First Round Of Treatment For Lea’s EGFR NSCLC: A TKI Called Afatinib

Afatinib. It isn’t as tasty as it sounds…at least I don’t think it is. I’ve never tried it, but I can tell you that it’s not the same as Twizzlers Cherry Nibs, far from it.

First, Twizzlers Cherry Nibs don’t need to be stored in a dark, safe place, far away from other living creatures. Second, you should probably wash your hands after stuffing those little yummy morsels of deliciousness into your pie hole but it’s unnecessary…unless you eat them like I do. And third, it would probably take a dump truck load of these little beauties to even come close to eliciting some of the wonderful side effects my sister had when taking this drug, if at all.

Diarrhea may be the exception because I have heard that licorice may cause that in some folks. I wouldn’t know firsthand, but I’d heard somewhere that this may be true. That would be a delicious theory to test…maybe?

I know, I’m a smartass. Again, who the hell comes up with these bloody names? A fati nib…seriously. Who knew a nib was fat, and what the hell nib are they talking about? Maybe I’ll call my next pet rock this name…and then again, maybe not.

Continuing her story

Anyway, I set out to tell my sister’s story and I am forging ahead with that. I’m still going to keep moving along on Caelan’s as well but as of late, Lea seems to be haunting many of us within the family and I felt compelled to pick up where I left off a while ago. I’m not trying to confuse anyone or be mean by mixing it up, I just write about what strikes me in the moment. So on with the show…

Once Lea managed to get a hold of the weaning process with her youngest, she knew she had to start treatment. At the time, there were other TKI (tyrosine kinase inhibitor) therapies that her oncologist had considered, but he felt that despite the side effects being harsher, this would hit her cancer harder. So, at that time, Afatinib it was.

As I recently shared, being young and having cancer forces some patients to consider many different things that you and I take for granted. These drugs are no joke. Just because you can treat cancer with something in pill form, doesn’t make it any less potent.

Don’t get me wrong, I wish Caelan would’ve been spared from the whole process that chemo requires, but this was no picnic either some days. I am hopeful, that one day this will be a reality for children living with cancer. It would certainly be a lot less invasive and could possibly spare them from some of the trauma and maybe even lessen the side effects they face when dealing with their treatment. I remain pessimistically hopeful.

Fancy and potent

So yeah, Afatinib, where do I begin? It’s also known as Gilotrif, so that’s a start I suppose. They always have 2 names (Gilotrif is apparently the brand name) and I find it confusing, but nonetheless, here we are.

Let’s just start with the moment she took her first dose, shall we? I’ll never forget that. She was terrified. There’s just no other way to describe it.

She read and re-read everything she could about this drug, which wasn’t much, but knew it had to be taken on an empty stomach and she felt that she should probably have her phone close by in case she died after ingesting it. I laugh about this now, but you just never know.

Afatinib is a targeted therapy, meaning that it targets and kills specific cells. What that also means is that healthy cells are also sacrificed in the process. The things Lea dealt with when taking this drug, affected her stomach, skin, mouth and nails most of all, which makes sense because the E in EGFR is epidermal…right?

So she takes this pill and we waited for her world to end. Yup, overly dramatic? Probably.

Frequenting the Oval Officefrequently

If I recall, she didn’t really suffer anything sinister right off the bat, thank goodness. One of the first things she did have to deal with was dun dun dunnnnndiarrhea. Not pleasant, but definitely doable when compared to vomiting (if you’ve read before, I can’t stand barfing…at all). I think she may have had some nausea and stomach issues, but the diarrhea was probably one of the most challenging things to deal with.

How bad was it? Well, if you consider having to take the whole extra large sized box of anti-diarrhea pills with you into the Oval Office while simultaneously wondering if just one box will do, then Bob’s your uncle. I can’t deny the fact that my family has always sort of had to deal with these potty issues, but this was a whole new ball game.

I remember her having to continually pop pills in the bathroom until it finally stopped at times. Not only that, Lea’s youngest one, suffered outside the bathroom door for many a lengthy duration while his mother worked the facilities. Not a fun scenario, for anyone.

