Guest guest Posted February 21, 2008 Report Share 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 Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2008 Report Share 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 Link to comment Share on other sites More sharing options...
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