Health & Wellness,  My Breast Cancer Journey

My Journey with Nerlynx (Neratinib)

Nerlynx (Neratinib)Disclosure: This post may contain affiliate links. See my Affiliate Disclosure to learn more.
My Breast Cancer journey has not been an easy one. Six rounds of chemotherapy, a double mastectomy, 5 weeks of radiation, finishing out one year with Herceptin, a Her2 targeted medication, and then reconstruction surgery. To say that my body was a little worse for wear would be an understatement.

When I finished my Herceptin treatments in September 2017, I was happy to have finally reached the end of all my treatments, so I could finally focus on getting back to normal life. Whatever my new normal would be.

My Breast Cancer Type:

As if being diagnosed with an Estrogen and Progesterone positive cancer, which required me to be put into early menopause, the HER2+ aspect of my cancer meant it was much more aggressive. In these cases, the HER2 gene is defective, for lack of a better term, and makes too many copies of itself. These extra HER2 genes cause the breast cells to grow and divide in an uncontrollable way. These cancers grow faster than those that are HER2 negative. That is why Both Herceptin and Prejeta were part of my chemotherapy regime.

Since HER2+ cancers have a higher risk of recurrence, and my genetic testing showed that I was also ATM(Ataxia-Telangiesctasia mutated), which also increased my risk for breast cancer. That was the main reason behind my double mastectomy because, after everything I had been through, I did not want to go through it again.

Towards the end of 2017, I was finally starting to feel like I was on the path to health. I had started using a product called Isagenix, and it was helping me heal from the inside out.

I still had monthly visits with my oncologist, for my Zoladex shot, as well as to check in and see how things were going post-treatment. In January 2018 I received the notification that I was, in fact, a survivor of Breast Cancer! Keep in mind this does not mean that I am, or will ever truly be cancer free. That is a misconception. I will always have cancer in my body, but at this point in time there are currently no active cancer cells, and it will be a constant fight to keep those cells dormant, so they do not set up shop again in another part of my body.

Enter Nerlynx (Neratinib):

In the Fall of 2017, a new HER2+ targeted medication called Nerlynx received its FDA approval. Needless to say, due to my “aggressive” cancer, my oncologist was quick to want to get me on the medication as soon as possible. I had my concerns, especially when she said that the most common side effect was Diarrhea. To some, it may be an inconvenience, but for me, it’s a whole other story.

You see, I have been dealing with digestive issues for years before my Cancer diagnosis. My symptoms have run the gamut from constipation, diarrhea, body aches, Nerlynx (Neratinib)migraine auras, fatigue, and brain fog. I actually went Gluten free for a while because I was convinced that my issues were caused by gluten. That change improved my symptoms, but they never really went away. Then premeds and chemotherapy made things worse. It was a very long struggle, and after a year of treatments and feeling like just general poo. The last thing I wanted was to take multiple steps backward after I had worked so hard to claw my way to the point I was currently at.

Neither my husband nor I was all that convinced that this Nerlinx medication would be beneficial in my specific case, but every time we tried to push back, all we heard was that my cancer was aggressive, which left us feeling like we didn’t have much of a choice in the decision.

We reluctantly agreed to try Nerlynx, with the assumption that Diarrhea would be the only thing I would have to deal with. She put the request in the works, and casually mentioned that a 30-day supply could cost somewhere around $10k a month. We immediately balked at that, as there was no way we could afford $10k a month, for an ENTIRE YEAR! In the end, they had worked out a deal with Biologics where I only had to cover a $10 copay each month.

It seemed like overnight, before I could even digest what had happened, I was approved and my first 30-day supply was on its way to my home. We had already had an overview of the medication with one of the nurses at my oncologist’s office and were given the general overview of possible side effects, proper pill handling, etc.

I was still skeptical but kept feeling like I needed to be the “good little patient” and take these pills whether I wanted to or not.

