causes other problems. The stress hormone is cortisol and it causes damage to your body....so there is a health benefit to being hopeful (an optimist). ______________________________________________ > I was dx at 28 and am now 30. Two kids under 3, and another on the way. I > didn't say that I wasn't hopeful for a cure. I said that what we have now is > not a cure by any means. I don't think Sprycel can keep me alive until I'm > 90, and even if it could, I would willingly die at 60 if I could live a > normal life until then. _________________________________________ I don't think anyone has the expectation that you will still be on Sprycel at age 90....if you look at the progress with CML and other cancers made in the last decade, you have to expect that continued progress will be made. ________________________________________ > I know a good many tricks to dealing with symptoms, but they all just > slightly mitigate. An Alzheimer's patient couldn't do my job, no matter what > steps they took. My brain has to be a library, and it doesn't always work > that way anymore, so I just have to take some heat when I screw up > something. I'd go on SSI if I could support my family off of it. _________________________________________________ I don't know what you do for a living, but maybe you could also start to consider other options in your field, that are not so detailed oriented? At age 30, you are unlikely to have this same job for the rest of your working life anyway (per the statistics). As a physical therapist, my brain also had to store information like a computer, keeping the details of many patients clear in my mind. Sometimes now I can't even remember how to spell a simple work, so I keep a dictionary handy or substitute another word. Anyway, nice chatting with you. Sometimes I just try to show a person that there is another way of viewing things, that they can consider if they want to. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 Do the proton pump inhibitors impede Sprycel? ________________________________ From: ROBERTA DOYLE <rcd1929@...> Sent: Thu, October 21, 2010 7:14:59 AM Subject: Re: [ ] Re: LLS Statement - Neal Hi, I have been on Prevacid since it came on the market. I have had acid reflux for over 40 years. I always say I have no side effects from Ariad, and that is true, but the acid reflux is more prevalent now than it used to be. But I see no bad results from taking Prevacid, other than sometimes it does not seem to help. When I had my first attack of heart burn I did not know what it was and thought it was a heart attack! My friend said to eat something quickly, and I ate soda crackers and the pain went away. So for years I always had soda crackers at hand, in the compartment of the car, by my bed, I never left home without them! I finally went to see a Dr. and he ordered an upper GI and said there was nothing wrong. A few years later I had another, same thing, nothing wrong. On the third one they also did an ultra sound, and the technician said, aha, you have a hiatal hernia. I never heard of that, and to this day don't know how come one of those drs didn't know I had heart burn? One night a couple of years ago I had such sever chest pains I didn't know if it was heart burn or a heart attack. So I took a tums for the tummy, I valium for the nerves, I took the phone with me and went to bed, telling myself if it gets worse, I will call 911. Well, the pain finally went away and it was a good thing it wasn't a heart attack, because I discovered I did not have the phone, I had the TV remote!! We're all gonna die of something, no sense in worrying about it, nothing is going to change that fact. What of and when is something else. I had an uncle that was told by his doctor his heart was bad, but don't worry, he would most likely die in his sleep. Uncle Carl never went to bed again, he slept in his chair, and that is where they found him, in his chair, he had died in his sleep. But I would bet most of us with CML are not going to die of it, we will die of something else. I'm going on 16 years of meds for it and so far have no complications. Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: hey00nanc <ncogan@...> Subject: [ ] Re: LLS Statement - Neal Date: Thursday, October 21, 2010, 3:03 AM > > He is a BMT specialist, but he wasn't the one who thought I was going to > need a BMT. It was my regular onc who freaked us out. The specialist was > going to type me and my sisters if the results of my BMB were bad (and they > weren't), but only as a precaution. He was optimistic, but my wife and I > were still sort of freaked out, since we thought he might be just be playing > it down, which I guess he wasn't. ____________________________________________ Hi Neal, I was only trying to offer you some helpful suggestions. I did remember that it was your reg. onc that said you likely needed a BMT, and then sent you to a BMT specialist. The point with a BMT specialist is that that is a whole other approach to treating CML and they are not well versed in the drug treatment