Sept 2007 Dx
Jan, 2008 started Glevec. Failed after less than 1 yr.
Feb 2009 started Sprycel. Fought fluid build up for over 1 yr, 6-7 out patient draining, 2 lung collapses
Oct of 2010 Hospital, chest tube, 14 liters of fluid drained from around my right lung. Almost as much drained from left lung 2 months off meds.
Feb 2011 started on half dose of Tasigna, 300mg per day
May 2011 dosage increased to 600 mg Tasigna
She said more,
The reason they brought up transplant, it is standard to consider that and consult with specialist and have that rec. on file.
Because of age and no donor, only to be considered as last recourse. She said, She was sorry she did not make it clear to me that was more for SOP and files than real option. It would be great if they had bone marrow from when I was diagnosed, but since that did not happen she will not request it unless I have problem.She also told me she suspects I was not in chronic or blast phase when dx. She suspects I was in advanced phase.
About my old records;
Based on previous Onc comments from the hospital records etc. She does not need his records now. But if I have problems she will go back and get all records. She wants to start all new from when she first saw me. When she found out he diagnosed me in Sept,07 with WB count of 369,000 and sent me home from hospital with no meds for a month and then they did not start til a month after that she was not happy. She asked me if I knew what my counts were. I told her all he said was 100% of cells he tested first time were leukemic. She said, "Don't tell me that! and See, We are starting new" She did say, if I want records now she will get them. Then we discussed Onc and I told her things I had read here. She said, "I guess I don't know how Onc is practiced at non-teaching hospital practices. It is all I have ever known" as she shook her head..
We are trying Adderall a couple times a week as I want for my lack of energy. And she can give me script for med to help with itching. I told her let me try over counter topical and see, unless it gets worse. She also vetoed my old onc. edict that I could not take med for anxiety. She said, "go see whoever you need to. I want you to have as good a life as possible, just make them aware of all meds and Of course they are welcome to call me if they have any questions". Plus she wants list of any new meds for her info.
Anyway, I think I am at good place with right Onc and Great numbers going in right direction for first time since my Dx.