Category Archives: Health Updates

The Situation, 7/26/15

The Summary.
Glasses are in. Betty’s being a pain. Maybe.

The Details.
Sorry it’s been a while since my last post. There’s been nothing much to write about. Last Tuesday I got my third dose of the Kill Betty Juice, so there’s only one more to go! (For Phase 1 of the study, that is. Whether I move to Phase 2 depends on how well Phase 1 works.)

Is it working? I really don’t know. Signs had been pointing to yes, but some pain has started returning this last week–around the ear, in the ear, up my skull, and down into my jaw. Those nerves are all connected, which makes pinpointing the source difficult. It’s hard to say whether it’s Betty’s signature pain, as well, because I think some of the pain that I had once assumed was Betty pain, was actually being caused by something else (that lump below my ear, which was probably either a cyst or an infection). My current pain is similar to that pain and to some Betty-style pain, mostly at the spot where my glasses rest on my ear. It’s very mild, for the moment at least.

My eyes are still wonky too. I can’t focus my left eye while wearing contacts anymore, and wearing contacts also exacerbates the redness. So for now, it’s glasses everyday for me. Neither the ophthalmologists I saw, nor my cancer doc, are too concerned as everything else about my eyes appears fine.

The holding pattern continues. Any other side effects have been mild. I’m going to mention the pain to my local doc this week, but I’m guessing nothing is going to come of it until I get new scans at the end of August.

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.

I Continue To Be Abnormal

But you already knew that.

I played Stump the Surgeon yesterday. Oncologist’s office made me an appointment with the surgeon because of my leaking, and he (surgeon) checked me out yesterday. He agreed with my oncologist that it’s Betty causing my paralysis, but he can’t find any sign of infection. Of course not.

So basically he has no obvious explanation for why my ear started leaking other than that it looks irritated from the cancer. (Not that this would necessarily cause leaking.) He also has no explanation for why my pain spiked then vanished, or why a lump on the side of my head has shrunk.

Wild card: the lump really was cancer and not an infection like I thought, and the treatment attacked it viciously. It’s not impossible–the treatment can work extremely quickly in some people–but it’s a very, very long shot.

He warned me that even if Betty is causing the paralysis, and if the treatment works, there’s no guarantee that my face will return to normal on its own. (Oncologist said he thought it would. But then, no one seems capable of agreeing on anything lately.) I also have some antibiotic drops just in case there is a minor infection somewhere.

And that’s it. Ugh.

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!

Hot Date Update

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.

A Friday Night Hot Date… With The ER

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.

I Am Pre-Qualified

mouse 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 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.

The Situation, 5/12/15

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?