Tag Archives: medication

Still Churning

The prednisone-induced fog I’m in makes it hard to remember to keep up with this blog. Anyway, there hasn’t been much to report.

As of last week, I was on track to be weaned off the prednisone and hopefully resume treatment next week (10/13). But the lower dose, again, worsened my side effects. So, again, my dose has been raised slightly in the hopes of things stabilizing if nothing else. I have an appointment to see a GI doc in a couple weeks since the inflammation isn’t going away as easily as anticipated. Depending on how things go at my regular oncology appointment next week, that appointment could be moved up. Until then, it seems I’m in an unpleasant holding pattern.

I’d really like to get off these drugs. Really. Any day now.

As The Colon Churns

Just a brief update and a rant.

So the higher dose of prednisone didn’t make a difference. My nurse practitioner (NP) thinks raising it any higher, therefore, is also unlikely to help. And especially since raising it some more comes with its own risks (and I’m already experiencing minor side effects like elevated blood sugar from the current dose), she’s started lowering the dose again.

Along with the lowering, I’m trying some OTC drugs with it. We’re getting creative here, just looking for ways to manage the symptoms. As a researcher, I like doing experiments. I’m less enamored of doing them on my intestines, but so far the NP’s ideas might be helping a little, which is better than nothing.

Now for the rant. About insurance, what else? I run out of prednisone on Monday, but I have one refill left. Only insurance refused to fill it because I went through the first prescription too quickly. Well, yes, that’s because my dose was raised. But insurance doesn’t care. They made my doctor send in a completely new prescription.

Only that wasn’t good enough for them either. They STILL insisted it was too early for me to obtain more because that’s not what they originally approved, never mind what the doctor wanted. Apparently, doctors aren’t allowed to change their minds or adjust medications as necessary.

Finally, this was straightened out such that the pharmacy will be allowed to fill my new prescription on Sunday, the day before I run out. If they’d had to wait another day or two, I’m not sure what we could have done, but prednisone is apparently not a drug you can just cut off. Well, you can, but it’s not medically advisable. And we all know how much insurance cares about that.


No End to the Colitis

And the drugs make me more okay with that than I should be.

After two weeks on lower than the usually-given doses of prednisone, I’m feeling much better. My liver is mostly back to normal too. Unfortunately, my intestines are not. Because the lower dose hasn’t cleared up the colitis, on Tuesday my doctor decided it was time to bump me up to the full dose. (He was being optimistic and hoped I could get away without it.)

So, as of yesterday, I’m steroided-up, plus taking pills to control the side effects of that (pills to decrease the strength of my stomach acid and massive antibiotics). Hopefully, this will do the trick quickly.

In the meantime, I’m very calm and chill about all of this. Apparently, I’m among the minority of people who have an unusual reaction to prednisone. For most people, it winds them up, heightens anxiety, and provides lots of energy. For me? I’m super mellow, unfazed by pretty much everything to the point where I don’t feel safe driving long distances or in heavy traffic. It’s rather a pity because I was warned prednisone would make me want to scrub the house from top to bottom, and I was looking forward to the motivation. Instead, I’m smiling at dust bunnies and thinking how cute they are. This is probably better for my mental health because otherwise I’d be stressed about the colitis.

Then Versus Now

Me, before treatment began: I don’t care how bad the side effects get, I can deal. I am NOT taking prednisone. I’m tough and can suffer through anything.

Me, yesterday: You’re prescribing me prednisone? Oh, thank goodness. Give me that stuff now!

So, doc’s office called yesterday afternoon. My biopsy results were back earlier than expected, and they showed mild inflammation of the lower intestine and liver that’s consistent with my treatment. Yesterday evening, I picked up a prescription for what I think is a pretty low dose of prednisone. (If you don’t know what prednisone is, it’s a steroid frequently given to cancer patients (and many others) that acts as an anti-inflammatory, but it packs a nasty punch of its own with regard to side effects).

I took my first dose last night and my second this morning, and I’m already in less pain. So yay. Doc’s office will call to check up on me Tuesday, and they want me to come in and see them on Wednesday. By that time, they assure me I should be feeling much better and, thanks to the prednisone, will probably want to eat everything in sight. Ironic for a drug that includes nausea among its side effects.

Veni Vidi Vici Betty

I came. I saw. I kicked the bitch’s ass.

Or rather, my doctor, the treatment, and my super-powered/hyper-aggressive/attack-everything-it-sees immune system did.

*punches air* *stomps on Betty’s remains* *dances over her dying corpse*

Okay, enough hyperbole. Here’s what really happened, the good news and the bad…

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What’s Next

IV bag Thursday marked my last of the ippi/nivo infusions. My last super long day spent hooked up to an IV pump. Yay! Now if my colon will only survive that latest dose…

I get CT scans and a brain MRI on August 27th. My next appointment after that is Septtember 1. If my scans show tumor shrinkage, or even tumor stasis (meaning the tumors are holding steady), I get put on just the one, newer drug (nivo) starting that day. This moves me into the second phase of the trial, and it requires infusions every other week for about a year because it’s so new they don’t know how long to give it for. Odds are 50% for shrinkage and higher (dunno how much higher) for stasis.

