Tag Archives: TMMI

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!

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.

I Have A Wick In My Ear

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 Situation, 4/14/15

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.

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The Situation, 4/1/15

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?

Still Not Dead

Supposedly, surgery went as planned. I got to take my ear patch off today. Woohoo. What’s left of my ear looks like an earthworm wrapped around a piece of yellow gauze. A very bloody earthworm. I’ll spare you the photos. The gauze is sewn into my ear canal so I can’t hear on my left side.

Monday’s arrival was at 1, and we ended up leaving the hospital around 8:30 (the surgery itself started around 2:30 and took a little over 3 hours). I was actually feeling well enough to go home. This was either due to a miracle or that fact that the doctors gave me every anti-nausea drug they had, including a motion sickness patch.

Besides removing much of my ear, the doctors took two skin grafts from me–one around my collar bone and one on my upper right arm. Those patches are more sore than my ear, which so far hasn’t been too painful. My throat is also sore because fluid keeps leaking down it.

On the even more fun side, I can’t get my head wet, and my hair is crusted with blood. I’ll probably scare small children and squeamish adults when I have to go for my surgical follow-up next week. Also, I can’t stop smelling blood. I really wish I could shower. Please think cleansing thoughts for me.

In all, it hasn’t been as bad I expected. I’m definitely in less pain now than I was before. Here’s hoping the third surgery will be the charm. And that I won’t need to go back for any pieces the surgeons missed.

The Situation, 3/13/15

The Summary.
Surgery is scheduled. I can hear. Things can always get worse, and that’s actually good.

The Details.
My surgery has been scheduled for Monday, March 23, in the afternoon. This is me giving the world’s quietest cheer. I’m in pretty much constant pain at this point, so even the surgeon (#1 for those keeping track) suggested I might feel less pain post-surgery. I might need an overnight for this one, but they will make that determination the day of. I have never needed an overnight hospital stay in my life, so this is weird.

My CT scan showed what the surgeon expected to find, which is not great (great would be “Hey, looks like Betty has gone into spontaneous remission!”), but it’s not as bad as it could be. With cancer, so long as things could be worse, there’s reason to remain hopeful, I suppose. Anyway, Betty has not reached my bone so I won’t be losing any bits of my skull, and she’s not too deep into my ear canal. Basically, she hasn’t gone anywhere yet that makes surgery impossible. Surgeon #1 and my oncologist are still hopeful that they can eventually cut out all of her. Given those circumstances, they might not opt for radiation yet.

In more minor news, I had my hearing tested on Wednesday after my CT scan, and I was told I have perfectly normal hearing. It’s nice to know something about my health can be described as normal.

Thank you to everyone who has sent me cards and photos recently! I love the baby photos! 🙂

The Situation, 3/3/15

The Summary.
Met with an ear surgeon today. Met with another ear surgeon today. Betty travels more than I do. Insurance sucks.

The Details.
Both my biopsy sites came back positive for Betty. On one hand, not surprising. That’s just my luck lately. On the other, I was surprised to hear they found more cancer in the area they cut last year. Regardless, this does not please me. Betty needs to learn her place, which is out of my body.

As for surgery, it still isn’t a guarantee at this point, but everyone seems to agree surgery followed by radiation is the best option. So I think it’s safe to assume it’s coming. Ear Surgeon #1 says it would be a tag team effort between him (outer ear guy) and Ear Surgeon #2 (ear canal guy). And yes, he did comment about how crazily specialized everyone is.

What this means is that I will have a hole in my head. (Because I need that like I need a hole in the… Never mind. It’s too easy to make jokes.) All the cartilage in the bowl of my ear, plus the skin, and maybe some bone in my head will be gone. The docs probably won’t know how much to remove until they go in.

I should still have a ridge to hang my glasses on, and it should not affect my hearing or balance except temporarily while I heal. Skin grafting might be involved, and as always, the docs want to assure me that they can build me a new ear. I guess people worry about these things? I can see being concerned if it was my nose they had to remove, but I just want Betty out. Priorities, people! I’d rather be alive and freaky looking than pretty but dead.

Surgeon #1 suggested it was okay to say “no more.” To be sick of being cut open and to leave things be or try other treatments. Ha. If this is the best option, then it has to be done. If my ear must be a casualty of war, then I accept it as collateral damage. (Ask me whether I regret typing that while I’m recovering.) 

Surgeon #1 wants me to have another CT scan so he can see what’s left in the area post-biopsy, but as usual, my insurance is balking. I tentatively have the scan scheduled for next week. I’m fairly sure my insurance’s master plan is to fight everything in the hopes I’ll die sooner and they’ll have less to pay out. Fuck insurance right along with Betty.

Surgeon #2 wants me to have my hearing tested in both ears to generate a baseline. Surgical complications could result in hearing issues in my ear that would need treatment over time. Also, if Betty goes deeper into my ear, then eventually it could affect my hearing. So establishing the baseline is important for monitoring changes.

I read an entire book yesterday while on the bus and waiting for appointments, and I drank three cups of coffee because I had to be up at 4 a.m. and didn’t get home until 6 p.m. I’m still exhausted. If this post is incoherent, that’s why.


The Situation, 2/23/15

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.