options, with experience following patients on medications for years, etc. It is not a bad idea, even now, to have your sisters typed if your insurance will cover it....it is good to know ahead if you have a match in case one is needed. They may do this less often now because drug treatment is so successful for most CMLers. ____________________________________________ > Anyway, I certainly am interested in seeing Dr Shah, but funds are limited > for the moment. I seem to be responding well to Sprycel, so there isn't a > rush. _______________________________________________ If you do find that having CML is really stressful for you and/or your wife, seeing the specialist usually puts all that to rest...so many think it is worth the price. But, as your wrote, not a necessity. ________________________________________________ > As for the optimist/pessimist thing - I just need to let off steam > sometimes. Sure things could be worse, but it still sucks. Sure CML used to > be a death sentence, but it still sucks. I don't see what's wrong with > saying that sometimes. We don't need to always out on a happy face and take > it in stride. Saying that doesn't mean I'm moping around feeling sorry for > myself all the time. _______________________________________________ I am in Bobby's camp and don't really think about CML much at all, and certainly don't spend much time worrying about it. When I consulted with Dr. Talpaz years ago, while waiting for a 2nd generation drug....he told me: " you don't have to worry, when you need a new drug it will be there " ...... I do believe that how you choose to see your life situation is a choice......so being a pessimist is a choice, and if it suits you and does not bother you, then you have every right to make that choice. But I will tell you (from my medical background) that if you worry about CML and stress over, that in itself is a significant health issue and causes other problems. The stress hormone is cortisol and it causes damage to your body....so there is a health benefit to being hopeful (an optimist). ______________________________________________ > I was dx at 28 and am now 30. Two kids under 3, and another on the way. I > didn't say that I wasn't hopeful for a cure. I said that what we have now is > not a cure by any means. I don't think Sprycel can keep me alive until I'm > 90, and even if it could, I would willingly die at 60 if I could live a > normal life until then. _________________________________________ I don't think anyone has the expectation that you will still be on Sprycel at age 90....if you look at the progress with CML and other cancers made in the last decade, you have to expect that continued progress will be made. ________________________________________ > I know a good many tricks to dealing with symptoms, but they all just > slightly mitigate. An Alzheimer's patient couldn't do my job, no matter what > steps they took. My brain has to be a library, and it doesn't always work > that way anymore, so I just have to take some heat when I screw up > something. I'd go on SSI if I could support my family off of it. _________________________________________________ I don't know what you do for a living, but maybe you could also start to consider other options in your field, that are not so detailed oriented? At age 30, you are unlikely to have this same job for the rest of your working life anyway (per the statistics). As a physical therapist, my brain also had to store information like a computer, keeping the details of many patients clear in my mind. Sometimes now I can't even remember how to spell a simple work, so I keep a dictionary handy or substitute another word. Anyway, nice chatting with you. Sometimes I just try to show a person that there is another way of viewing things, that they can consider if they want to. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 I think as long as you don't take them within 2 hours it is ok. I took them with all of my drugs, never had a problem. a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: hey00nanc <ncogan@...> Subject: [ ] Re: LLS Statement - Neal Date: Thursday, October 21, 2010, 3:03 AM > > He is a BMT specialist, but he wasn't the one who thought I was going to > need a BMT. It was my regular onc who freaked us out. The specialist was > going to type me and my sisters if the results of my BMB were bad (and they > weren't), but only as a precaution. He was optimistic, but my wife and I > were still sort of freaked out, since we thought he might be just be playing > it down, which I guess he wasn't. ____________________________________________ Hi Neal, I was only trying to offer you some helpful suggestions. I did remember that it was your reg. onc that said you likely needed a BMT, and then sent you to a BMT specialist. The point with a BMT specialist is that that is a whole other approach to treating CML and they are not well versed in the drug treatment options, with experience following patients on medications for years, etc. It is not a bad idea, even now, to have your