My first dose of 240MG (6 pills) was in the evening of February 22, 2018. And my first bout with diarrhea started approximately 12 hours after my first dose. Now, this is where my existing digestive issues come into play. No matter what I eat, I easily swing from one extreme, diarrhea, to the other, constipation. In an effort to avoid spending all my waking hours in the bathroom, I tried to take Imodium to lessen the effects, but even on the smallest dose, it pushed me to the other extreme. Painful cramping, and spasming that at times felt like sciatica.

The Misery Begins:

After about two weeks on the medication, I began to develop unexpected side effects. My chemo rash started to return, joint pain, body aches, brain fog, and fatigue just to name a few. It reached a point where I didn’t even want to get out of bed, and I completely lacked motivation and focus to do even the simplest of tasks around the house. I was experiencing side effect that was far worse than I had ever experienced when I was going through my six rounds of TCHP (docetaxel, carboplatin, Herceptin & Prejeta) chemotherapy.

Nerlynx diarrhea But this is where it gets really strange. There is an undocumented cross-contamination issue with Nerlynx. As if my side effects were not bad enough, about 3-4 days after I had started this medication, my husband developed uncontrollable diarrhea as well. Keep in mind, we practice proper medication handling. I was the only one to touch the pills, as I was the one taking the pills, and the only potential interaction he had with it was via what I was most likely sweating out of my body during one of my many hot flashes. Even our eldest cat, the one who always snuggles with me when I’m not feeling well, came down with diarrhea as well. We brought this up to my oncologist, and no one had an answer for us. I knew what we were experiencing, and it does sound crazy, but instead of rationalizing that cross-contamination was a real possibility, I was looked at like I was crazy and our symptoms had to be from anything else, like an intestinal parasite, then the Nerlynx pill. We were frustrated because we knew that Nerlynx was to blame since the side effects coincided with my starting the medication, but since this medication was so very new, there was no documentation of this happening to anyone else.

During this time, my husband had been doing research on this medication, and he was not happy with the information he was finding. Studies were showing that a year on Nerlynx only gave a possible 2-3% reduction in recurrence of cancer over a two-year period. He didn’t share any of this information with me in the beginning, because to be honest, I was in the mindset of not wanting to know. But after a month on the medication, and constantly feeling like poo, I started doing my own research.

I found the studies showing the minimal risk reduction, articles that said the UK was kicking back on approving it and not to mention the fact that this medication had changed hands multiple times. It originally belonged to Pfizer, who sold it off to Wyeth, then to Puma.

There was an article in Forbes of the Negligible Benefit Of Nerlynx, two different articles, Neratinib Is Approved: Should We Reject It Anyway? and ExteNET Trial of Neratinib: One Size Does Not Fit All in HER2-Positive Breast Cancer in the ASCO (American Society of Clinical Oncology) Post.

There were concerns over toxicity levels, and the more I read, the more and more I found myself frustrated and concerned about the potential long-term side effects, since there was yet to be any documented evidence of side effects after a year of this medication, since it was so new to the market.

A month had passed, and it was time to refill my script. I was becoming highly concerned with what this medication was doing to my body, as with each passing day I felt worse than the day before, and my poor husband wasn’t doing much better. We tried eating the blandest foods possible, but it just didn’t matter. The Isagenix Protein Shakes we drank every morning seemed to be the only thing that kept us going.

Is the Misery Worth The Minimal Gains?

Then came time for our next Oncology appointment. We felt like we were stuck between a rock and a hard place, with no choice but to continue taking this medication regardless of how miserable it was making me feel. While we were waiting to get called into an exam room, we ran into my Breast Cancer Navigator. She asked how we were doing since she hadn’t seen me in a while, and needless to say, we unloaded on her in regards to what was going on with Nerlynx. She felt bad and advised us that it was still my body and I should still be able to have the final say in what medications I do or do not take, although we felt more like we had been bullied into taking this medication, due to my aggressive cancer. And we felt like we had no choice, either continue or be the uncooperative patient.

