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MDS Myelodysplastic syndromes

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  #1  
Old Mon Feb 6, 2012, 03:09 PM
annmonster annmonster is offline
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Small Defeats

Hi All

Saw Hemo today ..... starting 5th cycle of Vidaza this week ..... he says Vidaza has NOT been a 'smashing success' and that I need to go to a 'higher community' which can help.... in this case , I will be going to City of Hope in about 4 weeks to see if they have any 'brilliant' ideas.... Dr. keeps mentioning Bone Marrow Transplant ... ( I'm 60 years old and in good health other than MDS/CMML ). BMT sounds SO daunting....anybody out there gone thru it ? Or did you choose a chemo approach instead ??? So discouraging......
Thanks for any thoughts.....

Ann
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  #2  
Old Mon Feb 6, 2012, 05:11 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by annmonster View Post
Hi All

Saw Hemo today ..... starting 5th cycle of Vidaza this week ..... he says Vidaza has NOT been a 'smashing success' and that I need to go to a 'higher community' which can help.... in this case , I will be going to City of Hope in about 4 weeks to see if they have any 'brilliant' ideas.... Dr. keeps mentioning Bone Marrow Transplant ... ( I'm 60 years old and in good health other than MDS/CMML ). BMT sounds SO daunting....anybody out there gone thru it ? Or did you choose a chemo approach instead ??? So discouraging......
Thanks for any thoughts.....

Ann
Ann,

I'm sorry you didn't get the smashing success you deserve. I hope you see better results in the next few weeks. It's hard to decide when to conclude that Vidaza isn't working well enough to continue.

The good news is that the hematologists at City of Hope are excellent and they will be able to give you recommendations for what to do. Your overall good health gives you more options, including the possibility of a "mini-transplant" without all the heavy chemo and radiation, if a matched donor is identified. You don't have to rule any choices in or out for now.

Are you still going to need the surgery you asked about last month?
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  #3  
Old Mon Feb 6, 2012, 11:27 PM
annmonster annmonster is offline
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Hi Neil ...

No shoulder surgery for now ( Dr. over-reacted .... : ) ).... we shall see how physical therapy goes first .....

Thanks , as always for your encouragement.... it's good to chat with 'big picture' people.......it always helps reduce the fear factor ..
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  #4  
Old Tue Feb 7, 2012, 11:22 PM
mausmish mausmish is offline
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Hi Ann,

Sorry the Vidaza isn't working so well! I'm currently 58, had my BMT at age 57, and have done great. I'm so glad I had it done. I do understand how daunting the prospect is - I was very afraid - but it was not nearly as bad as I anticipated. Overall good health is a big factor in your favor. I documented my transplant and beyond in my blog, MausMarrow. Best of luck at City of Hope. I've heard nothing but good things about the facility.

Karen
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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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  #5  
Old Wed Feb 8, 2012, 02:45 PM
annmonster annmonster is offline
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Thanks, Karen....

I will most definitely check out your blog.... glad that you're doing so well as a result of your BMT .... that in and of itself is a huge encouragement to me : )

Take care.... !!

Ann
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