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Kat hears patients ask: "I have this
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be…
problem ...…
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From a sunny, lively retirement to MDS then AML? That was Shirley's life! After treatment in a
Clinical Trial
Clinical Trial:
A type of research study that tests how a drug, medical device, or treatment approach works in people. There are several types of clinical trials. Treatment trials test new treatment options. Diagnostic trials test new ways to diagnose a disease. Screening…
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Dr. Tiffany Tanaka from the University of California, San Diego explains the development of High-Risk MDS into AML. She talks about new diagnostic and treatment regimens for these patients.
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Terri shares the journey of Thomas' surprise diagnosis, rigorous treatment, and wonderful survivorship in this conversation.
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Why would I choose a
clinical trial
clinical trial:
A type of research study that tests how a drug, medical device, or treatment approach works in people. There are several types of clinical trials. Treatment trials test new treatment options. Diagnostic trials test new ways to diagnose a disease. Screening trials test the best way to detect a…
? What kind of additional care would…
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10 years after diagnosis, Leigh Ann needed a
bone marrow transplant
bone marrow transplant:
A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many patients, a BMT is not an option due…
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Dr. Abdulraheem Yacoub talks with Leigh Clark about MDS-MPN overlap. He includes how molecular testing is used in determining treatment options.
He also discusses the newly approved drug, Luspatercept, for the treatment of MDS and MDS-MPN overlap syndromes.
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Dr Vu Duong explains risk classifications for MDS. He dives into IPSS and IPSS-R scores, focused on helping patients to understand the meanings of high-risk and low-risk MDS.
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Persistence, Advocacy, and a
Clinical Trial
Clinical Trial:
A type of research study that tests how a drug, medical device, or treatment approach works in people. There are several types of clinical trials. Treatment trials test new treatment options. Diagnostic trials test new ways to diagnose a disease. Screening trials test the best way to detect a…
: Theresa is now a Survivor!
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The recently-approved hypomethylating treatment, Inoqvi, is a daily oral version of two IV or subcutaneous medications. Listen to Dr. Amer Zeidan of Yale Cancer Center explain which MDS patients could qualify, and what it means for their treatment at the link.
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Eliot's disease of
Myelodysplastic Syndromes
Myelodysplastic Syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People with MDS have low blood cell count for at…
with IDH1 and…
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Dr. Gustavo Rivero describes strategies for the management of Low-Risk MDS, or
Myelodysplastic Syndromes
Myelodysplastic Syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People…
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Dr. Ehab Atallah discusses the good news about treatment for MDS, Myelodysplastic Syndromes, for patients ages 65 and older.
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Dr. David Steensma discusses MDS and toxins with Leigh Clark, Patient Educator. Dr. Steensma is an associate professor at Harvard Medical School and faculty member in the leukemia program at the Dana-Farber Cancer Institute and Brigham and Women's Hospital in Boston, Massachusetts and the Edward P. Evans Chair in MDS at Dana-Farber Cancer Institute
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Nancy has worked with hundreds of patients in her career, guiding patients through decision-making and treatment. Discover her best advice for
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal…
Podcast Episode last updated
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Can sleep affect your treatment for
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be…
diseases? Dr.…
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Patrice banned "stinkin' thinkin'" from her mind as she began treatment for aplastic
anemia
anemia:
(uh-NEE-mee-uh) A condition in which there is a shortage of red blood cells in the bloodstream. This causes a low red blood cell count. Symptoms of anemia are fatigue and tiredness.
. Later, she'd continue that practice during her
bone marrow transplant
bone marrow transplant…
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Listen to Duane's story, leading to his 2009 transplant, and continuing survivorship!
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"Never give up!" That's Brandi's advice to patients. Her diagnosis was months in coming, and then more time to find the best allogenic donor for her transplant---over 19 months in the hospital between diagnosis and successful transplant.
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"Three hours after they drew my blood, my doctor called to tell me to go immediately to the emergency room!" Because Kirollos was a pharmacy student, he understood that having such low blood counts needed fast treatment, but he was still surprised. Discover how he progressed from diagnosis to transplant to survivorship quickly here.
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