Nerlynx: The good, the bad, the shitty

40 days.

240 pills.

1950 pills to go.

Not that anyone is counting.

…

Nerlynx aka Neratinib. When I last shared info about this little drug, I was just beginning. Now, I am 40 days in. Enough days, I think, to have collected some anecdotal evidence for anyone considering the drug.

A little quick recap of the drug so you don’t have to pop over to my first post:

A new drug. On the market as of July 2017. It’s another way to halt the progression of cancer growth. It’s another way to combat recurrence. It’s another way to add time.

This drug is specifically for people who were able to have Herceptin. It’s specifically for those who have been diagnosed with early stage HER2+ breast cancer.

According the the Nerlynx website:

So. That was the before. That was the start. And now, we are shit-deep errrrrrrrrm knee-deep in Nerlynx. If you have no need to read about my bathroom habits, please, walk away from this post. Now. You’ve been warned…;)

Here is what I know so far (The bad & the shitty):

1. The possible side effect of stomach discomfort is legit.
   1. The very first day I took my six tiny pills, I was driving to Lincoln to see my dad in the hospital. During said trip, I had to empty the Chick Fil A bag that carried my mom’s lunch, as well as the cup that carried my sweet tea so that I could barf into both of them as I drove.
   2. The stomach discomfort comes in waves and pains. And it definitely was the very worst for the first three weeks.
2. Possibility of skin disruptions is for real.
   1. I have the chin of a teenager, currently. One day, my skin is squeaky clean, the next, a zit from 1996 shows up to greet me in the morning. I’ve been extra careful about what I put on my skin and daily cleansing and care. The only cleanser that seems to not completely blow it up is CeraVe hydrating cleanser. (And yes I’ve tried multiple products so no, I am not interested in buying any others… if you have some holy grail product you want to send me, go ahead, I’ll try it;)
   2. Additionally, my fingers are cracking. Similar to going through chemo, the skin around my fingernails is cracking. It doesn’t terribly hurt, it’s just another sign that there is something foreign circulating through your body.
3. Fatigue is tiring.
   1. It’s weird but yes, the fatigue hits you almost four days in, it seems and then, hangs around for a couple of weeks. I have had to be reminded that this is in fact, a chemo drug and as such, those on it must take it easy and allow themselves grace as their body adjusts. I also find that if I get behind on sleep, it’s a scene.
4. Irritability is an asshole.
   1. Yes. It seems that this drug is making those of us who are taking it, irritable and cranky. I am hopeful that this will dissipate even more over the year. I am not a crabby person and I don’t enjoy this side effect. Neither do my children, I’m sure.
5. Food aversions are along for the ride.
   1. If I just ate baked potatoes every day for every meal, I think my stomach would be much happier. Prior to going on this pill, I was on a grain-free diet for 3+ months and was eating veggies for every meal to help combat inflammation and because I love vegetables. mmmmmmm. Now, veggies are the worst offenders and cause major fits of the shits. Also, carbs are the only thing that seem to sit okay so, they’re back on the menu.
   2. Things that I couldn’t handle the taste of during chemo, like coffee and wine, seem to also have a metallic taste on Nerlynx. It’s doable. But noticeable.
6. The diarrhea is the shits.
   1. Ohhhhhhh boy. The diarrhea. I felt like I was doing so well. And then, notsomuch. The diarrhea and the unknown of it all has kept me from group fitness for the last 40 days. Because you just nevvvvvver know when the storm’s gonna hit…
      

      photo credit http://www.vitamin-ha.com/funny-quotes-16-pics/funny-quotes-06/#prettyPhoto/0/

       

   2. Yesterday, I actually got a round of IV Fluids as the stomach disruptions have become so frequent. With the med, you are given Loperamide (Imodium) to take alongside it and can take up to 8 of those a day. I try to not take the Imodium until I know it’s a rough day because otherwise, for me, it seems to cause nausea. Then, I am taking Zofran to comabt that and then… just more pills to counteract other pills and that gets confusing. I could see possibly looking at doing fluids once a week because the amount of water I drink never seems to be enough to replace what’s going out.
7. UTI all up in my eye (errrrr… notsomuch eyes….)
   1. I once had a UTI in college while working 12s at the hospital and it was a situation. Otherwise none. Until now. I think I’m two in. This is a noted side effect that is on the short list and I didn’t realize that I had it until I reviewed the short list and determined that I needed to call in for a UA. And fo sho. But, those are fixable. And I think the IV fluids would also help combat these in the future.

