Insurance has approved me for the colitis treatment. I should get my first dose on Wednesday. Amazing how just knowing relief is potentially coming can make you feel a little less shitty.
Pun totally intended.
This means back-to-back trips to the hospital next week, but I can deal. Just make this stop so I can sleep again and get back on the Kill Betty Juice.
The Summary.
I haven’t done one of these in a while. I’m tired, so I’m not feeling creative. It’s the colon’s fault.
The Details.
Saw my doctor and my surgeon yesterday. Saw the GI doctor today. That’s a lot of doctors in little days, two trips to Boston in two days, and my colon is waking me up multiple times a night. I need sleep.
We are all in agreement (well, not the surgeon since this is out of his area of expertise, but the rest of us) that the prednisone isn’t cutting it. So I’m going to be switched to the real hard core colitis-busting drug. Don’t ask me to name it, never mind spell it, because I’m too tired.
It has to be administered via IV (yay, more trips to Boston because they won’t do it locally!), but it should take care of the problem. Most likely after only one dose. Three is the most anyone in my situation has needed, and they will schedule me for three doses to be prepared.
It’s super potent so it comes with a lot of potent risks, including TB, lymphoma, and… melanoma. Yeah, we are aware of the irony. I’ve been assured that those risks are very minor in my situation; they tend to only occur after prolonged used of the drug. (Since it’s used to treat Crohn’s disease, for example, most people who need it take it for years, and that’s where the risk comes in.)
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.
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.
*sigh*
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.
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.
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…
The Summary.
No news is no news is purgatory. Poop is a 4-letter word.
The Details.
First, just a quick update. I had my scans last Thursday, but I still don’t have the results.
Now, the real reason for this update. Poop is a 4-letter word. So is crap, shit, merd, and probably a hundred other words for feces. In fact, feces looks suspiciously like a plural, so let’s just call it fece and throw it in the mix.
Medical professionals, however, prefer to refer to a patient’s bowels or stool. (Except my doctor, who likes to tell me it’s time for a poop talk. I guess oncologists have to get their levity somewhere.) Anyway, apparently, my doctor is concerned that my “stool” has not been fully “formed” for the past three weeks, nor has its condition improved. Actually, it’s probably getting worse. Toss in some increasing nausea (how one can think about poop constantly and not get nauseated is a legit question), and guess who gets scheduled for a colonoscopy!
Shittiest birthday present ever!
Yeah, that’s right. I turned 39 today, and my doctor gave me a colonoscopy appointment for a present. (I am totally repentant about any previous birthday disappointments, slights, or sadness.)
So that’s scheduled for tomorrow.
I’ll be in the corner with my laxative-flavored Gatorade. Oh, who am I kidding? I’ll be in the toilet with it. Please have a slice of birthday cake for me since I’m not allowed to eat solid foods.
In conclusion, Betty has become a little shit.
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 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.