Yeah, no sarcasm there. Thanks for the Obamacare and the institution of out-of-pocket maximums. Two nivolomab treatments, plus a handful (less that $100) of assorted small prescription charges, and I’d hit my out-of-pocket max for in-network expenses by February 2nd this year. Note: I hit that even before the first of my two hospital stays.
*faints*
The Summary.
Scanxiety* strikes. Not much else.
The Details.
I’ve been slacking in my updates, but there really hasn’t been much to update. On Thursday I had my latest round of scans (CT and MRI), and I should find out the results on Tuesday at my regular appointment. I haven’t had any treatment since my last set of scans in August (thanks, colitis) so this could be… interesting. It’s quite possibly a test of just how long-lasting the effects of the treatment might be.
Also on Tuesday, I might be able to resume treatment. I’m on a low enough dose of Prednisone now, so my doctor gets to decide whether I’m ready. I might not find out until Tuesday, which would be annoying.
*Thanks to Sue for sharing this term.
I just heard from my oncologist, and he disagrees with the neurologist who told me it was most likely Bell’s Palsy. My doc is 99% certain the paralysis is being caused by Betty because there’s a spot sitting near the nerve.
I’m willing to tolerate the paralysis (and occasional face spasm) for now, so we’re going ahead with the treatment as planned. If it works, it should start alleviating the symptoms in a few weeks. If it doesn’t seem to be doing that, doc might pull me off and go with the BRAF drugs.
I’m also going to be evaluated by a neuro oncologist tomorrow who will be able to help monitor the situation.
I had plans last night. Plans that involved tasty food and drinks, and Netflix with the husband. But Betty (or something, more on that in a moment) also had plans. And those won.
While making dinner, I tried to laugh at something my husband said and the left side of my mouth didn’t move. I blinked with surprise, and my left eye didn’t shut all the way. Having some familiarity with the ER, and convinced I wasn’t in imminent danger of dying, we ate dinner before leaving.
We got to the local ER around 8:30 p.m. where the staff ruled out a stroke. Unfortunately, we had to wait for them to confer with the on-call oncologist at my doctor’s office too. She wanted us to be cautious and have my MRI from last week examined by one of their hospital’s neurologists. A whole lot of back-and-forthing apparently ensued. Around 1:30 a.m., my husband went home to sleep while I had to wait for an ambulance to drive me to Boston. (I had to be transported by ambulance, which I kind of understand but which I also find ridiculous.)
The ambulance picked me up around 2:30 a.m. Nothing feels as silly as being strapped to a stretcher when the part of your body that’s actually malfunctioning is free to continue malfunctioning. Fortunately, my ambulance crew was entertaining. Plus, there’s not a lot of traffic going into Boston at that time of night.
I got to the new ER around 3:30 a.m. and was subjected to the same tests that my local hospital, as well as the ambulance crew, did. I must have squeezed a dozen people’s fingers before the dawn broke. Then I was taken to an area of the ER called Fast Track, which meant that I finally saw the neurologist a speedy 6 hours after arrival.
End result: it’s most likely not a stroke. They can’t entirely rule out that it’s the cancer pressing on the nerve, but the MRI doesn’t show that happening. Most likely, it’s Bell’s Palsy, which I understand is a catch-all term for partial facial paralysis, usually caused by an infection (which I had recently), but for which doctors really have no clue. Sometimes they give you steroids to fight the swelling and make the symptoms go away, but after checking with my oncologist, I can’t have those because it would delay me taking part in the clinical trial. If it is Bell’s Palsy, symptoms usually start to go away in about 2 weeks. If it’s the cancer, they’ll go away if the treatment works.
Basically, I spent 14-plus hours in an ER with little food or water, and almost no sleep, to leave in the same condition I went in. The husband picked me up around noon on today. Until this goes away, I will be channeling my inner pirate and rocking a lovely eye patch so my left eye stays moist.
Author’s Note: In the past 24 hours, I’ve gotten about 2 hours of interrupted sleep. Blame any typos on that.
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.
The Summary.
I can’t write the post I was going to write. We are probably tossing the kitchen sink. Waiting sucks.
The Details.
Once again, I’ve been thwarted by Betty. A couple weeks ago, my oncologist called Betty aggressive but dumb, and I was going to make a joke about Betty being frat boy joke. Of course, now I can’t because Betty might not be as dumb as we thought. I was also going to write about the really unpleasant surgery I’d agreed to that would remove the last bits of my ear and leave me with permanent hearing loss. But I can’t do that now either because while we know there has to be more of Betty left in my ear, really unpleasant surgery is no longer worth the potential benefit. I’ll explain.
The Summary.
This is not the blog post you’re looking for.
The Details.
My oncologist called yesterday evening with my scan results, which was tip-off #1 that this was not going to be a good call. My scans showed a couple very small spots in my lungs.
Apparently, spots can sometimes show up on scans for no reason, and my doctor claims he is 99% sure they are nothing but normal aberrations. But this Betty. The bitch hid 7 centimeters of tumor in my ear. My doctor can be optimistic, but I know what we’re dealing with.
As of now, the spots are too small to biopsy. Obviously, if it turns out that Betty has finally learned to travel, things change. The current treatment plans are now on hold because of it. We wait and I’ll get scanned again in a few weeks. I’m going to see the doctor on Monday to discuss more.
And tip-off #2 that things are bad, despite my doc’s 99% optimism? It went like this:
Doc: I see you have an appointment with Surgeon on Tuesday. Can you come down to meet with us both on Monday instead?
Me (thinking, hell yes, I’ll have to make that work): Sure.
Doc: I can do anytime after two. What works best for you?
To me, that speaks as loudly to BAD as the time my dermatologist gave me her personal cell number.