My journey began in 1999 when I was diagnosed with Essential Thrombocythemia (ET). All I took was a baby aspirin, even then they [platelets] soared to over 1 million.
In November 2004, I had a bad cold and had this aching on my left side. It was discovered my spleen was enlarged and I had a bone marrow biopsy. I was at that time diagnosed with Myelofibrosis (MF). I went to see Dr. Richard Silver in New York and he put me on Interferon. I saw him for 5 years and then transferred to Cleveland Clinic as my insurance company was making it harder and harder for Dr. Silver to be paid. There I was under the very capable care of Dr. Ramon Tui. It was under his care that I did a trial for Jakafi. It only helped the spleen size for a couple of months, but it has kept some of the other side effects of the disease at bay. I still take 20 mg. twice daily. Also, in 2014 I had a double mastectomy.
In the spring of 2017, I was so horribly uncomfortable because by this time I looked 9 months pregnant with my spleen. I also had swollen legs and feet. I could hardly walk. I made a decision at that time to radiate the spleen to give me some relief. I was supposed to receive 10 treatments, but was stopped at 7 because my blood counts bottomed out. Hmg 6.0, Pl 5, WBC 0.8. I started with transfusions twice weekly of one platelet and two blood. I did this for several weeks and developed a horrible headache. I stopped the transfusions and my Dr. said to go home and call Hospice. He thought I had 2 weeks to 2 months to live. I was really sick, but as my spleen began to recover, my counts went up. By the fall of 2017, I was basically back to normal with the blood counts and, of course, out of Hospice. My family think I’m a miracle. But, the spleen, by December 2017 was becoming very uncomfortable again and I started radiation again January, 2018. This time I had 4 treatments and had to stop because of my blood dropping.
It has been suggested to me by two doctors to have my spleen removed and have a bone marrow transplant. But, I have read about this procedure and I know I wouldn’t survive as I am very sensitive to most of the medications they would have to give me. My current hematologist is looking for a trial I can do, but my bone marrow is nothing but fatty tissue. I have nothing there…not even fibrosis. I keep telling them my spleen is doing it all, but they won’t believe me. With no bone marrow tissue, I can’t do a trial. So, I don’t know what they are going to do with me. Anyone else have this problem? I’d love to hear what you are doing.
I know the Lord has a good plan for me and I just have to wait and see what it is. He is the “great physician”! I’m just not real patient. I haven’t felt really well for a long time.