Brought to You by the Letter B (Bieber and Blinatumomab) Well things changed over the last 2 hours. My temp rose to 37.2, then 37.3, then took a jump to 38.3 (100 F). At that point we started the neutropenic fever protocol. The fever is most likely due to the Blinatumomab, but they just want to be sure there is no infection. So we did Cultures x2, gave tylenol for the fever and I’m currently receiving Cefapime (antibiotic). I’ll also get other strong antibiotics until the cultures are confirmed to be negative in 2 days. No chills or any other symptoms. Just the Bieber fever. Fever occurred in up to 70% of patients (depending on the study) so this is quite normal. Also the side effects have no impact on the effectiveness of Blinatumomab. As long as I keep receiving the drug, it will keep working.
Tired
I am started to feel a bit more tired. Insomnia can be a side effect of Blinatumomab and I also had 20mg IV of a steroid this morning. It will be interesting to see if I fall asleep easily or not. I have my trusty trazadone to take, but maybe I’ll ask for a Lorazepam chaser for good measure. Night all!
I have a pump dedicated to the Blinatumomab and this is taped over the buttons so that no one jacks with it.
Is That Your Blood Pressure, or Are You Just Happy to See Me?
I’m about 11 hours into my Blinatumomab administration and all the serious side effects are non existent. About an hour into the administration, my BP was up. Usually I’m borderline hypertensive around 140/80. However the monitor read 175/96. I was given and IV med and the BP is back down now. Dr. Cripe doesn’t think it will be an issue. High BP runs in the family (thanks mom and dad) and I’ve been on anti-hypertensives before. I might go on them again, we’ll see.
Day 2 and Day 7
I have a rock star team taking care of me. Today’s main concern was any hypersensitivity to the drug (side effects that would appear right away). So far I seem to be on track to not have those. There is always a potential for side effects to show up, but most apparently show on day 2 and day 7. Tomorrow is day 2, so we’ll see what happens. Day 7 will be next Wednesday. Hopefully all goes well.
View from my room at Hotel Simon. We’re thankful I have a B room 🙂
Admission and Stuff
I’m admitted and all settled in. It’s interesting, because I just got a PICC a month ago, but when I got another one today, they had some new technology to use. Typically when you get a PICC, they take an x-ray afterwards to confirm the line is in the correct proximity to your heart. Today they used a probe and some leads to confirm the placement. As they insert the probe, it measures blood flow and my heart rhythm. The computer then tells them where the “bulls eye” is. Basically the bulls eye is the best place for the tip of the PICC line to be. My bulls eye was 5 cm shorter than where they would have placed it. It’s interesting that before this technology, they would have measure and placed my PICC 5 cm further in. They say there is no big difference in the effectiveness. The main use of this technology will be to eliminate the x-ray at the end. This will save money and save patients from being exposed to radiation.
No Side Effects So Far
So far I’ve had zero side effects. That might be because I haven’t received the blinatumomab yet. But I’m not doctor, so who knows. They didn’t want to start the med in the afternoon. They will begin administering it tomorrow at 8:00 am. They are waiting until tomorrow so that the full team can be here to monitor me and they have a full day of people here in case something is needed. I’m really thinking/hoping this will be a non-event. However since the drug has some serious side effects and has to be administered in a very specific way, they wanted to start early in the morning, as opposed to the afternoon. So today has kind of been a false start. I’m not even hooked up to a pump. I’ve just been hanging out on the unit and enjoying a day of feeling well before the fun begins.
Like a Virgin
I’ve been told that tomorrow morning, I will be the first person in Indiana to receive Blinatumomab. As one of the nurses put it, I’m the Blinatumomab virgin. Now there is some debate as to whether or not a patient got Blinatumomab while at Riley. But I’m most definitely the first Simon Cancer Center patient to be getting it. I think that’s part of the cautious approach. Since it hasn’t been given here before, everyone is double checking procedures and planning every little detail. I even have a separate Alaris pump solely for the Blinatumomab. Tomorrow they will put a sign on it to the effect of “DO NOT TOUCH”. That way no one accidentally stops my infusion 🙂
Long Bone Pain
I’ve been having some pain in my lower legs. It’s like an aching sensation in the bone. I took some Oxycontin but it didn’t really help. The pain is caused by leukemia. The leukemia blasts fill my bone marrow to capacity and the marrow expands to fit more cells. Since the bone marrow is expanding, it causes pain in the bone. It’s expected and there isn’t much to do about it. Well, cure the leukemia and the pain will go away.
Speaking of Oxycontin
When I was admitted for neutropenic fever, I spent the first day of admission laying on the couch in my room. It was comfortable and I wanted to be somewhere other than the bed. Unfortunately I must have laid kind of funny, because I had neck pain the very next day. I did exercises and used hot packs, but the pain still persisted. I told the medical team about it and they said the best thing to take was Tylenol. The problem though is Tylenol will hide a fever and we needed to know if I was getting fevers or not. So since Tylenol wasn’t an option, we went with the next best thing. Which of course is Oxycontin. So yes, I got Oxycontin for a little neck pain. I still have a lot left and am running a special of $4.99 a pill if you are interested. Got to pay those bills somehow.
A Duck Dynasty Prayer
Father God, I am ready to start and I place this treatment in your hands. Please be with my medical team tomorrow. I pray for mild side effects and for the drug to be effective. Let the drug kill my B cells. Please let me achieve remission. All these things I ask in your name. Thank you for another day.
Thank You For Another Day 