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  #1  
Old Sat Apr 7, 2012, 10:16 PM
Treemonkey Treemonkey is offline
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Join Date: Apr 2012
Location: Jersey Shore, PA
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Need Some Information

Hi I am a 47 yr old male diagnosed with MDS RAEB-II on April 3, 2010. My wbc is 3.6 my platlets are 65. My Oncologist is sending me to Hershey Medical Center, Hershey PA., on Monday. Any questions I should ask? I'm very scared because I don't know what to expect. I have always been in good health. I am very active and very rarely sick. I was diagnosed through a routine blood test I had done before having a colonoscopy. Any information would be most appreciated. Thank You. Donnie, Jersey Shore, PA.

Last edited by Treemonkey : Sun Apr 8, 2012 at 12:46 PM.
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  #2  
Old Sat Apr 7, 2012, 11:00 PM
rdavidp rdavidp is offline
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Location: Maryland
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Don't really have an answer to your question about what to ask the doctor as we are going through this ourselves. I saw your age and just wanted to let you know that my wife is 42 years old and was officially diagnosed as MDS-RAEB II on March 6. She is at John Hopkins as an inpatient finishing up induction chemo. Our doctor there thought that the best treatment option for my wife was full induction chemo with a bone marrow transplant to happen sometime in the near future. Of course each case is different. I think the doctor went this route due to the genetic findings in my wife's bone marrow biopsy. If you don't know, ask your doctor if genetic testing was done on your bone marrow biopsy. I believe it is called a FISH test.
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Caregiver to wife, 42 years old. Diagnosed MDS-RAEB II with auer rods and trisomy on chromosome 8. Currently under going induction chemo.
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  #3  
Old Tue Apr 10, 2012, 02:44 AM
cathybee1 cathybee1 is offline
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Location: Fort Jones, California
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Here might be a place to start. Writing down the questions ahead of time has been very helpful for us.

http://www.cancer.net/patient/Cancer...20the%20Doctor
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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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  #4  
Old Tue Apr 10, 2012, 10:17 AM
DanL DanL is offline
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I think that the list that Cathybee provided is a very good starting point. I would add a couple of questions to the list since they are not always explicitly covered in a conversation about treatment. 1) Is a transplant right for me? 2) Should we begin a search for a donor now? 3) do you have any cytogenetic anomalies and how do they affect your prognosis?
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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