sisters typed if your insurance will cover it....it is good to know ahead if you have a match in case one is needed. They may do this less often now because drug treatment is so successful for most CMLers. ____________________________________________ > Anyway, I certainly am interested in seeing Dr Shah, but funds are limited > for the moment. I seem to be responding well to Sprycel, so there isn't a > rush. _______________________________________________ If you do find that having CML is really stressful for you and/or your wife, seeing the specialist usually puts all that to rest...so many think it is worth the price. But, as your wrote, not a necessity. ________________________________________________ > As for the optimist/pessimist thing - I just need to let off steam > sometimes. Sure things could be worse, but it still sucks. Sure CML used to > be a death sentence, but it still sucks. I don't see what's wrong with > saying that sometimes. We don't need to always out on a happy face and take > it in stride. Saying that doesn't mean I'm moping around feeling sorry for > myself all the time. _______________________________________________ I am in Bobby's camp and don't really think about CML much at all, and certainly don't spend much time worrying about it. When I consulted with Dr. Talpaz years ago, while waiting for a 2nd generation drug....he told me: " you don't have to worry, when you need a new drug it will be there " ...... I do believe that how you choose to see your life situation is a choice......so being a pessimist is a choice, and if it suits you and does not bother you, then you have every right to make that choice. But I will tell you (from my medical background) that if you worry about CML and stress over, that in itself is a significant health issue and causes other problems. The stress hormone is cortisol and it causes damage to your body....so there is a health benefit to being hopeful (an optimist). ______________________________________________ > I was dx at 28 and am now 30. Two kids under 3, and another on the way. I > didn't say that I wasn't hopeful for a cure. I said that what we have now is > not a cure by any means. I don't think Sprycel can keep me alive until I'm > 90, and even if it could, I would willingly die at 60 if I could live a > normal life until then. _________________________________________ I don't think anyone has the expectation that you will still be on Sprycel at age 90....if you look at the progress with CML and other cancers made in the last decade, you have to expect that continued progress will be made. ________________________________________ > I know a good many tricks to dealing with symptoms, but they all just > slightly mitigate. An Alzheimer's patient couldn't do my job, no matter what > steps they took. My brain has to be a library, and it doesn't always work > that way anymore, so I just have to take some heat when I screw up > something. I'd go on SSI if I could support my family off of it. _________________________________________________ I don't know what you do for a living, but maybe you could also start to consider other options in your field, that are not so detailed oriented? At age 30, you are unlikely to have this same job for the rest of your working life anyway (per the statistics). As a physical therapist, my brain also had to store information like a computer, keeping the details of many patients clear in my mind. Sometimes now I can't even remember how to spell a simple work, so I keep a dictionary handy or substitute another word. Anyway, nice chatting with you. Sometimes I just try to show a person that there is another way of viewing things, that they can consider if they want to. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 Actually, he was very knowledgeable about the drug treatments. He goes to the conferences, and was able to give us very good info on Sprycel - especially as it related to my wife being preggers. I work as a Civil Engineer at a consulting firm. One of those few fields that people do not fall in and out of, and not the time to go job searching. And I am sure as hell not going back to school. LOL. Anyway, we do have a plan concerning that. I am sticking it out until we get things paid down. Then we will buy a quarter section somewhere, build our farm and retire early onto it. As soon as we can make it on SSI, we are doing it. On the rest, maybe we should bring this back in focus: My initial comments were about whether it is accurate to call CML " essentially cured " . It's not about whether I think I'm going to die of CML, or that I have a constant negative attitude. I think that the current lines of drugs are not cures. I think they are keeping us alive at the cost of quality of life, and I think possibly our long term health. I don't think I'm going to have negative health consequences for believing that. I never said I worried about any of this. I'm sorry, but I think the requirement of a smiley face attitude is BS. There is no reason I should have to defend saying that having