Help me fight Essential Thrombocythemia

Hi, my name is Pamela. I am 41 yrs old, and this is my story.

It all began sometime in 2016 when my platelet count was slightly on the high side. Every year, when I'd have my yearly physical, I would get a biometric screening done. As years went by, my platelets kept rising. My migraines and aura migraines were happening more frequently, and my vision was becoming cloudy at times. I had my eyes checked, but nothing was found. An MRI of my brain showed no tumor or blood clots. Had an ultrasound/echo on my heart and main arteries, and all was clear. I was then referred to see a Neurologist for my migraines. When I had my first appointment with them, I mentioned that I have a history of high platelets. The Doctor did a complete blood count, and my platelets were even higher. Something was not right with my blood. She put me on aspirin for the platelets, and referred me to see a Hematologist.

After seeing a Hematologist, I had another complete blood count done and was tested for JAK2. My platelets were higher, and I was positive for JAK2. I was then ordered to have a bone and bone marrow biopsy, which was done this past Feb. 2022. When the results were in, I was diagnosed with Essential Thrombocythemia. A rare and incurable blood cancer.

*MEDICAL EXPLANATION

Essential Thrombocythemia is a rare chronic myeloproliferative neoplasm (MPN) that increases the number of platelets in your blood. About half of people with ET have the JAK2 (Janus Kinase) mutation. JAK2 V617F mutation should not be present. It is a sign of a hematologic condition but is not specific. The reason why some people acquire genetic changes that cause the disease is unknown. It causes the body to make the wrong number of blood cells. If left untreated, this can transform into myelofibrosis or acute leukemia.

I had to see a different Oncologist due to my previous Doctor leaving. After having my first visit with another Doctor, she immediately started me on Hydroxyurea (chemo). While being on chemo for a month, I was encouraged to go to Moffitt Cancer Center for a second opinion. I found an Oncologist there that specializes in MPN disorders. He viewed my history and immediately took me off Hydroxyurea. He knew the treatment wasn't right for me. (Hydroxyurea is just a temporary "band-aid" and will only give me skin cancer in the end.) He ordered a complete blood count, along with where my JAK2 frequency was at. The JAK2 had gone up.

My follow-up appointment will be discussing a different kind of chemo called

Pegasys Interferon. This treatment will be targeting the JAK2, making it undetectable. It is one injection once a week for 2 years. Another bone marrow biopsy was talked about, which may happen later on.

With all the different Doctors, tests, biopsy, medications, and now seeing an Oncologist at a cancer hospital, my medical expenses have gotten to be too much for me. I work two jobs six days a week, own my own home while providing for my daughter all by myself. I have Psoriasis, low iron deficiency, and battle with frequent joint pain in my spine and hips due to Osteoarthritis. It can be so painful that I have a hard time getting up or moving around normally. I may look healthy, but what I feel tells a much different story. I continue to remain positive and strong and keep moving forward. Thank you for taking the time to read my story. Your donation is much appreciated.