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 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.
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.
Those plans I mentioned in my last post? They’re changing, but I’ll have more on that when I can confirm things.
Meanwhile, I was supposed to have scans on Monday, but my insurance couldn’t promise they’d make a decision about whether to approve them until end-of-day Tuesday. So now the scans have been moved to Wednesday. Gah!
And what makes this doubly infuriating and ridiculous? Look what I got today!
Those are the first month’s supply of the BRAF-targeting drugs that my doctor ordered. They were approved and overnighted with Saturday delivery by my insurance company.
Know what I can’t do? Take them until well after my scans are completed and decisions about my next steps are finalized.
So yeah, makes perfect (lack of) sense. What a waste of money because health insurance in this country is fucking ridiculous.
Disclaimer: This is not an April fool’s joke although that would have been nice.
The Summary.
Betty is on steroids. I’m healing. We’re going nuclear.
The Details.
I had seven fucking centimeters of tumor removed from my ear. I’m still not over this, but damn, no wonder I was in so much pain. Obviously, the fact that Betty is getting fat and happy changes things. My oncologist is breaking out the nuclear option, and I don’t just mean radiation. Chant with me: kill kill kill!
First, some more surgery stuff. The surgeons got seven centimeters everything they intended to get. Unfortunately, they couldn’t get nice, wide margins because Betty had grown down to my bone. Apparently, my bone looked healthy (and this time the surgeons had no issues identifying what was cancer, versus last May when they had to guess), but we all know Betty is a bitch and has likely sent out cells that are as yet undetectable.
Based on that, I’m most likely looking at a three step plan.
Step 1: We need to make sure Betty is still acting weirdly. That is, make sure she hasn’t taken up residence elsewhere in my body. I need another CT/PET scan. This is happening on 4/6.
Step 2: Assuming Betty is still just hanging out in my ear, I’m going to start radiation after my ear heals. I won’t have more information on this until I can meet with the radiation oncologist (this is happening on 4/3), but it will likely involve 5 days a week for up to 6 weeks of treatment. I’m told it would be very localized and shouldn’t be too bad.
Step 3: After radiation, I’ll probably be starting new medications. These are the drugs that target melanomas with the BRAF mutation that I mentioned before, and they are generally very effective for a brief time. They aren’t usually given to people in my situation (usually they’re given for larger, more widespread tumors), but my oncologist’s hope is that if I start them when there is very little of Betty left, they might be able to wipe out the rest of her.
The good news is that I continue to heal well from surgery. In fact, if necessary, there’s still more of my ear left that could be removed. Yay?
The Summary:
Still waiting on final biopsy results. More surgery is likely. Betty is a mutant has a mutation.
The Details:
The hold up with my next round of treatment apparently is because the lab has yet to finalize my pathology results, and so my doc can’t make final decisions yet. Two samples were sent to the lab – from the same spot as my last recurrence (last May) and from deeper within my ear canal. We don’t know yet which (or if both) came back as abnormal. Oncologist sent the lab an “I’m very disappointed this is taking so long” email yesterday.
Most likely what they’ll do is more extensive surgery. I’ll probably lose my ear for real this time, followed by radiation. I’ll have a new surgeon too, a head/neck specialist who I’ll meet next week. Whereas in the past, the idea seemed to be to save as much of my ear as possible, now it seems to be to take an ice cream scoop to the area and remove as much as possible in order to save me. I’ll sacrifice an ear if necessary for the chance of a longer life.
Then there’s sort of/but not really good news in that Betty has a particular mutation (BRAF) that occurs in about 50% of melanomas. Last year we didn’t think I had it. Initial tests were negative, but the final/definitive genetic test came back positive. The mutation makes the melanoma extra aggressive and more likely to be deadly (boo!), but it also opens up more drug possibilities (yay!). The drugs are very good at shrinking the tumors, but their effects don’t last long for most people (7-8 months). So the goal for me would be to get rid of as much of Betty as possible before trying them. The less cancer cells I have left in me, the better the odds that the drugs can eradicate Betty.