That’s right. Assuming nothing funky shows up in my tests next week, I’m going to be a lab rat in the clinical trial.
First, I have to prove I can run a maze of blood tests, get an EKG, and suffer through a brain MRI. And, you know, sign a very long consent form that lists all the myriad ways these drugs are going to screw me up. I think the tests are just about establishing baselines (and proving I’m not pregnant), so I’m not too worried.
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.
I’m not sure how well this will go over with some people, but I’ve wanted to do it for a long time.
All things considered, there’s no time like the present. Especially when there’s a chance my hair might all fall out again soon.
The Summary.
I can hear again. My blood is still not lethal. Insurance sucks as usual.
The Details.
The good news first. My three-month HepC virus check came back all clear. So I’m still down one lethal disease. My liver functions are all normal too.
I also had the wick removed from my ear, and the surgeon said the inflammation has cleared up. I can hear again, which should make the husband happy.
And now your semi-regular rant about “health” insurance. The bastards decided the scans that I was supposed to have today were too near my last set, so they denied them. I found out two hours before I was supposed to have them. Gee, thanks. If I hadn’t needed to go to Boston to see the surgeon too, I’d be even more furious.
They’ve been rescheduled for next week, giving Betty more time to regroup. I think they’re in league with her. On that thought, could attacking an insurance company be considered self defense if you suspect they’re trying to wait out your death?
Complaining on the blog must have done the trick. Doc’s office called yesterday, and my CT scan plus follow-up appointment have been scheduled for the week of May 11th.
I have no important updates yet. I’ve called my oncologist’s office three times in the last week trying to find out what’s going, and my doctor has not responded. Even his administrative assistant told me she’s unhappy about this, probably because she has to keep fielding my annoyed calls. How did we go from hands flailing, you-must-get-down-here now to silence? I don’t know, but I’ll be calling tomorrow. Again.
Meanwhile, last week my ear started getting clogged again after two weeks of blissful not being clogged. By Saturday morning, it stopped draining completely, and I haven’t been able to hear out of it since. (My husband just loves that I’m constantly asking him to repeat himself.) Surgeon #1’s office directed me to Surgeon #2, and I saw him today.
Apparently, the skin graft in my ear canal is swollen. So he put a wick (basically a spongey stent) inside the canal, and now I’m on antibiotic ear drops for the next two weeks. Also, my ear canal is cold because it’s propped way open. Also, also, I still can’t hear because of the stent.
I might be paranoid that a bug will fly in. Hopefully, this paranoia is unfounded and ridiculous.
In a book. Don’t get too excited.
Still, it was satisfying to name my character’s Big Bad after my personal Big Bad and have her kill the bitch.
It’s the little things, right?
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.
Says the insurance company employee who called to tell me my PET scan was denied.
Are you fucking kidding me?