Helping patients find the myelofibrosis cancer resources they deserve
What is Myelofibrosis?
Myelofibrosis is part of a group of diseases called myeloproliferative disorders/neoplasms. More specifically, it is a rare disorder in which abnormal blood cells and fibers build up in the bone marrow. This disease leads to extensive scarring of the bone marrow, which often causes anemia. Myelofibrosis can affect anyone; however, it is most frequently diagnosed in people older than 50. The diagnosis of primary myelofibrosis is confirmed by detecting a mutation in JAK2, CALR, or MPL.
If Myelofibrosis occurs on its own it is called primary myelofibrosis. If the myelofibrosis resulted from another disease such as autoimmune disease, it is referred to as secondary myelofibrosis.
Initially, most people with primary myelofibrosis have no signs or symptoms and about one-third of all patients have no symptoms. Common signs and symptoms of primary myelofibrosis include:
- Night sweats
- Bone pain
The shortage of blood cells causes many of the signs and symptoms of primary myelofibrosis. Many of the symptoms of primary myelofibrosis occur because abnormalities affecting the formation of blood cells. The specific symptoms and progression of primary myelofibrosis vary from person to person.
What Causes Myelofibrosis?
It is unclear the exact cause that leads to myelofibrosis, but it begins with gene mutations in the stem cells within the bone marrow. These mutations can be inherited or developed over one’s lifetime. Stem cells make up the platelets, white, and red blood cells. The more abnormal cells with mutations that are replicated, the more the blood cell production will be affected. Most myelofibrosis patients have mutations in the JAK2, CALR, or MPL genes.
Myelofibrosis Risk Factors
Risk factors for myelofibrosis include:
- Age, most patients are over 50 when diagnosed
- Previous blood disorder effecting production of blood cells
- Exposure to radiation and chemicals like toluene or benzene
In some cases, myelofibrosis can lead to Acute Myeloid Leukemia (AML)
There is no way to guarantee you will not develop myelofibrosis, but you can take several steps to decrease your risk, which include:
- Regular exercise and balanced diet to maintain a healthy weight
- Eat foods that promote healthy blood cells
- Get genomic testing to see if you have any of the common mutations seen in myelofibrosis
There is only one approved curative treatment for Myelofibrosis patients, Allogenic Stem Cell Transplantation. Stem cells are taken from a healthy donor and injected into the patient to repair the defective stem cells. Chemotherapy or radiation is often given so the to heal damaged bone marrow.
Therapies are continuously evaluated in clinical trials for their safety to treat myelofibrosis patients. These drugs may improve some symptoms associated with primary myelofibrosis, such as abnormally high levels of white blood cells in the blood, abnormally high levels of platelets in the blood, and abnormally enlarged organs. Clinical trials can benefit those who qualify. Speak with your doctor if you are interested in treatments from clinical trials. These new therapies include:
- Ruxolitinib (Jakafi)
Myelofibrosis Clinical Trials
There are approximately 91 myelofibrosis clinical trials currently recruiting patients in the United States. With so many trials, it is hard to know which one could be the most beneficial for you. Our team of patient advocates, who are oncology nurses, and our artificial intelligence based clinical trial matching system will find the best option for your individual case.
With just a few clicks, you can see your clinical trial matches now. Click here to use our advanced clinical trial match tool.
How Do We Help Myelofibrosis Patients?
Massive Bio offers an independent cancer treatment analysis as well as free clinical trial matching for myelofibrosis patients. Our patient advocates work closely with patients to gather information on their current medical status, and then will provide a list of options from available cancer clinical trials close to your home.
We can also provide a comprehensive case analysis through our Virtual Tumor Board from our cancer specialists. The Virtual Tumor Board (VTB) is comprised of highly specialized oncologists from nationally recognized Cancer Centers of Excellence. In as little as 7-10 days after receiving your medical records, we can provide you a treatment plan virtually, with no need to travel far distances.