I haven't written for a long time now. That is partly because my myelofibrosis has been chronic and not really in the forefront of my mind. About once a year I would be concerned about my blood counts.
Last January Dr. Gerds was concerned as well because my WBC was up in the high sixties and my spleen was growing again. He had a bone marrow biopsy done along with extra blood work. But it came back negative. Pretty much the same old thing. No sign of AML starting to develop! (Praise the Lord!) We talked about trying one of several trials that he was doing, but it seemed to me that I was borrowing trouble - more blood draws, daily record keeping, more BMBs, and side effects from the drugs - without any idea if it would help my situation. I decided to wait.
Since then my wife and I have been buying a new house in a new town, preparing our old house for sale and our new house to live in. I have been working on plumbing, electric, and carpentry. And I'm not done yet. It has been a tremendously busy time. It has been an extreme challenge. And in the midst of moving my spleen has been marching on.
Dr. Trehan told me it was very big again. Dr. Gerds measured it at 18 cm and noted that it was past the midline of my body. (It hasn't affected my eating... I eat too much no matter what.) My WBC has been up to 75 and over twice, but mostly ranges from the upper 50's into the upper 60's. I was concerned two months ago when my HGB was down to 10.8 and my platelets were at 102. But they sprang back the following month.
Constitutional symptoms have increased too. I have occasional night sweats, and frequent pruritus. My fatigue is worse again too.
So, Dr. Gerds and I have decided on a change. Inrebic (Fedratinib) was approved by the FDA in mid-August. I will start taking it this coming Tuesday, Sept. 24.
Tune in here to read about my experiences with this new medication!
Last January Dr. Gerds was concerned as well because my WBC was up in the high sixties and my spleen was growing again. He had a bone marrow biopsy done along with extra blood work. But it came back negative. Pretty much the same old thing. No sign of AML starting to develop! (Praise the Lord!) We talked about trying one of several trials that he was doing, but it seemed to me that I was borrowing trouble - more blood draws, daily record keeping, more BMBs, and side effects from the drugs - without any idea if it would help my situation. I decided to wait.
Since then my wife and I have been buying a new house in a new town, preparing our old house for sale and our new house to live in. I have been working on plumbing, electric, and carpentry. And I'm not done yet. It has been a tremendously busy time. It has been an extreme challenge. And in the midst of moving my spleen has been marching on.
Dr. Trehan told me it was very big again. Dr. Gerds measured it at 18 cm and noted that it was past the midline of my body. (It hasn't affected my eating... I eat too much no matter what.) My WBC has been up to 75 and over twice, but mostly ranges from the upper 50's into the upper 60's. I was concerned two months ago when my HGB was down to 10.8 and my platelets were at 102. But they sprang back the following month.
Constitutional symptoms have increased too. I have occasional night sweats, and frequent pruritus. My fatigue is worse again too.
So, Dr. Gerds and I have decided on a change. Inrebic (Fedratinib) was approved by the FDA in mid-August. I will start taking it this coming Tuesday, Sept. 24.
Tune in here to read about my experiences with this new medication!
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