My Dose Changes Tomorrow
So far I’ve been receiving 9 mcg/day of Blinatumomab.  Tomorrow my dose will be increased to 28 mcg/day.  This is the standard protocol for Blinatumomab.  If all goes well, all my future doses will be 28 mcg/day, even when I start my 2nd cycle.  The 9 mcg dose it to allow my body to adjust and make sure I don’t have any bad side effects.  While my dose is tripling, my body should be somewhat used to the drug now so the increase shouldn’t be accompanied by any new side effects.  Of course some people did experience new side effects, but they were in the minority.  And since I’m not a minority, I guess I should be ok.

7 Days Down, 2 To Go
Today was my 7th day of Blinatumomab.  I need to be observed for two days on the 28 mcg dose and then I’ll be allowed to go home.  I’m getting a bit stir crazy at this point.  I’m usually in my room for 23.5 hours of the day, which incidentally is more time in a single room than the federal prisoners at the Supermax spend (granted, I can at least get out of my “cell” anytime I want).  I’m not as tired anymore, which means I’m not taking naps.  While I don’t feel 100%, I do feel pretty good all things considered.  I still have some headaches, but those are easily managed with the Oxycontin.  I’m definitely ready to go home and today Home Care stopped by to educate Lindsey and I on what will happen.

Continue reading Taking It Up a Notch

A Weekend Update
The weekend wasn’t much fun.  I had a fever off and on and was pretty tired the whole time.  I also had low blood pressure on Sunday, which could be a sign of Cytokine Release Syndrome.  Thankfully the BP came back up with fluids.  Along with the low BP, my heart rate got up to around 130 for awhile, even though I was resting in bed.  I also had some headaches and nausea.  All these were managed with medications.  Granted, the meds could be part of the reason I was so tired.  I was getting Oxycontin, Ativan, and Phenergan.  Not exactly a cocktail of uppers.

Today Has Been Better
Today has been better.  Not great, but better.  I can tell it’s better simply because I got out of bed to do something besides pee.  After waking up this morning, I sat in the chair in my room for about an hour.  Probably doesn’t seem like that big of deal, but a change of scenery was nice.  I mean, I’m still staring at the same 4 walls of my room, but I’m doing so from a different angle.  It’s the little things that help you hold on to your sanity.

Speaking of rooms, I haven’t been out of mine since Friday.  Just not enough energy to get up and walk around a bit.  Hopefully some of that will return.  We’re still not sure if I’ll adapt to the medication and have reduced side effects or if I will continue to have side effects on and off over the 28 day administration.  Apparently both happen.  I’ll be ok with the side effects I’ve had so far as long as we can manage them at home.  I don’t really want to be in a situation where we are figuring out if we need to call someone or if we don’t.  To Dr. Cripe’s credit, he gave me his personal cell phone to text him if I have any questions in the hospital or out.  He even texted me on Sunday to see how I was.  I love Larry 🙂

Continue reading Coming Up for Air

Just Kidding, This Isn’t Fun
My fever has been coming and going.  Highest was 39.1 (102.4).  I’m also extremely tired.  I’ve been in bed all day and sleeping for most of that.  I would build up enough energy to go pee and then lay back down.  Overall though, the most severe side effects are no where to be seen.  I definitely feel like I have flu symptoms.  My hope is they get better over time, because 28 days of this won’t be a good time.

A Duck Dynasty Prayer
Thank you God for no severe side effects.  Thank you that I appear to be on track clinically for what they would expect.  Please cover me in your grace and comfort.  Thank you for another day.