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#1
Sun Feb 3, 2013, 11:22 AM
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New Diagnosis
My 76 year old dad was diagnosed this week. Had bone marrow biopsy, staged intermediate 2 with refractory anemia, neutropenia and low platelets- that is new. Has been the picture of health , still jogging 4 miles and lifting weights. We want to get second opinion re treatment. Doctor in Delaware told him he is not eligible for marrow transplant. Suggested Vidaza regime instead.
We are able to travel to a hospital that specializes in MDS, can someone give me the name of a great MD in Philly, John Hopkins or NY. They are planning to travel to Florida for a few months, so my dad wants to watch and wait. Not sure if he should, as it can convert to AML at any time and then standard treatments would be ineffective. He has not had any transfusions or meds to boost blood cell levels. Thanks for any help, Carla 
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#3
Thu Feb 21, 2013, 09:33 AM
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Hi Carla, a few weeks ago a Doctor came to speak at an MDS patient info session we had at Cancer Care Manitoba. His name is Dr Lewis R Silverman. He is the Director of the MDS Centre at Mount Sinai Hospital in New York. He was pretty amazing.
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Tammy, age 50; Diagnosed MDS Deletion 5Q- in 2008; Currently on Lenalidomide.
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#4
Fri Feb 22, 2013, 08:51 PM
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If he is in FL and near Jacksonville Florida. Tell him to call the Mayo Clinic. They are my hospital and they are some of the best...
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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#5
Sun Feb 24, 2013, 12:16 PM
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Dr. Selina Luger at Univ of Penn is well-known. Also Steve Gore at Hopkins. Gore is perhaps better known.
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Bob Weinberg. MDS-RARS, dx 5/98 @48yrs. Over 800 units of RBCs so far. Tx freq 7-10 days. Converted to AML, February 2013. Slated for BMT in June if lucky.
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#7
Wed Feb 27, 2013, 12:16 AM
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Yes, Moffitt Cancer Center
Carla, your dad sounds like he is early in the disease process and "watch and wait" is a wonderful place to be. That being said the more he and you know about MDS the easier the future will be. If your dad wants to explore getting the opinion of one of the experts in MDS, Dr Alan List and his team are renown, well written and called on for their evaluation for some of the most difficult cases. Their research and articles speak well for them. We traveled 650 miles for their opinion.
I can not sing the praises of Moffitt Cancer Center enough, they are compassionate, caring and on top of every development in the field. Everyone is so positive. They are also doing genome research. Dr Anesetti who heads the Bone Marrow Transplant program is remarkable as well. An artist and a scientist, able to micromanage the healing process after HSCT. Moffitt's referral process is easy to navigate. If you need any help let me know. My best to you and your family as you navigate this difficult time. kris
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Kris, wife of Rick. DX; MDS/ Ringed Siderblast 5/2006. Supportive care, then Vidaza x 25 mo. HSCT 11//1/11 doing GREAT! 
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#8
Wed Feb 27, 2013, 12:19 AM
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So right!
Quote:
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Kris, wife of Rick. DX; MDS/ Ringed Siderblast 5/2006. Supportive care, then Vidaza x 25 mo. HSCT 11//1/11 doing GREAT!
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