The consideration of new purses

Lea would laugh if she read that. Although her story may be tragic, she was always a sucker for bathroom comedy. She wasn’t everyone’s cup of tea and I’m sorry for not giving a TMI alert earlier. These are some of the things I think she’d want others (who may be dealing with this) to know, so that’s why I write about it.

Anyway, this happening occurred often on the daily and made it a little difficult to go places. I can only imagine how people deal with the multitude of diseases and complications of the stomach or anything for that matter. I feel for them now that I’ve had an up close and personal experience with the things that could go completely haywire within the human body. The unpredictable nature of this side effect was very isolating at times.

I remember Lea and I comically discussing the purchase of some much larger purses at one point, in order for us to go out. One to hold the massive amount of poo pills she may require, and the other to be used in the event of an uncontrollable emergency…wink wink. The purse being utilized for emergency purposes, had to be cheap…if you know what I mean.

Drum roll please

Lea also dealt with some pretty harsh rashes all over her body and skin splitting around her nails. The rash was painful and the deep, cut like wounds (usually around her nails) on her hands and feet were distressing. Managing was difficult, but she did and over time it seemed to quell on occasion.

I think one of the most difficult things for me was what it did to her hair. I know, it’s only hair, but she was a stylist by trade and hair of course was her palette. As I mentioned before, she had shaved her head a few months previously for Caelan and what we didn’t know was that this drug slowed down her hair growth, and altered her hair immensely.

When it did finally grow out enough to see the effects, it was very coarse and also had an odd curl to it. I’m not certain how common this is, but it did eventually correct itself once she got off of it. Her hair grew very little during this time in her treatment.

Lea also had mouth sores and these little nasties were also distressing and made it very difficult to eat. Many a chemotherapy patient deal with this side effect and as tiny and harmless as it sounds, Lea not being able to eat comfortably wasn’t a good thing. Nutrition was vitally important, obviously.

Is it working now? How about now?

It didn’t take long for her treatment to start working its magic and wreak havoc on my sister’s body. The oncologist was hopeful and confident that this was going to reduce the size of her tumors. We all hoped for her to become that one in a million who had no evidence of disease (NED) immediately, but that was wishful thinking.

Because this was a few years ago now, I am a little foggy on exact details, but it actually didn’t take long for the Afatinib to start working on her cancer. If I remember correctly, my sister ended up heading to the emergency room for having chest pain not long after starting treatment (a week or so in I believe). Any chest pain when using this medication translates into an immediate visit to the hospital in the event of a severe adverse reaction.

This moment was a pivotal point for me in this journey. My sister went to the closest hospital emergency room department to us and it was a bit of an eye opener. It was winter, and I remember she and Wade heading out later in the frigid afternoon, leaving both boys with Clem and I.

What do you mean they don’t know about Afatinib?

Any time my sister went to an appointment where I was unable to be with her, we’d text. On this day, it was the same. Once she got to the hospital, she got a little freaked out by the fact that the doctors and nurses had no idea what Afatinib was. Not a clue.

That would scare the shit out of me too. You’re there because of possible drug complications, but they have no idea what medication you’re talking about. Could you imagine if she had been unconscious, or worse yet, had fallen unconscious while at the grocery store or the like without anyone there who knew her when it happened? This medication interacts with a lot of things and some of the interactions hadn’t been identified yet.

That’s a little insane when you think about it. I’m going to go out on a limb here and say that there are probably many medications that doctors have never heard of before and that could lead to some very dangerous things. Crazy!

Losing confidence

I understand that there are a lot of conditions with many different forms of treatment, but with the amount of lung cancer cases out there, surely one of the staff had come across another patient taking this drug at some point? Am I the crazy one for thinking this? Anyway, because the cancer hospital pharmacy was closed (it was the weekend), they had to do some research for themselves.

As Lea was texting me the play by play, all we could do was try and remain calm and hope that they would get it figured out. Talk about hope and a prayer. Who was I kidding, I wasn’t even calm, nor was I confident in her treatment at the emergency room at that point.

