Questions to ask about insurance coverage and issues:
Myelodisplastic Syndrome involves a group of disorders that are often called preleukemia. It is not generally known what puts someone at higher risk for MDS. Exposure to benzene, radiation and chemotherapy drugs are sometimes associated with MDS.
The most common symptom is anemia, an abnormally low number of white blood cells (neutropenia), and thrombocytopenia or a combination. Patients with MDS often develop severe anemia and need frequent blood transfusions. In most cases, the disease worsens and the patient develops low blood counts (cytopenias) due to progressive bone marrow failure. In about one third of patients with MDS, the disease transforms into acute myelogenous leukemia (AML), usually within months to a few years.
The myelodysplastic syndromes are all disorders of the stem cell in the bone marrow. In MDS, blood production (hematopoiesis) is disorderly and ineffective. The number and quality of blood-forming cells decline irreversibly, further impairing blood production
Each year between 15,000 and 20,000 new cases of MDS are diagnosed in the US. Patients tend to be around the age of 70 at the time of diagnosis, although people of any age can develop the disease. MDS is classified as either primary (also called de novo) — disease that has no known cause — or secondary (also called treatment-related) MDS. Treatment-related MDS is caused by previous treatment with chemotherapy or radiation therapy, which is given for a previously diagnosed cancer. The number of new cases of MDS is rising, both because people are getting older and are now living longer after treatment for their first cancer.
In order to diagnose MDS your doctor will ask you questions about your past health and symptoms. Your doctor will do a physical exam. MDS is suspected in elderly patients with refractory anemia, leukopenia or thrombocytopenia. Testing such as a complete blood count and bone marrow examination are completed.
The treatment will try to eliminate or help the symptoms. Azacitidine is a medicine that relieves symptoms, decreases the rate of transformation to leukemia and the need for transfusions, and it probably also improves survival. About 16% of patients had a complete or partial response. Other therapy can include red blood cell (RBC) transfusions, platelet transfusions for bleeding, and antibiotics for bacterial infections. Another similar drug Deoxyazacitidine is sometimes effective. About 20-40% of patients had a partial response to the medicine. Some patients require erythropoietin, a medicine, to support their red blood cell production. When there is a severe decrease in white cells Granulocyte colony stimulating factor (GSF) can be used, which is a growth factor produced by a number of different tissues to stimulate the bone marrow to produce granulocytes and stem cells.Thrombopoietin, a medicine that regulates production of platelets by the bone marrow can be used for severe thrombocytopenia. Allogeneic stem cells transplants are useful.
Cancer patients often benefit from incorporating other health practices into their lives, based on discussions with their doctors about the type of treatment they’re going through, their physical capabilities, and other physical conditions. Many of these health practices can also help alleviate stress experienced by family members and caregivers as they care for their loved one who is undergoing treatment. Explore some of the other health practices that might provide benefits for you and your support network.
National Cancer Institute – questions and answers about acupuncture and cancer
American Academy of Medical Acupuncture – article by Dr. Eugene Mak “Acupuncture in Cancer Treatment”
Memorial Sloan-Kettering Cancer Center – information for patients & caregivers about how acupuncture works, its uses, possible side effects, and who should be cautious about acupuncture
Dana Farber Cancer Institute – article by Richard Saltus “Can Acupuncture Ease Cancer Symptoms?”
Very Well – “Acupuncture for Cancer Patients”
International Association of Reiki Professionals – “How Reiki Helps Cancer Patients”
BeatCancer.org – “Reiki Healing and Cancer”
Dr. Josh Axe – “What is Reiki and Can it Really Help Cancer Patients?”
