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.
Hi Folks. It has been a long time since I’ve updated you here. Big positive news on my end. My wife and I went through fertility treatment i.e., in vitro fertilization (IVF) over the last few months, and now have twins on the way! If you’re interested in learning more about the IVF process, take a look at Jess’ blog at: http://jessicastetson.blogspot.com
I had my annual check-up at Dana-Farber today. The CT scan and blood work came back normal. As always, I didn’t like the IV, but it went in easier than I expected. The only downside was sitting in the waiting area with it in my arm for over two hours. Although I made it to the appointment on time, some of the radiology staff got stuck in pretty bad traffic. You can’t do much about that. My next DFCI check-up will be a year away, December 10, 2012.
Researchers at UC Davis published findings last week that linked CT scans with an increased risk of secondary cancers in men with stage one testicular cancer. While this may sound alarming, we need to pause for a moment and realize that CT scans play an important role in diagnosis and surveillance. That being said, this should be a topic of conversation with your oncologist, and it will be with mine in June.
I received news from my primary care physician regarding my fertility lab results. Not good, but somewhat expected. I’ve got severe oligospermia, which means having kids the good old-fashioned way isn’t going to happen. The normal counts are 20 million per milliliter. I’m at 700,000 per milliliter. Prior to chemo, the sperm bank stated that my counts were low, but I can’t recall what the numbers were. The good news is that there still is an option available, it is called Intra Cytoplasmic Sperm Injection (ICSI). That means a test-tube baby (e.g., one sperm, one egg, fertilized outside the womb). Jess and I are going to find out more information about this. I imagine our insurance company will have an elaborate vetting process for such an expensive procedure.
I went in to Dana-Farber for a 3-month checkup today. First, the new Yawkey Center is amazing. The interior of the building resembles more of a modern hotel than a hospital. The waiting areas are extremely open yet still quiet and comfortable. The only slight I have about the new building is the difficulty of finding appointment locations. I’ll admit, I’m somewhat directionally challenged, however it would have been helpful to know that my appointment locations had changed prior to arrival. I was already running late because of weather related traffic and I probably burned near 30-minutes on foot trying to find my first stop of the day. Thankfully, if you appear lost at Dana-Farber, any staff member within eyesight will ask if you need help finding your destination. Also, the receptionists have never given me any grief for showing up late, but I don’t enjoy being disrespectful of their time.
Regarding my tests, I had a chest x-ray and blood work drawn. The blood work shows that I’m clear. The x-ray results didn’t arrive in time for my oncologist to discuss the results. No worries there. We had a quick chat about how my next visit to Dana-Farber will be with my mom, for her own appointment. I mentioned that her oncologist in NH stated that my cancer can be cured, while hers cannot. I pointed out that the folks at Dana-Farber have never said “cured” to me before. I asked if they ever would. It is likely, but too soon for their standards. I’ll be over 2-years from original diagnosis in June. Something like 90% of testicular cancer recurrence will happen by year 2. This means I’m in pretty good shape.
Per the appropriate nudging, I’ve made an appointment to check my fertility. I’m not looking forward to this, but I need to know for certain. My next appointment at Dana-Farber will be in early June. That visit will include a CT Scan.
I had my 6-month checkup at Dana-Farber last Friday. The good news is that my CT Scan and blood work came back cancer-free. Unfortunately, my appointment schedule was switched back to every 3 months. The original switch to 6 months was a miscommunication between the staff- I need to come in every 3 for the next couple of years.
Part of my visit included a discussion about side effects. In the last few months, I have perceived pain similar to what it was like prior to my orchiectomy. This is “phantom” pain and quite common according to my nurse practitioner. I also brought up fertility. There is a high likelihood that I’m now infertile. My insurance company will need it documented before they’ll cover any expenses related to treatment.