As time would go on and as experience would have it, the lack of confidence I felt, was verified. We’ve encountered far too many doctors that were unable to properly identify and treat my sister for things that were clearly evident just by listening alone, as you will discover in the story I tell. Sadly, I’ve heard of many more encountering the same issues over the last couple of years and that’s far too many people lacking competent medical care, in my opinion. That should be terrifying to all of us.

MIA

After a couple of hours, Wade felt hungry and my sister, as usual, told him to go and eat (cafeteria hours are weird in hospitals, they never seem to be open when you need them, like during meal times…what’s that about?). He was getting antsy and didn’t want to sit with her in the ER any more either. As luck would have it, my youngest nephew had popped his chicken so to speak and had been hanging out by an empty bathroom crying his eyes out because he thought his mother was in there when she wasn’t. Separation anxiety, yes sir.

We did everything we could to try and comfort him to no avail, and finally called Lea to let her know. Wade had been gone a while by that point, and Lea had to track him down. It was finally decided that he should make the 20 minute journey back to us and that I would spell him off and wait with Lea at the hospital.

I didn’t want her to be by herself but I didn’t want to leave Clem to deal with all of this until Wade arrived. Clem is very capable by the way, I just didn’t want him to have to handle things all by himself. He and I don’t have set roles within the house in regards to house work or child care, it’s a shared responsibility here.

Tag team…forget it, I’m out

Long after Wade’s part was arranged, Clem and I awaited his arrival. Think of it as tag team wrestling. I was pacing by the front door, ready to go as soon as he got there.

When it was evident that he wasn’t going to show after nearly an hour, I took off for the hospital, leaving Clem with the 4 kids, one of which was inconsolable still. To say it was a bit of a circus that had gotten out of control, would be very accurate. I felt bad but I had to go.

Just as I was about to pull into the hospital, 20 minutes later, Clem called to say that Wade had finally shown up. We had no idea where he went, but he was MIA for a while when we needed him most. Unfortunately, this was the usual from Wade throughout this story.

As I was about to go and park, I spotted my sister standing outside the doors of the ER. She walked toward the curb, motioning me to come to her and I veered in to pick her up. Apparently, she was good to go.

Thank goodness for that

Yeah, imagine that! They did their usual tests but couldn’t find anything wrong so they sent her home. In Lea’s words, the chest pain felt odd and she’d been having some twangs here and there in different parts of her body, but apparently she wasn’t having a heart attack or dying or anything. Thank goodness.

I remember her saying something about her lung possibly and hopefully re-inflating where the large tumor was located. We didn’t have any confirmation, but I think she said it was a possibility. I hoped that was the case, but we wouldn’t have any proof of how quickly or well the treatment was working until her next scan…in January.

While driving home, we talked about the exciting possibility that she could possibly be feeling her tumors shrinking and how amazing that would be. Christmas was coming up and we were all trying to find something positive to celebrate within Lea’s situation. Our celebration of the completion of Caelan’s hell ride was very short lived, but we had much to be thankful for. Sadly, Lea’s grim diagnosis and uncertainty, overshadowed any and all of the positive we’d recently acquired.

The new normal

I realized that this was going to be our new reality. The trips to the emergency room, the side effects she’d have to navigate and the uncertain future were all about to be an integral part of our lives. If I’m honest, I took having a normal life with predictable outcomes for granted, and there was no going back after this.

This was how we’d lived previously when Caelan was ill BUT, we knew we had an end date for treatment and that she would be okay, so there was a light at the end of the tunnel. If you were to ask me if this life ever felt normal to us or if we’d become accustomed to it by then, I would say no for both. If anything, we struggled to get to the end of Caelan’s journey and looked forward to getting out of that insanity as quickly as we could.

Being thrown back into this life without any idea how long we’d be immersed again, was heartbreaking. Attempting to come to terms with that realization was another thing entirely. Living with disease is one thing, dealing with the life you have to live surrounding it, is a very delicate endeavor.

In this case, we knew the ending wouldn’t be a happy one and trying to live with that fact daily, made us change in ways I’d never imagined.

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