CML sucks, or that being on TKIs sucks. It is not going to help me, or make me healthier, thinking about how it could be worse, or what have you. Modern studies show that so called positive attitudes do not have any statistical affect on health. When I was first dealing with this new life, I listened to an interview of Barbara Ehrenreich on Talk of the Nation, about this very subject. It was very refreshing to hear someone say exactly what I think - you do not need to be happy about it. Worry and stress doesn't factor into it. Most days I don't even have time to worry about it, even if I wanted to. Plus, the idea does not worry me. I don't think I'm going to die anytime soon, and being a religious guy, I would prefer to die of CML than just out of the blue. I like the idea of having time to say goodbye, give my final confession and receive my final communion. So, no, the idea does not stress me out. [ ] Re: LLS Statement - Neal > > He is a BMT specialist, but he wasn't the one who thought I was going to > need a BMT. It was my regular onc who freaked us out. The specialist was > going to type me and my sisters if the results of my BMB were bad (and they > weren't), but only as a precaution. He was optimistic, but my wife and I > were still sort of freaked out, since we thought he might be just be playing > it down, which I guess he wasn't. ____________________________________________ Hi Neal, I was only trying to offer you some helpful suggestions. I did remember that it was your reg. onc that said you likely needed a BMT, and then sent you to a BMT specialist. The point with a BMT specialist is that that is a whole other approach to treating CML and they are not well versed in the drug treatment options, with experience following patients on medications for years, etc. It is not a bad idea, even now, to have your sisters typed if your insurance will cover it....it is good to know ahead if you have a match in case one is needed. They may do this less often now because drug treatment is so successful for most CMLers. ____________________________________________ > Anyway, I certainly am interested in seeing Dr Shah, but funds are limited > for the moment. I seem to be responding well to Sprycel, so there isn't a > rush. _______________________________________________ If you do find that having CML is really stressful for you and/or your wife, seeing the specialist usually puts all that to rest...so many think it is worth the price. But, as your wrote, not a necessity. ________________________________________________ > As for the optimist/pessimist thing - I just need to let off steam > sometimes. Sure things could be worse, but it still sucks. Sure CML used to > be a death sentence, but it still sucks. I don't see what's wrong with > saying that sometimes. We don't need to always out on a happy face and take > it in stride. Saying that doesn't mean I'm moping around feeling sorry for > myself all the time. _______________________________________________ I am in Bobby's camp and don't really think about CML much at all, and certainly don't spend much time worrying about it. When I consulted with Dr. Talpaz years ago, while waiting for a 2nd generation drug....he told me: " you don't have to worry, when you need a new drug it will be there " ...... I do believe that how you choose to see your life situation is a choice......so being a pessimist is a choice, and if it suits you and does not bother you, then you have every right to make that choice. But I will tell you (from my medical background) that if you worry about CML and stress over, that in itself is a significant health issue and causes other problems. The stress hormone is cortisol and it causes damage to your body....so there is a health benefit to being hopeful (an optimist). ______________________________________________ > I was dx at 28 and am now 30. Two kids under 3, and another on the way. I > didn't say that I wasn't hopeful for a cure. I said that what we have now is > not a cure by any means. I don't think Sprycel can keep me alive until I'm > 90, and even if it could, I would willingly die at 60 if I could live a > normal life until then. _________________________________________ I don't think anyone has the expectation that you will still be on Sprycel at age 90....if you look at the progress with CML and other cancers made in the last decade, you have to expect that continued progress will be made. ________________________________________ > I know a good many tricks to dealing with symptoms, but they all just > slightly mitigate. An Alzheimer's patient couldn't do my job, no matter what > steps they took. My brain has to be a library, and it doesn't always work > that way anymore, so I just have to take some heat when I screw up > something. I'd go on SSI if I could support my family off of it. _________________________________________________ I don't know what you do for a living, but maybe you could also start to consider other options in your field, that are not so detailed oriented? At age 30, you are unlikely to have this same job for the rest of your working life anyway (per the statistics). As a physical therapist, my brain also had to store information like a computer, keeping the details of many patients clear in my mind. Sometimes now I can't even remember how to spell a simple work, so I keep a dictionary handy or substitute another word. Anyway, nice chatting with you. Sometimes I just try to show a person that there is another way of viewing things, that they can consider if they want to. