|Naughty By Nature, not cuz I hate ya!|
So I just completed Cycle 1 of the new NAE clinical trial and things are going well. Having never been on a clinical trial before, I was not used to a pharmaceutical company who runs (and pays) for the whole thing wanting to know every.single.thing about me and my body. That, my friends, means that I am inundated with EKGs, blood work, urine monitoring and vitals almost every day. The first week I had some 8 hour days, but surprisingly they weren't as bad as I thought. I'm working remotely when I'm in the doctor's office and I love my medical team, so we had a lot of laughs throughout the day...as they also apologized about all the hoops I have to go through. But I try to remain humbled because in my 3 1/2 years in this cancer game, I've witnessed so many new drugs become available for this disease, so it's only right that I help partake in a trial that will not only help me, but future patients.
*Clears throat* That being said, I still complained to anyone who would listen about how this trial is messing up my schedule! It was hard for these first few weeks to go back and forth to the doctor every day (as opposed to every month when I was on Revlimid) so patience is definitely needed.
And so far it's working! Although I usually have what us cancer folk refer to as "scanxiety" before a PET scan, this time I didn't...I just assumed the NAE drug would prove to work. For me, I usually respond to the first few cycles of a new drug and then have problems further down the line. But I shouldn't take a good response lightly as I realized that it may have not worked and we would be back to square one. In a clinical trial you get PET scans far more often than you would in an FDA-approved treatment (where you usually get scans every three months), so one month into the trial, my cancer has decreased by 14-15% which I'm told is good.
Now as I start Cycle 2, I will only have to go in twice a week for treatment, which makes me very happy. The main side effect with this NAE inhibitor is bone or muscle pain, which for cancer patients, feels exactly how you feel when you take a Neulasta injection. But with Neulasta, the bone pain makes sense because your bone marrow is pumping up your white blood cells, thus the pain. In NAE, they are not sure why this happens. I wasn't too worried about the bone pain going into the treatment and neglected to fill my prescription of hardcore pain meds after the first day (as my nurse practitioner told me to) because I assumed I would be ok. Uh no. For people who are so lucky to not have experienced a Neulasta injection, I have been describing this feeling like working out with Jillian Michaels on The Biggest Loser for 10 straight hours. Sooooo sore! That first night I was cuddled in a ball on the bed, shocked by the pain I felt in each of my muscles, from my toes to my throat. For me, the annoying thing about bone pain is that you feel like you got a good workout in, but in reality all you did was sit in an infusion chair. Usually I like to feel sore after a workout because that means I really did something, right? But pain and no workout? Sucks.
Luckily it seems to subside by the next day and for my 2nd treatment, you better believe I had my pain meds in hand. They definitely help, although they also make me uber sleepy...that kind of drowsy you get from cold medicine. It's such a strange process. I got a little sad the first day because it's been so long since I've had side effects, plus I was nauseous, so all I could think is "#$&*%". LOL! Every curse word in the world ran through my brain because emotionally I'm pissed. I kept thinking that I wasn't supposed to be at the doctor's office right then, right in that moment. I was supposed to be at work and taking Revlimid each night.
Today I had a lot of bone pain from my treatment yesterday. It's so strange...I'm perfectly fine right after treatment...so much so that I totally forget I even had a treatment until about 6 hours later when it just hits me. The pain comes on slow...like an ache in my shoulders and my triceps...and then it spreads to my legs, my stomach and my back. I swear I feel like I should be super toned after this trial based on how much my muscles hurt! It's so crazy. I keep flexing my arms in the mirror when they hurt because it legitimately feels like I was lifting weights with the big boys.
So that's it for now...despite the pain, I seem to be tolerating the drug pretty well and it doesn't affect my blood counts too much. So we will stay on this path and see where it takes us!