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Latest Test and Dr. Appointment


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#1 AliceJane

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Posted 20 December 2011 - 10:15 AM

my history;

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

Oct. 2011 FISH;    O%     First time ever. So Onc ordered deeper test,

Dec 2011 BCR  Test Back;  .0267  Onc. is thrilled! She said I am well on way to Major Molecular Response.

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..

Other stuff;

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.



#2 Trey

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Posted 20 December 2011 - 10:23 AM

Very good to hear.  This is a good example of trying the various drugs and finding the right fit. 



#3 AliceJane

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Posted 20 December 2011 - 10:41 AM

Thank you Trey,

oh, and she did say because I am on Medicare and Medicade that influences when and what tests she orders. She said it is Not only thing but part of it. She reasured me I will get any test that she needs. She made ref to picking battles.

And another thing, that I have never read

. I asked her about the mental problems I have been having, Lost memories during my 4 yrs with CML etc. She said, those luekemic cells, it is not just that they are bad, they are Big, She said all my organs were effected, and my brain was not getting fed.  She said I may never get those memories back and lots of last  4 yrs may be forever lost.

Does that make sense? I should have asked more. I was so excited by my results..



#4 Trey

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Posted 20 December 2011 - 11:01 PM

How do you remember that you have lost memories?  Just askin'



#5 AliceJane

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Posted 21 December 2011 - 05:23 AM

Well, I do or the people around me are playing a joke on me.

My son and daughter and grands will talk about things that happened, that I did or said or events. I have no memory of them. Have lost whole days that I should remember.






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