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 Neal I have a son who got diabetes when he was 16. He is now 40 and has an insulin pump. He is doing very very well with no health problems at all (as far as I know) CML is very much like diabetes in the treatment! It is a controlled disease and I think we will live a very long time. I feel very fortunate! Good luck to u! Are u going to be a new daddy? Sharon Sent via BlackBerry by AT & T [ ] Re: LLS Statement - Neal > > He is a BMT specialist, but he wasn't the one who thought I was going to > need a BMT. It was my regular onc who freaked us out. The specialist was > going to type me and my sisters if the results of my BMB were bad (and they > weren't), but only as a precaution. He was optimistic, but my wife and I > were still sort of freaked out, since we thought he might be just be playing > it down, which I guess he wasn't. ____________________________________________ Hi Neal, I was only trying to offer you some helpful suggestions. I did remember that it was your reg. onc that said you likely needed a BMT, and then sent you to a BMT specialist. The point with a BMT specialist is that that is a whole other approach to treating CML and they are not well versed in the drug treatment options, with experience following patients on medications for years, etc. It is not a bad idea, even now, to have your sisters typed if your insurance will cover it....it is good to know ahead if you have a match in case one is needed. They may do this less often now because drug treatment is so successful for most CMLers. ____________________________________________ > Anyway, I certainly am interested in seeing Dr Shah, but funds are limited > for the moment. I seem to be responding well to Sprycel, so there isn't a > rush. _______________________________________________ If you do find that having CML is really stressful for you and/or your wife, seeing the specialist usually puts all that to rest...so many think it is worth the price. But, as your wrote, not a necessity. ________________________________________________ > As for the optimist/pessimist thing - I just need to let off steam > sometimes. Sure things could be worse, but it still sucks. Sure CML used to > be a death sentence, but it still sucks. I don't see what's wrong with > saying that sometimes. We don't need to always out on a happy face and take > it in stride. Saying that doesn't mean I'm moping around feeling sorry for > myself all the time. _______________________________________________ I am in Bobby's camp and don't really think about CML much at all, and certainly don't spend much time worrying about it. When I consulted with Dr. Talpaz years ago, while waiting for a 2nd generation drug....he told me: " you don't have to worry, when you need a new drug it will be there " ...... I do believe that how you choose to see your life situation is a choice......so being a pessimist is a choice, and if it suits you and does not bother you, then you have every right to make that choice. But I will tell you (from my medical background) that if you worry about CML and stress over, that in itself is a significant health issue and causes other problems. The stress hormone is cortisol and it causes damage to your body....so there is a health benefit to being hopeful (an optimist). ______________________________________________ > I was dx at 28 and am now 30. Two kids under 3, and another on the way. I > didn't say that I wasn't hopeful for a cure. I said that what we have now is > not a cure by any means. I don't think Sprycel can keep me alive until I'm > 90, and even if it could, I would willingly die at 60 if I could live a > normal life until then. _________________________________________ I don't think anyone has the expectation that you will still be on Sprycel at age 90....if you look at the progress with CML and other cancers made in the last decade, you have to expect that continued progress will be made. ________________________________________ > I know a good many tricks to dealing with symptoms, but they all just > slightly mitigate. An Alzheimer's patient couldn't do my job, no matter what > steps they took. My brain has to be a library, and it doesn't always work > that way anymore, so I just have to take some heat when I screw up > something. I'd go on SSI if I could support my family off of it. _________________________________________________ I don't know what you do for a living, but maybe you could also start to consider other options in your field, that are not so detailed oriented? At age 30, you are unlikely to have this same job for the rest of your working life anyway (per the statistics). As a physical therapist, my brain also had to store information like a computer, keeping the details of many patients clear in my mind. Sometimes now I can't even remember how to spell a simple work, so I keep a dictionary handy or substitute another word. Anyway, nice chatting with you. Sometimes I just try to show a person that there is another way of viewing things, that they can consider if they want to. