Oct 31, 2016 Latest post:
Dec 27, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.
Last March, after many years of curious symptoms and illnesses I was diagnosed with myelofibrosis, a rare blood cancer in the leukemia family. It is thought to be caused by a genetic mutation of a gene, and is not normally inherited. The bone marrow becomes hard and scarred over a period of time, crippling the patient's ability to produce red blood cells, white cells and platelets that are produced in the marrow. These blood cells are damaged or destroyed and the patient can suffer eventually from an enlarged spleen, sudden weight loss, weakness and debilitating bone pain. Unfortunately, by the time myelofibrosis is discovered it has already done some significant damage in other areas and the patient usually has a number of other disorders or deficiencies. (I also have thrombocytopenia-low platelets-and auto immune hemolytic anemia.) Myelofibrosis is a very rare disorder and there is just one drug in use that is approved by the FDA called Jakafi. For some unknown reason researchers have found this wonder drug only works for a limited time with some patients, while other patients can maintain a pretty comfortable lifestyle on the Jakafi for a few years. The gene mutation that occurs in most people affected by myelofibrosis is sometimes referred to as JAK2. Other gene mutations also may be associated with myelofibrosis. Patients whose disease is not progressing rapidly can go on drug trials for new medicines that are gene inhibitors. At this time I am on Jakafi and it has decreased uncomfortable symptoms and shrunk my spleen, but no one knows how long this reprieve will last. For some reason the disease began to progress rapidly this summer and choices for my future had to be made. Approximately 20% of myelofibrosis patients progress to acute myeloid leukemia. (AML)
This disease is not curable, but if the person is a candidate, they can have a stem cell transplant. Stem cells are immature cells that become red and white blood cells and platelets. If successful, the transplant will stop the scarring, the myelofibrosis, and cure the other diseases. The prognosis is determined by a scoring system that the medical team uses and mine is 2-3 years without any treatment. The stem cell transplant and engraftment of new healthy cells is a very lengthy process, but this gives patients their only hope for a new life with someone else's stem cells. A successful stem cell engraftment may take up to 100 days (or more) to accomplish.
Believing I can have a chance at a normal life eventually, I have decided to have the stem cell transplant the first week of December and I will be having the procedure done at Wilmot Cancer Center of Strong Memorial Hospital in Rochester, NY. I am very lucky to have an unrelated donor from "Be The Match" organization and we are told it is a very good match! Steve will be my caretaker throughout my recuperation in the hospital, apartment and at home. We can have visitors on the transplant floor, at the apartment and at home. Guests will have to take precautions to protect me from opportunistic germs as I will have no immunity for a period of time.
Some of our friends and relatives wanted to know about the procedure and follow the progress of the transplant and this website gives Steve the ability to update loved ones without having to write several different emails and posts. We hope this website will help us to communicate simply. If you have any questions, we'd be happy to try and answer them. Thank you for visiting our page!