Here’s the rest of what I know (the goods):

1. My life is not disrupted from this drug in the way it was on a full chemo regimen. I have not had days where I just don’t have the energy how to get out of bed. That’s a huge win. I mean, again, this is in the category of chemotherapy and it’s toxic (and no, there is never a time where I type that without singing Britney) so really, the side effects you endure are really way more manageable than my intensive chemotherapy.
2. This drug is continuing to get rave reviews and outcomes. Even after further trials and studies, the efficacy has only been further-proven to be a winner winner chicken dinner.
3. It is just one year. And I am 40 days in. Yes, I am counting down because the less pills in my body, the better. But I only have 325 days left;).
4. The cost with my insurance is just $10. That is very affordable for this type of safeguard.
5. I still feel fortunate to live in a time where new advancements are being made. And to have an Oncologist (Dr Tandra with Nebraska Medicine) who a) are so current on these advancements AND b)who say things like, “I hate that I have to put a 35-year-old woman on a drug with so many side effects but the research is so good!”
   1. Case in point — he gets it. He listens. And he is watching me VERY closely.

So what’s my current feels?

I’m stickin’ with it. The side effects do seem to get more manageble the longer you’re on it and I am told that the two-month-mark is some sort of magic settling in and have my eyes on that prize. I shared all the nitty gritty here as I never ever ever want to sugarcoat any piece of a process or a moment in life. Sometimes, to get the good, you have to wade through the shit. And this is no exception.

I also know that some people have tried it for a bit and jumped ship and I can 100% understand why. It’s no walk in the park and for different people, the advantages look different. For me, my advantages look very positive and therefore, outweigh the negatives. I have also been extremely fortunate to have a good friend that is a few months ahead of me and in times where I’ve thought about ditching it, she’s been my confidante and stay-the-courser.

I have a couple of goals moving forward with Nerlynx as I navigate the 325 days left of my treatment.

1. I hope that I can work with a dietician about what foods I can eat without having an ass-plosion ten minutes later. Or the next day. I have already consulted my onc about getting a referral for such things.
2. Continue to work fitness back in as I was able to get a workout in about 4-5 days a week prior to this drug and work back toward that.
3. Recognize that therapies like Nerlynx are beneficial and may work in my life or may not. Each patient is going to tolerate differently and have different experiences. And it’s up to each patient to decide if it’s good for their life.
4. I will probably ask about fluids right away if the issues persist. Although there is no scientific evidence, there is scads of anecdotal evidence to support the way that delivering fluids and hydration to the cellular level can have a positive effect on a human. I was one who benefitted GREATLY during chemo from this type of tune-up, it’s no wonder to me that it helped restore some balance to me this time around.
5. Lastly, as I take Nerlynx, I am reminded of the chronicity of having had cancer. Just because I am two years (almost!!) out from my cancer-free-versary, doesn’t mean that there won’t still be setbacks and reminders. I had really gotten into such a wonderful spot and this on-ramp to Nerlynx has been more than I bargained for — but truly, likely in large due to the fact that I had a break after doing chemo+herceptin and then starting this. I don’t know if the side effects would have felt so strong if I was just out of a traditional chemo regimen. But for those who are no longer taking this or not even considering it, again, I hope that I can help those understand that each of our own bodies have different needs and each of us will benefit (or not benefit) individually.

Would I start the drug again if I had the choice?

I would. Here are my reasons: Barrett. Jonah. Harrison. Adam.

I said from day one, I would do whatever I felt would most benefit them in this journey. And while they all have to deal with mama’s new drug, I am optimistic that it’s another safeguard against recurrence and having to do the whole rigamaroll again. From an outsider’s perspective, I would guess most wouldn’t have any clue I’m on something new… that’s a drug I can handle for a year. If I had a career outside the home and was missing work because of the complications, it would be an entirely different consideration.

Also, I had Stage 2a very undetectable originally — a couple biopsies to pin it down and diagnose it, and then, no signs of lymph node involvement only to discover it actually was in the lymph nodes. My cancer was not a textbook case. My medical team (shoutout to NE MED!!) has always been very diligent, proactive, and aggressive in all pursuits AGAINST my cancer and FOR me. I’ve done little to no research on my own. But I trust deeply that Dr T and co are doing all they can to set me up for success.

My diagnosis could have been missed for years. But it wasn’t. Had I been diagnosed at a different time, there may not have been drugs yet to treat HER2, but jeewilligers did I get lucky with that. All of my timing has lined up.

So. I’m moving forward. For now. And counting down the pills… but not the days… those are far too precious, after all.