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 > On the rest, maybe we should bring this back in focus: My initial comments > were about whether it is accurate to call CML " essentially cured " . It's not > about whether I think I'm going to die of CML, or that I have a constant > negative attitude. > > > > I think that the current lines of drugs are not cures. I think they are > keeping us alive at the cost of quality of life, and I think possibly our > long term health. I don't think I'm going to have negative health > consequences for believing that. _________________________________________ Sorry, I seem to have offended you by offering my point of view, which differs from yours. I don't put on a happy face to deal with CML.....this is just who I genuinely am, and it works well for me! I have most likely dealt with much more than you have CML-wise in 12 years and I still remain optimistic and glad that I have CML and not a really 'fatal' or disabling disease. " Essentially cured " to me means that I am still alive, still functioning well and not a lot to really complain about (yes, some annoying side effects of CML and of meds). 10 years ago, this was a fatal disease and it is NOT anymore for most CML patients....to me, that is 'essentially' cured. It does not mean that you don't have to take medications for it.....it means that you don't die from it. AND like every other topic, there are 2 sides of the coin, and there are many studies that show that attitude and stress level does affect health......not that a positive attitude is going to make you survive a most likely fatal situation, and I was not suggesting that, but that positive attitude does affect general health and lovegevity. No reason for us to share thoughts anymore, we obviously enjoy seeing the world from a different perspective. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 Do I have the experience of being told I have 3-5 years to live? No I do not. I did, however, have a brush with death because I was diagnosed late. I do have to deal with side effects while trying to support my family, engage with my kids and do all the other things I am expected to do. I have to deal with having a body aged well ahead of its time. So on and so forth. You really do not know what I have or haven't dealt with, so don't you dare minimize it. I thought half the reason for having a CML group was so we could " complain " about all the crap we have to go through, without getting all the lame 'it could be worse' and 'turn that frown upside down' comments we hear from everyone else. If you are happy about your situation, then good for you. I guess I'll just go to the corner drug store and complain some more. [ ] Re: LLS Statement - Neal > On the rest, maybe we should bring this back in focus: My initial comments > were about whether it is accurate to call CML " essentially cured " . It's not > about whether I think I'm going to die of CML, or that I have a constant > negative attitude. > > > > I think that the current lines of drugs are not cures. I think they are > keeping us alive at the cost of quality of life, and I think possibly our > long term health. I don't think I'm going to have negative health > consequences for believing that. _________________________________________ Sorry, I seem to have offended you by offering my point of view, which differs from yours. I don't put on a happy face to deal with CML.....this is just who I genuinely am, and it works well for me! I have most likely dealt with much more than you have CML-wise in 12 years and I still remain optimistic and glad that I have CML and not a really 'fatal' or disabling disease. " Essentially cured " to me means that I am still alive, still functioning well and not a lot to really complain about (yes, some annoying side effects of CML and of meds). 10 years ago, this was a fatal disease and it is NOT anymore for most CML patients....to me, that is 'essentially' cured. It does not mean that you don't have to take medications for it.....it means that you don't die from it. AND like every other topic, there are 2 sides of the coin, and there are many studies that show that attitude and stress level does affect health......not that a positive attitude is going to make you survive a most likely fatal situation, and I was not suggesting that, but that positive attitude does affect general health and lovegevity. No reason for us to share thoughts anymore, we obviously enjoy seeing the world from a different perspective. