It is time for another update. I just got home from my monthly visit with oncology. As usual I got my blood drawn for stat results and headed to Oncology for my appointment. This time I had several questions and things I wanted to discuss with my doctor. We already knew that I am Iron deficient, most likely from blood draws but the last month has been difficult to say the least. I have been tired, very tired so tired in fact that if I am sitting idle for too long I WILL fall asleep. So tired I have been going to bed anywhere between 8 and 10pm, then I still cannot get up in the morning without a fight to stay awake. I have a lot to do during the day at work and then more when I get home and farming season has not even started. I cant be like this, I need to be able to stay awake. So this visit I wanted to talk to my doctor about that and was laser focused waiting for my name to be called, only to, fall asleep. I woke up shortly before they called my name to go back.
After I first sat down in the office I asked the doctor if they tested my iron and what the level was. He said they didn't test for it this time because they know it was low, then he asked me why. I explained to him my overall exhaustion. That I go to bed early and fight to wake up, that I have not just little bits of energy but none. We talked for a bit and I asked if I should go back on an iron supplement and he said no. He said we should do a blood draw but because I feel so bad he wanted to skip it this time.
Then we started talking about other medications again. The two medications he was looking at was Hydroxyurea and Ruxolitnib. His concern with the Hydroxyurea was that I am young and have a family and am working on increasing that family Hydroxyurea is a big no no for pregnant or breastfeeding women and even when you get off of it as a male they say wait at least a year before trying unprotected intercourse. As Hydroxyurea can have adverse birth defects associated with it. Since I have a pregnant female in the house (who wants more children), to be quite honest I don't want the stuff here at all. The doc was more in favor of the Ruxolitnib anyway which by the way also is used to treat some forms of male baldness, kind of unrelated but I found that pretty interesting. In talking about Ruxolitnib and the side effects for a bit, my doctor decided that he would try to get a prescription filled for it and we can give it a try. I say try because apparently you have to fail (side effects are worse than the symptoms) with Hydroxyurea first in order to switch to Ruxolitnib. So if the pharmacy ok's the reasons for doing it over Hydroxyurea then I will be starting that.
As I mentioned in a previous post I don't have a whole lot of things that I am afraid of. I don't like wind, watching microbursts growing up made high winds one of my greatest fears. Like watch a grown man cower in a bathtub kind of scared. The next would probably be not being able to provide for my family. Followed by cancer and chemo, but this drug is not your traditional chemo drug. It is a JAK inhibitor fro what we discussed and what I am learning. I am currently researching more about it so I am hoping it can help and make life a little easier and possibly less sleepy. Oh and my hair might maybe stop thinning up top?
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.
Today marked my monthly visit with oncology, Today we start a new journey in this fight.
ASU, Mayo Clinic and University of TX are looking for MPN Patients to participate in a new study using yoga
Welcome to the new MPN Journal site.
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