Tag Archives: never tell me the odds

Scan Update

Yeah, it’s been a while. I know. But in the world of cancer, no news is good news. I mean, if I’d ended up in the hospital again, I’d have been posting like crazy to pass the time.

So, good news! Scans are unchanged since March. Betty is either dead or still being held at bay by my bad-ass immune system. Given the elapsed time, doc is “very confident” that this bodes well for the future. Unless things start changing for the worse, I’ll continue to get scanned every three months for the next couple years.

I might still be dealing with the aftereffects of the immunetherapy in the form of inflamed sinuses, but there’s a little debate as to whether the treatment can fairly be blamed. My ear surgeon (yes, my ear surgeon has been treating my inflamed nose, I just go with it) is going to consult the nose docs to see what they have to say now. Things had gotten better and are now on the downturn again. It could be as simple as I’ve been on nasal steroids for too long.

Anyway, it’s annoying, but it’s not cancer. And that’s really what life comes down to: cancer or not cancer. Anything that’s not cancer is tolerable (or is with a little a lorazepam).

In related news, happy birthday, Mom!

The Situation, 3/16/16

The Summary.
Still fighting and kicking butt. More scans to come. Stuck in a holding pattern.

The Details.
To quote my oncologist, my “scans show no signs of anything that looks like melanoma.” Break out the party hats!

No wait, don’t. Not only is that begging for trouble, it might be premature. While that is the strongest positive language my doc has used to describe the results yet (if you’ll recall, previously he’s always talked about remaining specks), I’m still dealing with ear and head pain. So, next week, I’m scheduled to get a brain MRI, assuming insurance approves it that quickly. If not, we’ll push it back.

Doc doesn’t think it’s likely something will show up on the MRI that the CT failed to uncover, but as usual, we want to be cautious. Just as my surgeon has theories about what non-cancerous issues could be causing the pain, so does he. In this case, he thinks it could be possibly be the nivo making my skin sensitive/allergic to my glasses. Strange new allergies are not an uncommon reaction to these immunotherapy drugs.

Assuming the MRI doesn’t show anything concerning or surprising, I’m moving into a holding pattern. Since I’m off the treatment, all they’re going to do is monitor me. Doc reiterates that the people who have the worst side effects and fastest responses, like I did, tend to show the best long term results. But ultimately, they can’t say for sure which drug it is (or whether it was the combo) that seems to be working. And if it’s the nivo especially, they can’t say how long the effects will last because the drug is too new.

In sum, let’s hope this blog becomes a lot more boring in the future.

Still Kicking and Kicking Ass

Scanxiety was for naught! Scans came back even better than last time. No sign of tumor around my ear, and “infinitesimally” small spots in my lungs. So small, it’s hard to say whether they’re tumor.

According to doc, people who show an immune response like this tend to keep going until the tumor(s) are gone. So no guarantees, but it’s a good sign. In fact, he suggested I might not even need the second round of treatment. But I’m going to get it anyway to be safe. It’s just not something we need to rush. He wants to get me off the prednisone first, so that’s what we’re working on.

And on that note… Happy Thanksgiving!

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…

Continue reading →

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.

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.

The Situation, 5/26/15

The Summary.
We’ve reached a milestone. That’s bad. Things are changing again.

The Details.
I don’t know why I bother to post things like “this is the plan!” or “this is the new plan.” Because then I have to make more posts, like this one, about the new, new plan.

The spots in my lungs that could have been aberrations do not appear to be. There are more spots than there were six weeks ago, and the older ones are slightly larger. Welcome to Stage IV. Sometimes it’s not good to graduate.

Because of that, radiation is pretty much off the table. Doc has also decided to hold off on giving me the BRAF drugs (which are sitting in my fridge) because while they shrink tumors, they only have a limited working window. He’s looking for something more permanent. We might end up using them, but only if other measures don’t work.

Those other measures are two types of immunotherapies. For shorthand, one will be called Ippy and the other PD1. Both work at different stages with the immune system. Ippy has been around a long time and has a 20-25% success rate. PD1 was only approved a few months ago, so it doesn’t have long term success, but its short term success is in the 30-40% range. The hospital is also currently participating in a clinical trial that combines the two, and so far that has about a 50% success rate (short term obviously).

Both Ippy and PD1 are administered via IV, but at least unlike interferon treatment, it’s only every other week (PD1) or once every three weeks (Ippy). Ippy is four doses over 12 weeks. PD1, well, they have no idea how long to give it for. It’s too new.

Both also have side effects. Naturally. They work on the immune system, so the side effects are like autoimmune issues. About 20% of people get fairly severe ones. In general though, if I’m not one of the 20%, they should be easy enough to tolerate and not affect things like work. As always, there are drugs to mitigate the side effects that come with their own side effects… Joy.

I’m waiting to find out if 1) I qualify for the clinical trial (my HepC, even though I’m virus-free, might preclude me), and if I don’t qualify, then 2) whether my doctor can convince insurance to cover both treatments at once. If not, he’ll probably give me the treatments back-to-back, starting with the Ippy. There’s also a more surgery first wild card in there, but that seems unlikely.

So yeah. Meanwhile, my ear is being a pain again. I don’t know whether nerves are just reconnecting or whether Betty has regrown enough to attack them. I do know it’s time to attack the bitch. Again.