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#1
Sat Feb 4, 2012, 09:32 AM
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Small victories
Honestly, this MDS is certainly the mind game of the century....
At Mondays CBC--WBC .07, Hgb 9.7 (after transfusion Fri) Platelets 36 Thursdays CBC WBC 2.3; Hgb 10.1, Platelets 56--- What? MY HEMOGLOBIN ROSE for the first time in I can't remember when! For the first time since August, I feel human again! Like I can do something besides lay on the couch all day. My head feels clear and I have the energy to go out and shop or whatever...my GI issues are resolving nicely. My reason for this post is that you just never know---hang in there and don't sweat (or celebrate too much) every single test! Wacky numbers happen! And sometimes feeling better is right around the corner!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly 
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#3
Sat Feb 4, 2012, 01:13 PM
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Good counts
Hi Cheri,
Wonderful  ! Hope the counts depend on response at Danazole and Revlimid and that they will hold.Kind regards Birgitta-A
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#4
Sat Feb 4, 2012, 03:28 PM
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YESSSSSSSS !!!!! Thanks for sharing the encouraging news.... it gives the rest of us hope : )
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#6
Sat Feb 4, 2012, 08:15 PM
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Great news!
 Yahoo, Cheri! So happy for you and that you can get back to a normal life. I know how you feel; after my counts rose, I actually enjoyed housework, laundry, etc.
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66 yr female;diag 6/09; MDS, unspecified, normal cytogenetics: blasts 10%; successful Dacogen;every 4th wk.; as of Aug.'12 changing to every 5th wk., stable at Hgb 12-14/platelets 200-300/wbc 2.-3.
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#7
Sat Feb 4, 2012, 09:27 PM
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Cheri, what great news! Thanks much for sharing - I think of you often.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#8
Mon Feb 6, 2012, 01:24 AM
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WOOT!!!
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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#10
Mon Feb 6, 2012, 04:57 PM
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Great news! Up is good!!!
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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#11
Mon Feb 6, 2012, 05:02 PM
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danazol for 6 weeks
I enter the protocol for Telemere Disease on December 28. Since I have been on the drug have felt terrible. No energy, no endurances but may be to issues with my lungs. I haven't noticed any change. I had to have a blood transfusions early in January due to low counts. Looking forward to something improving how I feel.
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#12
Sat Feb 11, 2012, 11:14 AM
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Back to reality!
Hg went down to 9, then 7.8 in one week! Had a transfusion yesterday..... Sure was nice while it lasted! But where there is positive change, however small, hope remains!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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#13
Sat Feb 11, 2012, 05:07 PM
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Thank God for the Little things
Sorry to Here that. Sounds like you have a positive attitude. Keep it up. That's why I am thankful for all the little things. That is all i really have. Keep your chin up.
God Bless Anneg
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