Guest guest Posted February 21, 2008 Report Posted February 21, 2008 Donna: I have had CML now for 10 years this March and as you can see, I was diagnosed in the years before Gleevec when Interferon was the best thing available. I, too, am a patient at MDA, though in the last three years I have only sent my tests, rather than going to Houston. I have been PCRU since January 2002. Though my doctors no longer pressure me to have frequent BMBs, for several years I had them every quarter at MDA. They have the best people doing them, and I have only once had a BMB there that was painful. I have never had any mutations. Even now I ask for a BMB once a year and am finally considering having one every other year. It gives me peace of mind, which I cannot get any other way. I urge you to follow your MDA doctors' lead in these matters. They are the experts and treat a multitude of patients with our problems. This is just meant as food for thought. Margot Quote
Guest guest Posted February 22, 2008 Report Posted February 22, 2008 Donna: I have been traveling today and did not get yhour message till late. I too was a patient at MDACC and ended up leaving because I had a difficult time communicating with medical Team [ ] Donna -Dear Friends, Thanks for all your input I am in a panic now to say the least My Onc at Pensacola had advised me that the " standard of care " was to be tested every year and he thot that Cortes was wanting to test me every 3 mos as part of a clinical trial. Which is all well and good but I am 10 hrs from Houston and have 4 children and that trip is not much fun. What I am really confused about is why Cortes never really made a suggestion for my course of treatment after he received the results of tests at MD , I only got a fumbled comment from the Pensacola Onc that he presumed Cortes had put my weird mutations " on the shelf " and to carry on with the standard of care course. Looking back over my results a Ault (DR> Cortes) side kick notes in them that the mutations are due to clonal evolution and can be kept in check with medication. Anyway after considering your sound advice (which I value far more than the Pen Onc (who incidentally has now resigned???) I am going back to my newly assigned Onc in Pensacola next friday and ask him what my course of action should be. I will also e=mail Cortes and ask him what he thinks. Don't ask me why I havent worried about all this til yesterday Call me an Ostrich. One question though. If it is possible to start going into blast phase in the short span of 2 weeks why dont we have our cbc's checked more often. I reached CCR so am only monitored every 3 mos. It scares me to think everything can go wrong so quickly. I am so grateful to you all. Regards Donna x-- In , " marri35 " <tmtip@...> wrote: > > I totally agree... I think your cents are worth so much more... By > pure necessity sometimes we 'figure' things out! Just imagine if > everyone were put on those much smaller doses... GET me a > calculator.. that wouldn't be in the drug company's best interest I > suspect. Just a thought... maybe I'm way off base. I have " self > adjusted " my doses of Sprycel..unfortunately... had great difficulty > finding decent care etc. and had horrible side effects. STill early. > Trying to get into CML guru eventually (no ins). > > > > > > Hey Group. . . > > I have said this before and I will say it again. . . > > " We are a Statistic to the Hematologist/Oncologist; but each one > of us is an Individual in our Survival and the choice(s) we make on > our treatment is the most important decision we will make during our > lifetime " . > > Due to 'side effects', I was unable to tolerate 400 or 600 m.g. > of our gold on a daily basis; therefore, my daily dosage was 300 m.g. > After reaching 0.00136 in 1/2005; I began to 'pulse'. > > My reasoning was 'if it took 300 m.g. to reach '0'; I didn't need > that dosage daily to maintain my response'. My RT-PCR Test was > 0.00021 on February 13th and I take 300 m.g.~~3 - 4 days a week and > my side effects are greatly diminished from the H**L I went through > after diagnosis. > > " I am not a Doctor, never portrayed one on TV; nor do I aspire to > be a Physician in another life " . This is FYI~~my 2 cents only. > > Take care, as always I have ALL in my prayers. . . " K " > > > > > > > > " K " > > " I AIN'T FINISHED YET " !!! > > > > > > > > Quote
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