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.

98 comments

  1. i’m so fucking pissed for you.
    i hope you get the best treatment you
    can get and INS is not an ass. i’m
    so sorry.

  2. I am so angry you have to go through this. Sending healing vibes to you. Hoping your treatment is tolerable and that Betty takes a hike for good! xoxoxo <3

  3. Well, fuckity fuck. This is a crap development. I hope these are good options and that you’re in the B group (those without severe side effects.)

    As for your insurance company … is it time for us to launch a social media campaign to publicly name and shame them? If not now, let us know when.

  4. God damn it. Betty just won’t fucking die. And she needs to. She really does. And it pains my Canadian heart to hear that your insurance company may not pay for both treatments at the same time. WTF happened to wanting to heal people and putting that above red tape?? Huge hugs. You are a fighter. Here’s hoping this round will be the thing that knocks Betty on her ass.

  6. <33 Thanks, guys!

    No need to attack insurance yet. We'll see if it comes to that. It doesn't sound like it would be unusual for them to refuse in this case, unfortunately, because it's not common treatment.

    Norma, healing people before red tape or profits? What?! You're so Canadian. 😉

    1. ‘Norma, healing people before red tape or profits? What?! You’re so Canadian. ‘ apparently so! I think you need to move to Canada or better yet France or the Netherlands for proper health care. Jeeze..

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