I finally took part in that Dana-Farber and University of Rochester Medical Center (URMC) research study yesterday–evaluating the long-term health of men that have been treated for germ cell cancer with cisplatin chemotherapy. This visit was scheduled for December, but I mistakenly double-booked my calendar with one of Jess’ ultrasounds. Needless to say, the ultrasound was a tad more important. For those that haven’t seen Jess’ blog, the boy was 3lbs 7oz, and the girl was 3lbs 1oz. The c-section is scheduled for March 13!
The research appointment began at the Yawkey Center. After the pleasantries, the research assistant flipped through her paperwork and stated “we’re going to be taking a lot of blood from you today.” Oh my. I replied with a nervous laugh and a “…did I mention my dislike needles?”
Thankfully the phlebotomist was flawless in execution, and the researcher’s presence gave me reason to keep my jaw flapping and otherwise distracted from the tray of viles on my right.
The next step was to visit Brigham and Women’s for a hearing test. The room was small, maybe 8’x8′ with low ceilings and a door that resembled a walk-in fridge. I put on a pair of bulky headphones and was handed a wired, push button remote. The researcher and technician relocated to an adjacent room separated by a glass window. Press the button when you hear a beep. Left ear, right ear. Repeat the words spoken. All uneventful including the result. My hearing is normal.
I completed an at length survey regarding well being and habits. Two things, I’ll mention. First, the alcohol consumption question had incorrect/incomplete ranges for me to answer correctly. I brought this to the attention of the researcher. I believe the running joke is that you tell your primary care physician how many drinks you consume per week, and he knows you’re lying, and then doubles it in his records. However, for science, I wanted to answer truthfully. I either had to choose an answer of “drinks per day,” which would make me look like a raging alcoholic, or “drinks per week” with a range that was not right either. The second thing is regarding side effects, and the purpose of this study. The only thing I continue to have is the cold/tingling hands and feet, also known as Raynaud’s disease. This isn’t new, it started immediately after chemo. Hopefully the URMC and Dana-Farber researchers will discover new ways to reduce incidents of Raynaud’s for future patients. In the meantime, no big deal.
I had my fourth annual checkup and CT scan today. All results were healthy. I have one more CT scan in my foreseeable future next December 2014 which will then mark five years post diagnosis/treatment. Assuming the 2014 results are normal, I will only require an annual chest x-ray and blood draw for a biomarker check for 2015 and beyond.
I signed up for a Dana-Farber and University of Rochester Medical Center (URMC) research study titled “Genetic Susceptibility and Biomarkers of Platinum-Related Toxicities” during my visit today. This study is evaluating the long-term health of men that have been treated for germ cell cancer with cisplatin chemotherapy. The researchers claim that small amounts of cisplatin remain in a patient’s body for years after treatment and this study is seeking to identify the side effects. Dana-Farber is contributing 275 patients to the study. I will be coming back to Dana-Farber next week for a blood draw, hearing test, and questionnaire for the study.
Full steam ahead on the twin babies front. Jess prefers the names Keano and Reeves after her favorite actor, but I’m on the fence.
The two patients seated adjacent to me make my 9-week chemo treatment seem like a joke. The first has 6-weeks on, 2-weeks off, repeated for 6 months. The second person is undergoing chemo indefinitely, as it treats, but will never cure his combination of colon and lung cancer. I think it is important to keep this in perspective, as this will be just a “remember when” story for me after August.
I’m getting all three chemo drugs for the first time today: Bleomycin
, Cisplatin and Eposin. My arm is cold from the IV but other than that, I’m feeling good. Zofran took care of my stomach funk.
My treatment today included cisplatin, the “P”, and Eposin, the “E” of BEP chemo- neither of which caused any recognizable side effects while at Dana-Farber. There were a bunch of patients who got sick- immediately after eating lunch. I was given a “heavy dose” of Zofran, which may explain why I didn’t feel anything.
Once I got home, I took Bruno for our normal 2-mile walk and started to feel unusually fatigued. I’m not sure if it is because of the drugs or because I woke up at 4 AM. I will go to bed earlier tonight just as a precaution.
I took my nurse’s advice to shave my head in advance of the hair falling out. I will also lose my eyebrows, but I’m sure as hell not going to shave those off in advance! I’m not sure if I’m going to use eyeliner, AKA “guy-liner”, but I’ll have Jess determine what looks the most normal.