Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Dear Ann, I'm so sorry to hear you had such a rough time on Gleevec. I tolerated it better on 400 mg, but when I got to 600 mg., it became hard to take and I understand what you mean about the diarrhea. I'm glad you took the bull by the horns, so to speak, and ventured to try another drug. It's good that your doctor was willing to work with you, too. Some doctors just won't listen and they don't want to work with another doctor. Gleevec never brought me higher than CHR, never one less Ph+ and that of course could not go on, either, so as soon as BMS went on trial in the second phase, my doctor voluntarily gave me up to another doctor who was conducting the BMS trial. Even though I was not successful with the BMS, I will always be grateful to him, because he saw I needed a change and he went for it. It all happened so fast when he called. I had broken both my feet and was in a wheel chair when they called and said, " Come now. " I scurried and found an apartment and we got ramps for the wheel chair, took the back seat out of the van and went like the Beverly Hillbillies to Houston. It was a wild ride, but the experience was worth it and I met so many friends, some on BMS and some new patients. I met a very frail looking elderly lady who was originally from England. She was there nearly every day, crocheting baby clothes for doctors who were having babies. She was the only person in a trial that I have long forgotten the name of and she showed me the contract saying that it was was first tried on rats. She said she wasn't a rat and was going to beat CML. I liked her courage. She came on the bus every day, as a handicapped person, she was allowed a free pass and she took advantage of it. I hope she is still out there beating down the CML and not allowing it to take over her life, she had so much spirit. I will look for the book on e-Bay and thanks for telling me about it. We went to my son's house today, they were entertaining her family and invited us. One had a young son with a friend who overheard me say something about the internet. He looked at me and said, " You use the internet? " Everyone who knew me laughed and said how late I stayed up reading and writing letters and doing research. I guess he thought as an octenagarian, I might be a mite old for that newfangled stuff. It has been a life-saver for me, I know there are some who are worse off than me, just from lack of knowledge, not that I know everything, but I can now fight my way out of a paper bag and speak up for myself and ask to be heard. I don't have to put up with nonsense, I can shop around for another doctor, so that makes me more secure that I am not a captive slave to one doctor who doesn't know much more about CML than we all do. I can tell by the questions they ask. I like the comaradarie and the concern we have for each other. Jimmy and I are deeply indebted for all the loving emails and cards we received from you. He will be getting the staples out of his chest tomorrow and probably find out if he will be on Coumadin for the rest of his life. Right now he is on enteric coated aspirin, hopefully it will not get to that. I found a butter spread that was cardiologist approved to help him eat bread with a little buttery taste. It has Omega 3 oils and that is very good for the heart. Picked up Miracle Whip Light and some fat free ice cream. I make him milk shakes with it every day to try to put some weight on him. Time to hit the pillow, tomorrow we have an early appointment at the heart clinic. Maybe he should join the " Mended Hearts " club, we have one here. I want him to get involved in his recovery, just as we do with CML. He depends on me to do the research, but at least he is reading it. G'nite mates, and from down under with her jokes. There is an old vaudeville song that was entitled " Keep Them Laughing " , some funny comedian would get up in a silly suit and run around clapping and singing that stupid song, but it made you laugh and forget your troubles for a few moments. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2009 Report Share Posted February 22, 2009 My rheumy always makes sure that I get a flu shot every year. I don't understand why yours would not want you to bother. Even if it doesn't prevent your getting flu, perhaps it would keep you from getting a sever case. Do you take any vitamins and extra vitamin C? Sue On Feb 22, 2009, at 8:39 PM, Joy Penn wrote: > > My rheumatologist told me not to even bother with a flu shot this > year because it would be totally ineffective, with my non-immune > system. I am thankful every day that I'm walking around supposedly > healthy. It's very hard to deal with, isn't it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 My rheumy doesn't want me to get one either. She says with the Lupus, Spondylitis and severe burns, it would make me even more immunocompromised. -- Dodge Read my blog at: http://jumpthis.wordpress.com Visit me at: http://www./group/a_different_reality ---- marysue <marysue@...> wrote: ============= My rheumy always makes sure that I get a flu shot every year. I don't understand why yours would not want you to bother. Even if it doesn't prevent your getting flu, perhaps it would keep you from getting a sever case. Do you take any vitamins and extra vitamin C? Sue Quote Link to comment Share on other sites More sharing options...
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