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#51
Tue Aug 9, 2011, 11:24 PM
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Quote:
It does sound like a little caution is in order. Were I in your shoes, I'd certainly be thinking hard about a little watching a waiting. But everyone is different and you have to do what's best for you. Keep us posted! Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com 
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#52
Wed Aug 10, 2011, 08:59 AM
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Thanks....my gut feelings are kicking in and they have gotten me this far....nobody is going to bully me at this stage of the game!
Some good input here (thanks tytd) and I am giving my brain the day off....but will listen to what my CBC and Dr S has to say tomorrow and then let you all know..... This is such a wonderful sounding/thinking board that I can't thank you all enough....it really helps me, when truthfully, I am skeptical that the medical profession has MY best interests at heart...they are, and have to, going to treat the masses as a whole, otherwise, no one would benefit........it's just that I tend to follow atypical patterns, and always have! Watching and waiting seems right for me as well....if I miss out on this, then it is meant to be. At least I know I have a healthy heart and lungs! And as I mentioned, completely overwhelmed, I put in it God's hands-- and it seems he sent me a message, loud and clear! This, from someone, who once questioned her beliefs....NO MORE!!! The power of prayer is unbelievable....I should tell some stories in another forum.... More later!
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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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#53
Wed Aug 10, 2011, 09:20 AM
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Hi Cheri,
For what it's worth I think you're on the right track as well. No more so than believing that God has sent you a loud and clear message and that you're putting it all in His Hands - because that's where it is anyway. Keep the faith and God Bless, Sally
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#54
Sat Aug 13, 2011, 10:18 AM
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The decision has been made to postpone the TPA clinical trial....Based on the following, I couldn't see adding more to the mix at the moment....but the folks at CINJ were wonderful and said I could try it again if I ever needed or wanted to....
My last CBC was WBC 2; Hg 9.5, Platelets 52!!!! These are all up from the previous CBC, 3 days before, and the first rise in all 3 numbers in well over a year. This time last year I was just beginning Vidaza! And this is the first time I haven't needed a platelet transfusion in over a month.....Interesting to learn that having a bacterial or viral infection can influence the # of blasts in your bone marrow....which once again, makes the numbers game a bit sketchy.... I'm a little superstitious about writing this....I hope it's a trend and not a fluke! I feel so lucky and thankful and hopeful for anyone who is battling this crazy disease---that you just never know and cannot give up!!!! I'm having a hard time though, shutting off my racing thoughts.... I feel great and my gut tells me to "watch and wait" for a while.....and letting my body react and adjust to being left alone.... I'm feeling very lucky--Not only was I able to attend my nieces Nursing School graduation (which I would have been in the hospital and missed) but since I didn't need a transfusion, went to the racetrack yesterday, and after losing all day, not only won back my losses but won another $80 on the LAST race! Seems a little prophetic, huh? Thank you for letting me share my happy news and I wish some good news for all of you....
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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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#56
Sun Aug 14, 2011, 05:59 AM
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Higher counts
Wonderful Cheri
 !Kind regards Birgitta-A
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#57
Sun Aug 14, 2011, 06:00 PM
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Feeling great is the kind of news we all hope for. Thank you for sharing these last speed bumps and potholes of the journey with us -
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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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#59
Mon Aug 15, 2011, 05:45 PM
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Just to update:
Today's CBC WBC 1.6 Hgb 9. Platelets 50K!  Seems like #'s are holding pretty well, and hoping for some more rising soon.... Every day is an adventure!
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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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#60
Tue Aug 16, 2011, 10:22 PM
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Such great news, Cheri. Thanks for sharing with us. Your perseverance and positive attitude are an inspiration.
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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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#62
Tue Sep 13, 2011, 09:21 AM
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Here we go again!
It's like deja vu, all over again.....
 Low grade fever, 99's, low 100's, low counts..... (Clinical trial didn't happen as updated in another post......) I believe I've had a bout of diverticulitis.....spastic colon.....ugh..... Yesterday, my platelets were 19k...not one sign of bruising! Normally I would see little bleeds all over....WBC .05; hgb 8.5 I wonder if when your body is fighting something, it skews all of your blood numbers. Or how about meds? I am on Cipro, Flagyl, Bentyl, Exjade.... Other than feeling tired, and indigestion, I feel ok. I am seeing the Dr today and will bombard him with my usual 20 questions....... I don't feel as panicky as I did last time, as I recovered from those #'s. I met a lady whose Hgb gets as low as 5 and she doesn't even feel it. This machine, the human body, can take quite the stressors. I'll update you all after my platelet transfusion later today!!!!!
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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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