The catch was the side effects.
- nausea
- extreme fatigue
- dehydration
- muscle cramps
- mouth sores
- sever diarrhea
Honestly, I thought, "Really? That's it? That's what I have been dealing with. This can't be worse then chemo, right?" So, after many weeks of talking about the pros and cons with Josh we decided that I would take it. I was really nervous because I had joined a support group, specifically for this drug, and the women in it had HORRIBLE stories of dealing with the side effects, specifically the diarrhea. I was scared to start it, but even more scared that if I didn't take it the cancer would come back.
So, on January 1, 2019 I started Nerlynx. There is a protocol for taking this medicine. In an effort to prevent the severe diarrhea the medince has to be taken with 6 doses of Immodium, even if there is no diarrhea. I did this. And guess what? I was in the 6% of the people who take the medicine and don't develop diarrhea right away. Who knew?! But due to all the Immodium I was now really sick. I was back in the chemo suite getting fluids and meds. I had to stop the Nerlynx. I was told to take a week off and let my body adjust. I got fluids every day and finally felt better.
A week later I started the medicine again, without the Immodium, This time I was throwing up and couldn't get out of bed. Back to the chemo suite for fluids and meds. I am not going to lie, I was pretty discouraged. I can remember my doctor coming to see me and standing at the end of my chemo chair telling me, "I don't think you can take this medicine."
Well, anyone who knows me knows I do not like being told I CAN'T do something. It was right then and there that I knew I was going to take this medicine. I was going to figure out a way to take it. I was going to will my body to adjust to this medicine because I was going to do everything I could to prevent the cancer from coming back.
I told him I was going to take it and that I would adjust to it. So he agreed to start me out on a lower dose and then build up to suggested dose, and that is what I did. And after 6 weeks I was on the full dose and I was actually feeling okay. I was really, really tired, but other than that I was feeling pretty good. The diarrhea that everyone talked about was not bad for me. Which was a HUGE relief.
Well, fast forward to August. My side effects started getting worse. More mouth sores, horrible muscle cramps, dehydration, and the diarrhea. All of a sudden my body had had enough of this toxic medicine. But I was not going to stop. I wasn't. So I dealt with the side effects and so did my family. So many times these words came out of my mouth,
"I can't. I am too tired."
"I can't. I don't feel good."
"I can't. I need to be near the bathroom."
I was really starting to get frustrated with all of this. I have said this before, but I wanted my life back. My life BEFORE cancer. I was tired of all this. I mean my medicine was coming in bag that said "toxic substance - do not handle" and I was putting this in my body! WTF?
But I kept on. I just kept taking it. I did have to take breaks throughout because the mouth sores and because of the diarrhea. But I kept going. And on February 5, 2020 I took my LAST dose of Nerlynx! I was so freaking happy. But I was/am also scared. It's similar to when my chemo ended. It's like a little crutch. A way to know that something is being done to keep the cancer away. But it was also a little box to check off an start moving on.
And that is what I am doing, I am moving on! I am moving forward. It's hard. It's scary. But I am doing it. And this is off my list!
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