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 Hi Neal, I can sympathize with you and the dilemma you are in having CML, a family to take care of and having to work too. My situation was similar. I was 39, widowed and the mother of 6 children from 6 yrs of age to 15, when I was dx with uterine cancer. The cervical biopsy they did showed the cancer had spread to the uterus, but could not tell if it had gone further. I was fortunate , after having a complete hysterectomy, the problem was gone, it had not metastasized . I have lived another 41 years, raised my 6 children, had 11 grand children and am now into great grand children. That was a long time ago, but the memory of the fear of what will happen to my children is quite vivid even today. I have always found talking about my problems and getting them in the open is a way of healing for me. We can't be here just for the " good " thoughts, and just for progress, we have to be here for each other for all of our trials and tribulations. Vent all you want, if we don't understand, and we are all going through the same things, who else can? Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: Neal <nwatson@...> Subject: RE: [ ] Re: LLS Statement - Neal Date: Thursday, October 21, 2010, 7:09 PM  Do I have the experience of being told I have 3-5 years to live? No I do not. I did, however, have a brush with death because I was diagnosed late. I do have to deal with side effects while trying to support my family, engage with my kids and do all the other things I am expected to do. I have to deal with having a body aged well ahead of its time. So on and so forth. You really do not know what I have or haven't dealt with, so don't you dare minimize it. I thought half the reason for having a CML group was so we could " complain " about all the crap we have to go through, without getting all the lame 'it could be worse' and 'turn that frown upside down' comments we hear from everyone else. If you are happy about your situation, then good for you. I guess I'll just go to the corner drug store and complain some more. [ ] Re: LLS Statement - Neal > On the rest, maybe we should bring this back in focus: My initial comments > were about whether it is accurate to call CML " essentially cured " . It's not > about whether I think I'm going to die of CML, or that I have a constant > negative attitude. > > > > I think that the current lines of drugs are not cures. I think they are > keeping us alive at the cost of quality of life, and I think possibly our > long term health. I don't think I'm going to have negative health > consequences for believing that. _________________________________________ Sorry, I seem to have offended you by offering my point of view, which differs from yours. I don't put on a happy face to deal with CML.....this is just who I genuinely am, and it works well for me! I have most likely dealt with much more than you have CML-wise in 12 years and I still remain optimistic and glad that I have CML and not a really 'fatal' or disabling disease. " Essentially cured " to me means that I am still alive, still functioning well and not a lot to really complain about (yes, some annoying side effects of CML and of meds). 10 years ago, this was a fatal disease and it is NOT anymore for most CML patients....to me, that is 'essentially' cured. It does not mean that you don't have to take medications for it.....it means that you don't die from it. AND like every other topic, there are 2 sides of the coin, and there are many studies that show that attitude and stress level does affect health......not that a positive attitude is going to make you survive a most likely fatal situation, and I was not suggesting that, but that positive attitude does affect general health and lovegevity. No reason for us to share thoughts anymore, we obviously enjoy seeing the world from a different perspective. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 > I thought half the reason for having a CML group was so we could " complain " > about all the crap we have to go through, without getting all the lame 'it > could be worse' and 'turn that frown upside down' comments we hear from > everyone else. ___________________________________ Now you are the one turning things around. Our discussion was about whether it was reasonable for the LLS spokesperson to say that CML was " essentially cured " ............ I see things differently from you and expect that I always will, based on my own CML experience and my time of diagnosis. When someone complains about something, I try to offer some suggestions which I did to you....which you obviously do not want. That's OK....some really just want to complain, or vent......maybe they should include that in their post, ie 'I am just venting, don't bother to try to help me remedy anything'. Now that I know where you stand with this, I won't offer any suggestions in the future.....or respond to you. This should suit both of us well. Quote Link to comment Share on other sites More sharing options...
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