MD Anderson Center – “The Benefits of Oncology Massage”
MD Anderson Center – “Massage for Cancer Patients : 4 Tips to Find a Qualified Therapist”
Society for Oncology Massage – “Client & Patient FAQ”
Fred Hutchinson Cancer Center – “Power of Touch : How Specialized Massage Helps Cancer Patients”
Cancer Council – “Types of Massage and Touch Therapies”
Very Well – “Massage Therapy for People With Cancer”
Yoga Journal – “Facing Cancer with Courage” (benefits and personal experiences shared by people who practiced yoga to help deal with the stresses of fighting cancer)
The Guardian – “How yoga could ease cancer patients’ pain and fatigue”
Psychology Today – “Yoga and quality of life for cancer patients”
National Geographic – “New study shows yoga has healing powers”
Very Well – “Benefits of yoga for cancer patients”
Memorial Sloan Kettering Cancer Center – “Tai Chi”
CancerActive – “Tai Chi : the energy within”
Ying Yang House – “Tai Chi found to reduce fatigue in patients undergoing chemotherapy”
Dana Farber Cancer Institute - “How can reflexology help cancer patients?”
Susan G. Komen Foundation - “Reflexology”
Lymphoma News Today - “Reflexology: Lymphoma”
MD Anderson Center - “How mindfulness can help cancer patients find happiness”
Cancer Network - “Mindfulness Meditation”
Cancer Research UK - “Meditation”
Positive Psychology - “MSBR: 25 Mindfulness-Based Stress Reduction Exercises and Courses”
A type of disease in which the bone marrow makes too many red blood cells, platelets, or certain white blood cells. Myeloproliferative neoplasms usually get worse over time as the number of extra cells build up in the blood and/or bone marrow. This may cause bleeding problems, anemia, infection, fatigue, or other signs and symptoms. Certain myeloproliferative neoplasms may become acute myeloid leukemia (AML). Myeloproliferative neoplasms include chronic myelogenous leukemia (CML), polycythemia vera, primary myelofibrosis, essential thrombocythemia, chronic neutrophilic leukemia, and chronic eosinophilic leukemia. Also called chronic myeloproliferative neoplasm. (source: National Cancer Institute)
The symptoms can generally appear suddenly and can be similar to a virus or the flu. These symptoms can be from a wide range of conditions and illnesses, but if they continue then you should consult a physician.
Symptoms can include:
Diagnosis of myeloproliferative disease can be challenging. It often does not have symptoms in the early stages, and when it does they are often mistaken for signs of other diseases. A doctor must have a high degree of experience in MPD to make an accurate diagnosis.
If MPD is suspected, blood tests will be ordered. The blood test results can validate the suspicion, but a bone marrow biopsy may be required to definitively confirm the diagnosis. (Source: MD Anderson Cancer Center)
Cancer patients and their families often find it helpful to talk with others who have been in their same situation, but can find it hard to get to support group meetings, or even to find people to connect with. Sometimes an online support system is one answer. Read more…..
Cancer Care – online support and telephone support groups for cancer patients, loved ones, and people who have lost a loved one to cancer; groups vary by type of cancer and are led by oncology social workers
Cancer Support Community – toll-free telephone cancer support for anyone affected by cancer; topics include: Why do I need support?; Should I join a support group?; Patient-centered care; The living room (cancer message boards moderated by a licensed professional); Group Loop (for teens); and online help chats with counselors
Caring Bridge allows families to set up a free website that they can update with their child’s condition and progress.
Circle of Care Lifeline program – Provides newly diagnosed families with survivor families for informal emotional support.
First Connection Program – From the Leukemia & Lymphoma Society, program matches patients with volunteers who have gone through a similar experience so they can provide informal counseling and information. Matches are made based on diagnosis, age, gender, and other factors.
LLS Community – Online discussion boards provided by the Leukemia & Lymphoma Society, covering a wide range of topics.
Weekly Online Chat – From the Leukemia & Lymphoma Society, this live online chat allows patients and/or caregivers to share experiences; moderated by an oncology social worker. The following chat groups are available: Acute Leukemia, Caregivers, Chronic Myeloid Leukemia, Myeloma, Non-Hodgkin Lymphoma, and Young Adults.