Neratinib Oral Chemo – The Adventure in Always Knowing Where the Nearest Bathroom Is!

**Please be kind this is not a fun topic to share with the world!**

Right now in the Cooper house we are in the midst of potty training our toddler so the following phrases are common place in our house…

“Don’t hold it for so long that you pee your pants!”

“Did you just poop your pants?”

“Get to the bathroom quick!”

“Is that poop?”

“Oh my goodness that is stinky!”

“Your turn!!!”

“Seriously!! Why didn’t you tell us you had to go poop/pee??”

“I don’t have a change of clothes or underwear!!!”

“Shit!!!”

“What’s that sound? Is that a poop or a fart?”

Yes, these are common phrases for us, however, it’s not just geared towards our toddler these days.

Now, these are phrases that I hear directed towards me…

Neratinib, or Nerlynx, is a brand new oral chemotherapy recently approved by the FDA for use as an extended adjuvant therapy for HER2+ breast cancer survivors who have completed their Herceptin infusions. It is taken orally once a day for a year. You start by taking 6, 40mg, tablets daily and adjust down if needed depending on the severity of your side effects. The most common side effects (occurring in greater than 30% of patients) are:

I’ve marked the side effects I’ve been dealing with regularly with a #dailyissue and those that come and go as #yepihadthat

Diarrhea (this I’ve heard is actually pretty much a side effect for everyone that takes the drug, it’s just the severity that differs from patient to patient) #dailyissue

Nausea and Vomiting #yepihadthat

Stomach pain #yepihadthat

Additional side effects (those occurring in 10-29% of patients) are:

Fatigue #dailyissue

Poor appetite #yepihadthat

Skin rash #yepihadthat

Muscle spasms #dailyissue

Mouth pain/sores #yepihadthat

So yes the side effects are a pain in the butt, literally and figuratively, however, I promised myself from the moment I was diagnosed that I would do ANYTHING to never have to go through this again and that cancer wouldn’t win!! So to me the side effects are just part of the journey. I’ve always had issues with my stomach and my bladder control has been a mess since I gave birth to my son so my capacity for dealing with this may be a little larger than most.

Yes, I’ve full on peed my pants, actually right after getting onto my son for peeing his pants!

Yes, I’ve pooped my pants, this is both embarrassing and not fun to share but if you are reading this and going through this struggle yourself just know you aren’t alone!

Yes, I’ve done both of these things at home AND at work…let’s make something clear there are no excuses for the incidents at home. We have 3 bathrooms all within a quick walk of anywhere you might be in the house. But at work I sit all the way at the end of the building and it takes me 105 steps (seriously I counted them on my FitBit) to get to the nearest stall in the only bathrooms on my floor (when they built our Corporate headquarters they only put one group of restrooms in the center portion of each floor). It’s even worse if the bathroom on my floor is closed for cleaning because now I am faced with the choice of “Do I wait for the elevator to take me a floor up or down or do I take the stairs down?”

Usually I take the stairs.

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Needless to say I have some things I NEVER leave home without, sort of like I should never leave the house without my son’s backpack with a change of underwear, pull up and change of clothes. First is my “oops” care package that my best friend Krystal gave me when I was having urinary incontinence issues after the birth of my son. This “oops” care package has 3 pairs of underwear, wipes and baby powder. The second thing is new to my “NEVER leave home without this” and is my “poop” care package from my wonderful mom. It has butt wipes and poop spray in discrete small packages that I can take with me when I’m rushing to the restroom. The third thing I carry with me everywhere is anti-diarrheal like Imodium, this is a must for anyone taking this drug and has greatly decreased how many times a day I’m rushing to the toilet. EMBARRASSING!!!!

But, like I’ve said, these are small prices to pay to decreasing my risk of a reoccurrence and let’s be honest it does make for some HILARIOUS stories for my inner circle (and now all of you)! The diarrhea is by far the worst part, there is nothing worse than having explosive diarrhea in a public bathroom, but just like everything in life there is bad stuff that you just have to decide to either power through or let go of. I’ve chosen to power through. And I know I’ve done everything in my power to not have to hear “I’m sorry but your cancer is back…”

If you or a loved one has taken this drug or been asked to take this drug I’d be very interested in hearing your take and experiences!!

One Comment Add yours

  1. Bestie says:

    I really enjoyed this blog post. Not the subject matter or the fact that you are going thru it of course…but it was extremely well written. I love you and you are becoming such a good blogger. I’m impressed ❤️.

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