Apparently, our discussion had been overheard by my oncologist because when she entered the room, her first comment was to the effect of “so are we discontinuing Nerlynx?” We had a very long discussion, about everything I was experiencing, and that it was quickly becoming a quality of life issue. I had no energy or motivation to leave the house, my husband had to drive me everywhere, even for weekly errands like grocery shopping. She advised us that studies had shown that symptoms improved after about 6 weeks on the medication, so we came to an agreement to “give it the good old college try” for two more weeks and see what happened. If symptoms improved, we would agree to remain on the medication, but if they got worse, we had her approval to discontinue the medication and see if things improved.

Enough is Enough!

Needless to say, we didn’t make it the full two weeks. On April 14, 2018, my husband developed an unexplained rash on his leg, and the only thing he had come in contact with was my excessive sweating during the night. This rash was painful and didn’t spread. He was also suffering from the very same chemo rash that I was. The painful white bumps that look like pimples but are not. He had also developed the joint pain, muscle aches, and brain fog. Again, he had no contact at all with the pills beyond what I was sweating out each day. I took 240MG each and every night, so there was a constant level of medication in my system. And articles like this one on Safe Handling of Oral Antineoplastic Medications: Focus on Targeted Therapeutics in the Home Setting, and the Cargiver Exposure to Chemotherapy goes to show that cross-contamination is a very real possibility.

The first method to removing toxins from the body is to sweat them out. So logic would tell me that if I am constantly dosing myself every single night, the medication is constantly in my system, active medication will be expelled from my body in a variety of ways.

Life After Nerlynx:

I stopped taking Nerlynx on April 16th, 2018, and have never looked back. The diarrhea went away almost immediately, but detoxing from this medication has not been an easy task. Not long after discontinuing the pills, I experienced joint swelling, stiffness, and pain unlike any I had experienced before. The pains were so bad, that I thought I was dealing with the start of Rheumatoid Arthritis since it runs in my mom’s side of the family.

It started with my ring finger on my left hand. The joint was so swollen I could no longer take my engagement ring off with ease. Then I experienced swelling and stiffness in my right hand, which my husband was concerned could be the start of lymphedema, so he advised I wear my garments. The swelling was only in my thumb and hand, and the garments didn’t make any difference, so I discontinued use.

Every single joint in my body hurt. Soaking in a warm bath helped for a little while, but then the pains would come back again. I soon found myself in a different type of misery. We mentioned the concerns about Rheumatoid arthritis to my oncologist, and on my next visit, they tested for RA, which came back negative. About a month ago, I saw an article in a magazine that mentioned using Bone Broth Protein. I knew my digestive system was in really bad shape from the Nerlynx medication, and I knew the benefits of Bone Broth as I used it during chemotherapy, that I figured it couldn’t hurt to try. I talked it over with my Naturopath, and she recommends specifically the Bone Broth Protein from Vital Proteins. It comes in both Beef and Chicken flavors, and I use the Beef all the time in my morning coffee.

I have been using it daily, for about a month now, and I am slowly starting to see improvement. My joint pain and swelling have improved dramatically, but I am by no means out of the woods yet. I am back to planning healthy meals each week to try to provide our bodies with the nutrients they need to undo all the damage that not even two months of this medication caused.


So, I guess the question is, would I recommend Nerlynx? To be honest, I’m really not sure how to answer that. I personally wish I had never taken this medication, as it undid six months of healing in not even two months time. I have good days, and I have bad days, and the bad ones are worse than when I was on chemotherapy. But it seems that Nerlyx effects every single person differently. Some can tolerate it very well, while others experience severe side effects.

My advice to those who are considering taking this medication is to do your research. The links to the articles in this post are just the tip of the iceberg. As time progresses I am sure there will be other Breast Cancer sisters who will post about their own personal experiences with this medication, some good others possibly bad as well. Do your research, ask questions, and make sure you are 100% comfortable with your choice, as only you can decide what is best for YOUR body. Don’t let anyone make you feel like you’re being bullied into making a decision. Was my oncologist happy with my choice to discontinue this medication, no, probably not, but it is still my body, and I have to live with my choices. And I much preferred a better quality of life, than feeling like a prisoner in my own home from a medication that only promised a 2-3% decrease in recurrence. Life is just too short to feel miserable.

Till next time.

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