I said that I would make an update after my last doctor visit but time has not allowed. Here it is a little bit later but if you have been following along recently I was prescribed Jakafi: Ruxolitnib. This last appointment was the first blood tests since being prescribed.
Lets back up a bit, on the visit that I was prescribed Jakafi, my levels were high but due to the fatigue my doctor decided not to pull blood. He wanted to get me going on the medication and see where that took me. In January my HCT with phlebotomy was 48.9, RBC was 6.4, WBC was 6.2, & PLT was in the 660K range. In February, with phlebotomy my levels HCT was 45.5, RBC was 6.0, WBC was 6.1 and PLT was in the 600k range. February's appointment did not yield a phlebotomy, as previously mentioned, although the doctor wanted to do one he opted to wait and see what the new medication would do without it.
March appointment came and I went to do my blood draw then see my doctor. He felt around a bit, checking for enlarged spleen, the standard check. Then went to the computer to read the results. To my relief he said "Well the medication is working." Looking at my levels from the March blood draw, HCT was 40.9, RBC was 5.41, WBC was 5.8 and my PLT was at 575. So my levels are going down.
He asked how I felt and I replied that I was still tired. He advised that the iron deficiency is what was causing that. I told him that the only side effect of the medication that I have noticed so far is that it makes me a bit gassy. He said to try to take the medication with a meal and see how that does. The evening dose is always with a mean, I can't say the same for morning.
He asked if I was open to a little bit of a test or experiment that might help with the fatigue. Of course I said yes. He said since the Jakafi is working well, he wanted to try to put me on the iron supplement for another month. Only one a day, no more. Then see how the combination of the Jakafi and Iron does. If it raises my HCT to much then no more iron, but if my levels stay in range then we can continue iron., hopefully helping get me some more energy.
So for the past two weeks I have been on both Jakafi and Iron, I might notice some difference in energy but it's not much. I am measuring my energy depletion in work days. Monday to Wednesday I am ok for the most part during the work day, evenings are pretty lazy. Although busy Mondays kill my energy pretty quick and Tuesday can be rough in the morning. Thursday, I feel it pretty good, mornings take more to get going. By about lunchtime I can get moving pretty good. Then about 4pm I am tired again. Friday is a fight all the way through, fight to get up, fight to stay motivated, finish the work day and go home, piddle around, go to bed. Weekends, I don't measure much as I have been having lazy weekends. That is all about to change with farming season though, so much prep work to do and then so much more work to do from there.
I will keep everyone updated. Check back with me soon for another update.
Other MPN Resources.
Denial, Anger. Bargaining, Sadness and Acceptance, My stages of grief realized.
Found this NCCN Guideline for MPNs today. I think it is a pretty good resource.
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ASU, Mayo Clinic and University of TX are looking for MPN Patients to participate in a new study using yoga
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