How Will Myelofibrosis Affect My Life? You or your loved one has been diagnosed with myelofibrosis. What does this mean and what can you expect? We’ll go through some scenarios to help you understand the process and your options.
I’ve just been diagnosed with myelofibrosis. What does this mean?
Myelofibrosis is an uncommon bone marrow cancer that disrupts the body’s normal production of blood cells and causes scarring in the bone marrow. In a healthy body, stem cells in the bone marrow become either white blood cells, red blood cells, or platelets. In myelofibrosis, mutated DNA in the stem cells cause the body to instead produce immature blood cells, called blasts, that do not become the proper blood cells. The body will instead underproduce red blood cells, and overproduce white blood cells, leading to complications in time.
Three common issues caused by myelofibrosis are anemia, easy bruising and bleeding, and an enlarged spleen. However, all three are slow to develop, and depending on when you’re diagnosed, you may not experience symptoms for several years. If this is the case, aside from regular monitoring and checkups with your doctor, your life will continue mostly as normal.
Myelofibrosis causes anemia by slowing red blood cell production. Red blood cells are what bring oxygen to your body’s tissues, so as your anemia increases (and red blood cell count decreases), you can expect fatigue, weakness, and shortness of breath.
Another common result of myelofibrosis is a disruption to platelet production at varying levels. Platelets are the blood cells responsible for blood clotting, so as your platelet count is disrupted and your ability for blood to clot is lessened, you can expect your body to bleed and bruise easily.
Myelofibrosis also often causes your spleen to enlarge (about 90% chance). Your spleen helps with white blood cell production and fighting off disease, so when your bone marrow becomes damaged, the spleen tries to overcompensate and grows too large from working overtime. If your spleen grows larger than normal, you can expect abdominal pain, a false feeling of fullness, and as a result, weight loss.
It is also important to note, there are other complications from myelofibrosis.
What happens when I start to develop myelofibrosis symptoms, like the ones discussed above?
Once you start to develop symptoms from myelofibrosis, the goal will be to manage and control them, and there are a variety of treatments based on your case and the symptoms you’re experiencing.
Treatments for anemia focus on increasing blood cell count. This can be done through drug therapies like Thalidomide (Thalomid), blood transfusions, and androgen therapies.
Treatments for an enlarged spleen center around trying to reduce the size of the spleen. This can be done through chemotherapy and radiation, but a more common step is through drug therapies. The drug Ruxolitinib (Jakafi) focuses on specific abnormalities present within the cancer cells. Specifically, the drug targets the JAK2 gene mutation, which is present in 50-60% of myelofibrosis patients, and aims to reduce the size of the spleen and lessen its related symptoms.
New options and what I can do
What if I’ve tried any of the above treatments, like Ruxolitinib, but have not seen a lessening of my symptoms?
You have the power to take your health and your myelofibrosis treatments into your own hands. At any stage in your journey, you should look into eligible clinical trials. Clinical trials test new and promising cancer treatments to diagnose, prevent, or treat a disease. Clinical trials help to advance the field for the future by finding better alternatives to standard treatments, often with less side effects.
As an example, have you tried Ruxolitinib but found the results were not helping to lessen your symptoms enough? Did you feel fatigued, and weak with flu-like symptoms after treatments? One current clinical trial pairs Ruxolitinib with a second drug, Parsaclisib, that has shown to help decrease spleen size in myelofibrosis patients. This is a phase 3 trial and has proven safe and successful. You can find out more about whether you’re eligible for this trial or others here.
By enrolling in a clinical trial, you’ll have early access to new drugs and therapies at any stage in your cancer. Early access is a major benefit when you’re seeking new studies. It’s time you make choices to affect your myelofibrosis instead of letting it affect you!