Two Weeks with Afinitor and Aromasin

Two words: mouth sores! Yikes! They started forming within the first few days of taking the meds. Unfortunately, they progressively got worse. I cannot say that I have ever experienced anything like this.

As the sores grew bigger and multiplied, I assumed that this was the natural way that these medications were going to take their course. So what did I do? I just grit my teeth and took it. Actually, I couldn't grit my teeth because my mouth was too swollen to allow my teeth to rest the way they naturally would. I sat in silence and was grouchy. Pain does that to me.

Unfortunately, I couldn't tell my family, in words, that I was grouchy and that they needed to stay away from me. So, I grunted and made a lot of hand and facial gestures.

At the beginning of last week, my husband and I were blessed to attend the youth/college retreat. It was during our time there that my nurse called and asked me to come in to the office. She had been on vacation when I had met with my oncologist, so she wanted to make sure that she went through all the details of the meds with me. Felt like that was a God-send. He knew that I needed to get it checked out. I shudder to think of how I long I might have waited to call.

Could I have told her about my mouth sores when she called? Yes.

Did I? No.

Why? Because I thought that I could wait and tell her when I saw her. It wasn't as bad at the time. 

Well, things progressively got worse. I had to cut food really small to eat it. It took me, like... forever, to eat anything. I had to keep moving my head to readjust food in my mouth. I also found myself closing my eyes as I chewed and putting my hand over my mouth. It must have been quite a sight.

By Thursday of last week, I was in all out pain. I couldn't eat. Or talk well. I tried eating one fourth of a banana, that was cut up, but I couldn't. The banana stung my sores. Okay, okay, I'll admit it - I shed a tear or two. FRUSTRATION! Then, I became so desperate that I mashed up the banana and determined in my heart that I was going to eat! The method that I found that worked: I tilted my head back, gingerly dropped some mashed banana into the back of my throat, and just swallowed it. Chewing required too much pain. This method helped me eat that one fourth of a banana in 15 or so minutes. At dinner, I pureed some jook or congee (that my husband made for me) and was able to eat a few spoonfuls with the head tilting method. That stuff is thick, but swallowable. Is that a word?

Then, we get to Friday. I was supposed to see the nurse at 10 am, but I was too weak to drive. I usually drive myself to doctor visits because I know how busy my husband is. But this time, I had to ask. I didn't even have the energy to talk. I just sat in the car. My husband tried to ask me a few questions, but I didn't have the energy to answer. I just grunted.

When I saw my nurse, I was a complete mess. I couldn't talk well. I had no energy. I felt like I could topple over. My mouth was in high level pain. I ended up staying there for an extended visit because she had to hook me up to an IV. Never had that happen to me. Without the calories in my stomach, I could barely keep my eyes open. I ended up falling asleep during that IV, but when I got up, I felt so much more energy. Enough energy, at least, to get home.

I got in trouble from my nurse. She told me that I was supposed to let her know about stuff like that because she was there to help me. Learn from my mistakes if you are on these medications. Call your nurse when "funky" things start to happen.

My nurse prescribed "Magic Mouthwash." It is supposed to help numb your mouth, so that you can eat, and help heal the sores. I was afraid to read the ingredients. It turned out to be an antibiotic, antihistamine, antacid, antifungal, and steroid concoction. You know how I feel about steroids and extra meds. BUT, I did not care, because I needed something to help calm the craziness in my mouth. I have been using it for the past 4 days, and I can say that it has helped tremendously.

Afinitor (Everolimus) and Aromasin (Exemestane)

Sunday, I started my new medications. There are two pills that I have to take: Afinitor and Aromasin. The Afinitor is a cancer drug that is supposed to interfere with cancer cell growth. It is also supposed to slow down the spread of the cancer cells. The Aromasin is a hormone drug that is supposed to decrease the amount of estrogen in my body and help reverse the growth of the breast cancer. The combination of these two drugs has been shown to work well in patients like me: post-menopausal, Estrogen positive breast cancer.

I have to take these drugs once a day, one pill each, at the same time everyday. It was difficult trying to figure out the time of day I should take them. I take my Levothyroxine (for my thyroid) in the morning, so I didn't want to take anything else during that time. The Aromasin requires food while the Afinitor doesn't, so I finally settled for dinner time (6:00 pm). I can shove some food in my stomach, take the medicine, and then eat the rest of the meal. I had to set the alarm on my phone, because I will forget. If you see me around 6:00 pm, remind me.

Taking new medication always brings some anxiety about the side effects. I just never know what to expect. To be honest, when I got the medication in the mail, my stomach turned over a few times. I was reminded of the Xeloda that I started taking over a year ago. Just thinking about those Xeloda pills makes me nauseous.

I am on my fifth day of taking the Afinitor and Aromasin. The first few days I felt like I had a "buzzy, force field" around my head. I felt weird, but I couldn't describe it. One of the side effect is mouth sores, and they have already formed. That was quick! The craziest side effect of all: "fruit-like breath odor." Who would have known? I don't have that... yet. We'll see.

Summers

I don't know about you, but my summers are crazy. So many things to take care of. So many things to help with. So many events. So much of a lot of things with chemo in between! Too many things for this low energy gal. 

To fast forward what has been happening in my life:

• I got my photos back! The Apple store referred me to a data recovery company that said it would ONLY charge me $945! I cried. I prayed. Then, I started looking online and found a recovery program. It cost me $90, but it was music to my ears after hearing the other quote! Those of you with any type of Apple product: back up everything before doing an update! Updates can turn your life upside down! If you were wondering, my brother and sister-in-law got us an external hard drive. My pictures are now backed up. 

• My hair has been growing back. I have a fuzzy head. A1 likes to come by me and rub my head. It does feel soft. I might be able to put a baby pin on soon! It's growing out all crazy, but it is good to see hair on my head again!

• Our family got to go to Washington D.C. for an annual Korean pastor's meeting in our denomination. We hadn't been able to go to one for over 5 years. It was a long drive, but it was beautiful. I even drove through Pennsylvania!

• I haven't been able to bake a lot which makes me a bit sad.

• Little things here and there add up to major fatigue for me. I still have a hard time pacing myself. I push myself like I used to (pre-cancer) and then I crash. Not good. Why is this so hard?

• The most exciting news: I have my last chemo treatment (for the time being) today! The cancer in my liver hasn't spread and has shown a bit of improvement. My oncologist wants to give my bone marrow a chance to recover. I will be taking a "stronger-than-hormone-pill" pill - if my insurance covers it. Still waiting. Chemo at 8:00 am and then the Neulasta shot on Tuesday. Got to take the Claritin!