Dear Bloodline,
Thanks for your post. It's good to get a wide variety of responses, and that will make this thread more informative for you and other readers in the future. I'll share a bit, based on my own personal experience to add to this thread.
I was also diagnosed with prostate cancer in my 40s, just as you were. My case was advanced, with a PSA over 100, with metastatic nodules in both of my lungs from the prostate cancer. I had been healthy my entire life, so all of this was very unexpected. I'm starting into my third year since being diagnosed.
Upon diagnosis and surgical lung biopsy, I was immediately given Casodex and then LUPRON injections. Month-by-month, I began to see a decrease in my PSA score. As time went on, noticeable spikes in my testosterone level were charted by my urologist and oncologist. Working together as a team, they began trying other hormone shots in a coordinated team effort to lower my testosterone level. Together, they watched over me like a hawk. For my case, working the testosterone down to the lowest level became very important to suppress my PSA.
In cases like mine, even small traces of testosterone can fuel the cancer. So, after being on LUPRON shots for quite a few months, we tried FIRMAGON shots instead. In my particular case, the FIRMAGON shots didn't seem to lower the testosterone levels, as we had initially hoped. Since then, we have now switched over to ZOLODEX shots and finally my testosterone level is at the lowest level it has ever been. It took some time, but my testosterone level has been worked down to below ten, at long last. All three of these types of shots have the same goal: lowering testosterone to the lowest level possible, to help control the cancer and suppress the PSA !
Having both a urologist and an oncologist working and consulting together has been very helpful in my case.
In recent months, Dr. Kwon from Mayo Clinic has also formed a "partnership" with my local doctors, after I went to Mayo Clinic in Rochester, Minnesota, for a consultation with Dr. Kwon. My doctors are very diligent, very proactive, and VERY caring. I feel fortunate and I have a tremendous feeling of gratitude for everything they have done for me.
In my case, having my testosterone levels tested became an important factor in helping to determine the best course of action for my ADT shots. So when going in for lab work, you might consider asking your doctor to order a testosterone test done occasionally, just to check that your ADT shot is working to its full advantage to help suppress the PSA levels.
So, I have been on these three different forms of ADT shots. I'm already on my third year of ADT shots since being diagnosed and also pursued a full round of chemotherapy treatments in recent months. I've kept working full-time and my energy level has stayed completely intact, for which I am thankful. I'm a "night owl" by nature and require very little sleep.
It's always important to share some things we've learned along the way. So, in the interest of helping others, I'll share a few thoughts, simply based on my own experiences ...
After diagnosis, I focused on eating fairly healthy foods. It was easier than I thought and it gave me something I could "control" in the interest of improving my health. I set a goal to exercise each day --- and I've learned that this can be something as simple as going for a good walk in the evening --- try to do something physical each day to keep up your physical strength and energy. I'm a determined person, so I've kept up with my career, hobbies, activities, and charity volunteer projects. Staying connected with my family, friends, work colleagues, community members, and faith have also been important to me.
It's hard for me to believe sometimes, but I now have several close friends of mine that share in my same diagnosis and I have a close bond with each one of them. We're all about
the same age and it's incredibly ironic that so many close friends of mine from different chapters of my life now share in my same diagnosis: friends from my hometown, a work colleague, a church friend, community friends, and now one of my old college roommates --- very close friends that I have known for decades. A strong sense of brotherhood exists between us, to say the least !
When other friends of mine have been diagnosed, the first thing I tell them is that you have to understand that you have to master the mental aspect of being diagnosed, so that you take care of the physical side of being diagnosed. It's important to find a network of support and this website can play a role in receiving support from others and GIVING support in return.
In my case, the side effects of ADT shots are very minimal, for which I am thankful. I drink lots of ice water during the day --- and also cold tea, which adds a little caffeine "burst of energy" during my work day. Drinking just water and cold tea, I'm eliminating extra calories. If you have trouble with hot flashes or night sweats, I would recommend a ceiling fan. A glass of ice water next to your bed can help you, if you have problems with night sweats. During the day, I like to wear a light sports t-shirt, with a loose-fitting Oxford dress shirt over that --- adjust the buttons and roll up the sleeves, as needed.
Do everything you can to maintain your physical fitness levels --- walk the dog, join the gym, ride the bike, get on the treadmill, hike the trail, or whatever suits your interests. Just a simple walk around the neighborhood can lift your spirits and boost your energy level, if you are on ADT shots. Do everything it takes to keep yourself involved in the game and facing forward !
I hope this helps give you an extra bit of insight. Stay in touch with us here, and keep us informed on your progress, Bloodline !
Sent with all my best,
Iowa State ("Cyclone")
Post Edited (ISU-CycloneFan) : 11/19/2015 3:39:29 PM (GMT-7)