If it doesn’t look like the drugs have helped, I’m probably going to be pulled off them. At that point, I’m guessing they’ll put me on the BRAF drugs. Those have 90% odds of shrinking the tumors, but they only work short term so they’re the last resort. Basically, they buy time.

In related news, we found out a little more about why the study drugs take so damn long to be processed by the pharmacy. They require a million sign-offs, including someone from the drug company itself. So the drugs can just be sitting around for a while, waiting for someone’s electronic signature. Frustrating.

I Challenged Betty

I lost.

This can only be my fault. At lunch yesterday, while talking about how much Betty sucks, I said something along the lines of, “So far, the side effects haven’t been too bad. Pretty much anything has been better than having my face partially paralyzed.”

Unknown to me, Betty said, “Challenge accepted, bitch.”

At this point, I don’t know whether it’s an intestinal virus or side effects that are causing my distress, but I am distressed. I was supposed to have my last ippi/nivo treatment today, and it didn’t happen. Doc wants to be very cautious since colitis is a possible, serious side effect (most likely caused by the ippi).

So I wait. I’m tentatively scheduled to make up my treatment on Thursday, but that will depend on how things go tomorrow. It’s possible treatment could be pushed to next week, or that I’ll end up skipping this last one.

I am distressed. I am displeased. And I am disgusted. Because ugh.

The Situation, 7/1/15

The Summary.
The eyes have it. Another reason to be hopeful. And it was another looooong day in Boston.

The Details.
I got my second dose of the Kill Betty Juice yesterday in another epically long trip to Boston. We left the house at 7:30 a.m., got home around 10:30 p.m. I’m a little tired.

Marvelous Ginormous Hospital that shall not be named has a terrible pharmacy system that can’t seem to handle requests in a timely fashion. I arrived for my infusion at 1. I didn’t get my drugs until 3:30, and that was after the nurse was on the phone with the pharmacy demanding to know where the drugs were. If you’ll recall, the drugs take 3 hours to administer, plus time to flush the line when the last one finishes. So I was stuck there for almost 6 hours.

On the plus side, I had time to read an entire novel. On the downside, I was stuck in a windowless infusion room so long I had time to read an entire novel.

Prior to the infusion, I also had several appointments.

Oncologist’s office wants me to see an ophthalmologist (a word I could not spell to save my life, thank you spellcheck) about my permanently bloodshot eyes.

I also got some hopeful news from the surgeon who was checking up on my leaking issue (which, if you recall, went away on its own). He said the lump above my ear is completely gone. He believed this lump was tumor based on feel and my latest CT scans, so if he’s right, that’s a good sign that the drugs are working. Add it to my face returning to normal and my pain disappearing, and… fingers crossed.

Just not too tightly because that’s asking for trouble.

Sides: A Tale of Faces and Effects

First the bad side. It appears side effects have caught up to me. At least, I think that’s what’s happening. Starting Tuesday, my throat (glands) have felt sore, and I’ve been experiencing quite a bit of joint pain. My eyes are also bloodshot for no apparent reason (i.e., they aren’t itchy or irritated, so it doesn’t seem to be allergies, and my vision isn’t affected).

I did get some blood work done yesterday, and my local doc felt up my glands and lymph nodes and declared them not swollen. So it looks like this is just pain and it might be here to stay. Oncologist’s office doesn’t seem too concerned as long as my eyes don’t get worse.

Now the good side. My face is on the move again! It’s not fully back to normal yet, but I can smile, blink my left eye, and eat without pain among other things. I thought I’d started noticing improvement last week, but it was so subtle I doubted myself. But it can’t be doubted anymore. Blinking is blinking, and I could definitely NOT blink my left eye last week.

So the question becomes: what does that mean? I don’t know. Everything I’ve read about Bell’s Palsy suggests it takes much longer to go away. If it’s the cancer, like my oncologist believed, then it’s possible my recovery is a sign the treatment is working. He did say it was possible I could start seeing improvement in as fast as a week, which this was.

Is it time to get excited? Probably not, but it’s nice to have something finally go right. And the ability to smile about it.

The Situation, 6/10/15

The Summary.
The first batch of Kill Betty Juice has been administered. My ear is leaking. Again.

The Details.
We were GO for the study yesterday, and I received my first set of infusions. It took… long. Nivo takes 1 hour, then there’s a half hour saline flush, then Ippi takes 1.5 hours. We arrived at the infusion center at 2:30, it took until 3:30 for the drugs to arrive, and I didn’t get removed from the IV until a little after 7 p.m. So much our worrying about hitting rush hour traffic on the way home.

No side effects yet, which is normal. But my ear is acting up.

On the way home (about two hours after the infusions ended because we had dinner before heading out), I started experiencing horrible nerve pain in my ear. When I woke up this morning, my ear was clogged and more fluid was leaking out (and still is). I’m sure it’s just a coincidence, but I’m waiting to hear back from the surgeon who treated the infection in April and the research nurse just in case. At least the pain is gone again for now.

Scream with: Gah!