- KLStone
- Cincinnati, OH
- Member Since Aug 2012
Their Diagnoses (1)
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- Patient: AML with Multilineage Dysplasia (more than one Abnormal Myeloid Cell Type is involved)
- Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 18 years ago, Male, Age: 81
- View this journey (3 Experiences)
Their Links
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KLStone started following
almost 10 years ago -
KLStone shared an experience
Drug or Chemo Therapy (Chemotherapy): oral chemotherapy: thalidomide & Revlimid
injected chemo: Dacogen (decitabine) - low dose protocolalmost 10 years ago -
KLStone shared an experience
Oh No (Diagnosed): Myelodysplastic Syndrome (MDS) diagnosed 2004 following routine physical exam, slightly low platelets and WBC.
It was a SHOCK, MDS is so deadly; my wife Nancy and I couldn't believe how bad it was. I had never had health problems and had never been in a hospital overnight in my entire life.
The first hematologist who did a BMB said we would just "watch it". I already knew from seaching the internet that I was in an advanced stage at RAEB-1 with 8% blasts, I didn't want to just watch it. I found a good hematologist who would treat the MDS aggressively. Dr. Ranga Brahmamdam at the Outpatient Cancer Center of TriHealth, Good Samaritan Hospital has been a wonderful doctor, I also have a wonderful nurse, Cynthia Rahe, who has administered treatments for over 8 years. We love both of them.Before starting my MDS Journey I would like to offer some suggestions:
• Educate yourself on MDS
• Find a doctor you are comfortable with who has experience treating MDS patients
• Keep a positive attitude and never give up
• Take advantage of Patient Conferences such as those offered by the AA/MDS Intl Foundation and the MDS Foundation.almost 10 years ago