HBG: 14.8
PLT: 145
WBC: 5.63
ANC: 3.73
After much to-do with the insurance company and pharmacy, I finally started Jakafi. And it seems to be helping. I started on a dose of 5mg in the morning and 5mg at night, and my fingers feel somewhat better. The doctors have decided to increase the dose to 10mg AM and 10mg PM to see if it can make me feel MUCH better. It took literally four phone calls back and forth to the pharmacy, conferencing in my insurance company, and back to the doctor to actually get that prescription filled, and I went without the Jakafi for four days in the mean time. And my left ankle started hurting so badly, that it felt like I was injured. I've been back on the higher dose for four days now, and my ankle still feels like it's sprained. The joint is sore to the touch, and sensitive to movement, but I *think* it is starting to get better, because a few days ago, I could barely walk on it without wincing in pain. My fingers have been a little stiff too, so I'm hoping it's just a matter of the drug making its way back in my system, and hoping that my joint issues are not progressing.
I'm still on prednisone, and I hate it. My dosage was reduced from 20mg to 15mg at my appointment last week, but I still am feeling prednisone side effects pretty hard. It makes me literally feel like I'm starving. In the middle of the night. I wake up out of a dead sleep, pantry eat something - usually a handful of trail mix, or chocolate chips, or a spoon of peanut butter, pound an entire diet coke in about 3 minutes - and then go back to bed. It's absolutely ridiculous, and super counter-productive to my whole trying to lose weight mission. I've started putting a banana or an apple on the shelf in the pantry, and pre-tracking my midnight snack into my daily calories, but the hunger will not be assuaged by fruit.
The sleep is still fucked up too. Maybe improving a little bit, since I rarely lay awake for hours, but I do usually wake up at 4-something AM, and lay there til what I deem is a decent hour to get up, which in my world is 5 AM. I'm only sleeping about 6ish hours a night, and I feel tired all of the time.
And my face. Oh, my poor puffy face. I'm growing some very floofy, odd colored hair, but even that exciting milestone is eclipsed by the size of my round face.
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| What's your name, little boy? |
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| Fat Face Mcgee'n it |
Sometimes I feel like I'm not making much progress, because I'm still taking most of the medications that I was taking when I was released from the hospital (minus the IVIG infusions). Some of the dosages have been reduced, but at almost seven months post transplant I am still on:
Noxafil
Atovaquone
Acyclovir
Pantoprazole
Magnesium Protein
Tacrolimus
Prednisone
Vitamin D
Jakafi
I also am still traveling to UCLA to see the doctor every two weeks, as my blood counts still require close monitoring (especially on Jakafi, as it can cause lowered blood counts) and my symptoms are being evaluated, and my medications are constantly being adjusted. The doctors tell me that I am doing incredibly well, which makes me feel very sorry for the other transplant patients that they see that aren't, because I don't feel incredibly well. I can only imagine how they must feel.
RBell - I'm a CMLer and have tried before to join this to leave a comment, but I'm not computer-savvy, so I failed. I have followed your story avidly - someone on the LLS forum mentioned it - as I've always been curious about a transplanter's experience. So many times I have wanted to reach out and hug you and give you encouragement!
ReplyDeleteIn my past I dealt with the prednisone effects, and then of course, on Gleevec I got the toad eyes and puffy face as well. My hair, on Sprycel, might as well be gone as it's so different and useless. So, I know how distressing appearance is, and how much nobody in the medical world gives a shit about it. I don't know what you know, but I have a good feeling the Jakafi is going to get a handle on the pain, and when you taper down and get off the prednisone your real face is going to reappear and the weight will come off.
I know it's not comparable to what you're enduring, but it has taken me 10 years of CML to finally understand that expectations are not helpful to my happiness. That the future is completely unpredictable and uncontrollable. That I have to find my happiness in the absolute here and now. It is only a shift in point of view, but it has made a big difference to me. My world has become small by others' standards, but I am happy for the things I have in it, that I can do and see and feel. I suffer no fools, don't care about public opinion, don't do anything I don't want to do. There's more I could say, but I won't natter on. The takeaway is: be wary of your expectations as a possible source of unhappiness. I expected my triple fractured ankle would stop swelling up after 6 months, but when I talked to a girl with the same fracture in the waiting room one day, I realized it goes on for at least a year. Then I relaxed about it - still didn't like it! - and it went away at about 16 months. I hope this helps and doesn't make you roll your eyes.