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MDS Myelodysplastic syndromes

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  #1  
Old Thu Jul 2, 2009, 07:36 PM
Frank Winn Frank Winn is offline
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Location: Fairfax, Virginia
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Running out of luck

BMB on Monday confirmed MDS has migrated to leukemia (AML). How we proceed from here will be related to quality of life issues for an old man. Thanks to all of you for your support for the last year or so.

Frank
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80 years old. MDS DX 9/2006 Transfused weekly for 18 months. alsdo Type 2 Diabetic. COP in Lungs. 200 mG Aranesp weekly.No transfusions for 11 months. Have developed elevated white count.
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  #2  
Old Fri Jul 3, 2009, 10:57 AM
Dick S Dick S is offline
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Frank, I will put you on my prayer list. I hope you can beat this thing.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #3  
Old Fri Jul 3, 2009, 01:00 PM
launch launch is offline
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Praying for you...

Frank,

I'll be praying for you too!!!

God Bless,
Cindy
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  #4  
Old Sat Jul 4, 2009, 04:51 PM
Ruth Cuadra Ruth Cuadra is offline
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Frank,

So sorry to hear your MDS has progressed to AML. I hope you and your doctor can find ways to contain the AML and preserve your precious quality of life. Please keep in touch with us when you can.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #5  
Old Mon Jul 6, 2009, 07:53 PM
Frank Winn Frank Winn is offline
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Join Date: Oct 2008
Location: Fairfax, Virginia
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Started Vidaza

Was offered three options and the Vidaza seems to be the best. One shot daily for 7 days and then 28 days later start another cyle if the counts are doing okay. Will keep you all posted and many thanks for all your prayers.

Frank
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80 years old. MDS DX 9/2006 Transfused weekly for 18 months. alsdo Type 2 Diabetic. COP in Lungs. 200 mG Aranesp weekly.No transfusions for 11 months. Have developed elevated white count.
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  #6  
Old Mon Jul 6, 2009, 10:16 PM
launch launch is offline
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Frank,

Vidaza is working wonders for my husband, Ron. We wish you the best of luck in your treatment! We will keep you in our prayers!!! Keep us posted!

Cindy
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  #7  
Old Wed Jul 8, 2009, 02:18 PM
katherineann59 katherineann59 is offline
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Vidaza

Hi Frank,
So sorry to hear about your last BMB. I do have a good report for you on how Vidaza has worked for me. I'm into my 4th year of treatment with that drug. So far, it is keeping the disease from progressing any further. I go to the University of Chicago for a second opinion tomorrow. I'll keep you in my thoughts and prayers.
Kathy
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Kathy, 47, diagnosed with MDS IPSS Intermediate Risk, Refractory Anemia and Thrombocytopenia both secondary to MDS. 8/06-treatments include 14 shots Vidaza monthly, aeranesp, neulasta when needed also have polycystic kidney disease
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  #8  
Old Mon Jul 27, 2009, 03:27 PM
Frank Winn Frank Winn is offline
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Location: Fairfax, Virginia
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Vidaza cycle 1 Report

I'm going to try to keep this up till the end. First cycle is nearly complete. Start 2nd cycle one Aug. 3rd. Had BMB again this morning to check to see if the Vidaza is doing anything for me. Only side effects that appeared during first 7 days was difficulty sleeping in bed. My easy chair in the living room worked much better. First five injections were done at NNMC Bethesda treatment room. My wife was trained to give them at home on the weekend.
CBC this morning: WBC 16, HG 10.5, Platelets 200. All of your prayers are appreciated.

Frank
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80 years old. MDS DX 9/2006 Transfused weekly for 18 months. alsdo Type 2 Diabetic. COP in Lungs. 200 mG Aranesp weekly.No transfusions for 11 months. Have developed elevated white count.
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  #9  
Old Mon Jul 27, 2009, 04:03 PM
5Q-spray 5Q-spray is offline
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Wishing the best! I will be praying for you as well as everyone else with MDS. Hope your days ahead are comfortable!

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Felica- age 37 diagnosed with MDS 5Q- IPSS Intermediate 1 Risk, Watch & Wait
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  #10  
Old Mon Jul 27, 2009, 10:38 PM
launch launch is offline
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Frank,
I'm so glad you're being treated with Vidaza! I pray you respond as well as my husband, Ron has....

God Bless,
Cindy
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