Doctor insights on:
End Stage Myelofibrosis
I've been told my life expectancy is around 5 years. What course will myelofibrosis take to ultimately lead to my death? Why my prognosis now terminal
Myelofibrosis: I am so very sorry to hear of this diagnosis. I have cared for people over several decades as their doctor with this horrible disease. It has no known cause and no effective treatment. It is a scarring of the bone marrow leading to inability to produce life saving red blood cells, white blood cells and platelets. See if a large center (if near one) that specializes in clinical trials can help
Is myelofibrosis a terminal disease? Does it just keep progressing until all bone marrow is replaced by scar tissue that can't produce blood?
Progressive: Yes, you described it well. New treatments are becoming available all the time, and they could extend your life! Get treated!See 1 more doctor answer
Myelofibrosis: A blood disorder which usually affects the bone marrow causing anemia and low counts, and cause spleen enlargement and other constitutional symptoms like weight loss, malaise, risk of infection and bleeding. It can lead to leukemia or a bone marrow failure syndrome. Bone marrow transplant in young patients can be considered. Jakafi (ruxolitinib) is a new drug approved to treat symptoms of myelofibrosis.
Stem cell damage.: Myelofibrosis is associated with damage to dna of bone marrow stem cells. This results in abnormal growth and functioning of these cells. The most common gene mutation is in jak2 where a tiny change in the gene drives the abnormal growth, but there other mutations that occur. Mf is one of the myeloproliferative neoplasias, all caused by similar gene damage.
Danazol perhaps?: Myelofibrosis (mf) is a blood condition where the bone marrow is replaced by scar tissue (fibrosis). One problem that develops is anemia. Medications related to testosterone (androgens) sometimes help. Danazol is one such drug. It has many other uses. Other drugs for mf include jak2 inhibitors, thalidomide derivatives, epoietin and hydroxyurea.
Pmf: A condition where there is a significant and uncontrolled growth/increase of reticulin fibre inside thebone marrow resulting in decrease production of normal blood cells inside the. One matrow, increase production of hematopoietic cells outside the bone marrow, and if severe enough also associated with weight loss, bony pain, increase spleen size, malaise etc. Bone marrow transplant is to cure
Not initially: Myelofibrosis is a disease of the bone marrow which causes increasing fibrosis (scarring) over time and loss of the marrow to function normally. Thus until the marrow is harmed to the degree where you develop anemia or low platelets or low white blood cells you will normally not experience any symptoms.See 1 more doctor answer
Males: Males are more affected by myelofibrosis. About 2/3 of people affected are male.
No: Primary idiopathic myelofibrosis is under umbreall of myeloproliferative neiplasm-where for some unknown reasons, there is uncontrolled increased production of reticulin fibres inside the bone marrow space. While it is not a form of leukemia, however it can transform into acute leukemia.See 1 more doctor answer
Multiple options: Depending on symptoms, options include transfusions, drugs to stimulate red cell production (erythropoietin, androgens), thalidomide derivatives (lenolidomide, pomalidomide), jak2 inhibitors (jakafi), splenectomy, radiation therapy, chemotherapy (hydroxyurea) or bone marrow transplant.
I have myelofibrosis and complication of hardening of connective tissues. Is there a treatment for this complication?
Maybe.: Myelofibrosis is a unusual disease of blood and bone marrow where the marrow is replaced by what looks like scar tissue. This results in bone marrow cells moving to the liver and spleen, those organs enlarge and become hard. There is one drug, jakafi, (ruxolitinib) fda approved to shrink the spleen. There are other drugs like it in trial. Only cure is bone marrow transplant, but there are significant risks.
Unknown: The known forms of bone marrow cancer do not cause myelofibrosis Rather Myelofibrosis is a rare form of cancer of the bone marrow itself where the marrow is replaced by scar tissue and is not able to make healthy blood cells. It is considered to be a form of chronic leukemia and represent a group of blood disorders called myeloproliferative disorders.
I've been diagnosed with myelofibrosis after many years looking for a cause to my poor health. Will I ever be cured? Is it a cancer, I've read both.
Not cancer: It is a mutation in a protein jak2 that causes scar tissue in the bonemarrow where you don't make enough red cells. There are more treatments coming but now most treatment is aimed at your symptoms. At this point there is no cure.
My haemotologist told me I have around 5 years before I die from myelofibrosis. What can I expect? Am already in wheelchair as I fafaint when walking.
None of us truly: Knows when we will die but you have some information from your doc. Many will die before you so please make the very best to the time you have. Try to use your suffering to help others somehow, perhaps on line. Peace and good health.
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