A year ago, at age 67, I was diagnosed with advanced stage Prostate Cancer. PSA was 28.5 and I don't remember the Gleason score for certain, but I think it was 6 [Whilst the "Golden Rule" of prostate cancer is "There Are No Rules" it would be very unusual for a tumour with a Gleason Score of 6 to have the characteristics described below by Ronald.]
I went to the doctor because of frequency of urination (particularly at night), pain in the pelvic region, lower back and hips. It had been two years since my last PSA (normal), so without any further examination or test, she ordered a PSA. (28.5). Then referred me to an urologist.
A biopsy was performed and revealed that the 12 samples were 100 percent affected. A tumor was outside the prostate gland on the left node and the seminal vesicles' were affected. In discussions with the urologist that performed the biopsy he stated that he believed that I had not had the prostate cancer for very long and that it was aggressive. I don't know what he based that on.
I was referred to an oncologist who ordered a bone scan and CT scan. The bone scan was negative. The CT scan verified the biopsy with the addition of Lymph Node involvement in the pelvic area. I immediately began ADT with Lupron injections.
The treatment was initially positive but the Lupron failed in 6 months. PSA went back up to 19.3. A CT scan revealed that the cancer had spread to additional lymph nodes, particularly to the back, near my kidneys. Good news was that it had not invaded any organs. There are no symptoms of bone metastasis at this time.
In the discussion about treatment options, it was decided that I would try Casodex for at least a month to see if it would bring the PSA down. Lab work after 1 month showed the PSA down to 3.3, so I continued on Casodex. Four weeks later it was down to 0.19 and has continued to stay low up to this date.
The side effects of the Lupron that I experienced were hot flashes, fatigue, and weight gain. I also experienced some mental instability such as moodiness, irritability and overreaction to small irritants.
The hot flashes, fatigue and weight gain continue with Casodex, but my mental attitude is much better.
I have learned that there are no certainties when it comes to this disease. When you receive bad news, don't get too low. When you receive good news don't get too high. Face life with a positive attitude and enjoy each day that you have.
I went in for blood work and a checkup Monday (7/09/2012). With a PSA of 0.22 all appears well at this date. I go in 7/25/2012 for CT scan and bone scan to make sure the PSA reflects what is really going on. After the experience with Lupron, Dr. is being cautious. I continue having hot flashes, gaining weight and tire easily.
In July 2012 Ct Scan showed increase in tumor size near the renal arteries. Bone scan was negative. I am currently taking Casodex. At the time of the CT Scan, My PSA was .23. It has risen to 1.1 as of this date. I am feeling well and enjoying an active life.
About a year ago, Casodex failed. PSA had gone up to 5. Ct scan and bone scan revealed numerous additional lymph node involvement and additional bone Mets. I was put on Zometa and Firmagon. I didn't have any confidence in the Firmagon because Lupron had previously failed, but the ONC insisted. PSA continued to rise. When it reached 12, the ONC put me on Ketoconazole, 600 mg a day, with Hydrocortisone and continued the Firmagon and Zometa. PSA had an immediate drop to 2.3. Current PSA is at 0.40.
I have bone pain in my Left Femur and Ribs occasionally. I have Hydrocodone for pain as needed.
There is no sign of liver damage from the Keto. Bloodwork is checked every month.
Bone Scan and CT Scan 2 weeks ago (12/15/13) was almost the same as the scans done a year ago.
I continue to be active and the medication and cancer has minimal effect on my activities.
I had another CT scan and Bone scan Feb. 21 2014. The bone scan showed an uptake to the spot on the left femur and enlargement of the spot on the L5 vertabra. Other affected areas were the same as 3 months ago. The CT Scan showed some lymph nodes decreasing and others increasing. In particular the Lymph nodes in the groin area had increased in size. I am scheduled for another ct scan in 2 months. If it indicates increased size in any of the lymph nodes(Groin Area in particular) , then a biopsy will done to verify if the enlargement is due to cancer. My oncologist believes that despite the low PSA (0.28), I am nearing the point of change in treatment. I am currently taking Ketoconazole with hydorcortisone, Firmagon monthly, and Zometa monthly. I have intermittent pain in my left leg and spine and I have been experiencing trouble going to sleep. Medication has been prescribed to take care of these problems. I remain active pursuing my hobbies and fell well most of the time.
I would like to correct something in my first report to this site. I was going through my lab reports and came across the original biopsy, which I had believed lost. I originally reported a gleason score of 6 but it was 9 (5+4). The urologist told me the cancer was aggressive. Now I know why.
Since I last reported in on March 2014 my condition has surprisingly shown some improvement. Despite the Onc's prediction of changing medication I have continued with Ketoconazole and changing from Zometa to Xgeva and I continue with Firmagon injections each month despite my objections, the Onc insists. This time last year I thought I was on a slippery slope to the grave, but I have a much better outlook now. PSA remains at an average of 0.35. PET scan about 6 months ago did not show any lymph node involvement outside the pelvic area, or any soft tissue involvement. The enlarged Lymph nodes in the groin area have remained the same (no growth). Ct Scan last month verified the Pet Scan. The bone scan of a month ago continues to show growth in the same areas, indicating persistent Bone Metastases. Since beginning with Xgeva, bone pain has lessened a great deal. The 4 years of ADT is beginning to take its toll. My energy level is way down, strength down and unable to lose weight. The last bone scan showed some bone deterioration. However I consider myself fortunate and continue to enjoy life without too much discomfort.
Cancer is stable. Scans show no additional cancer. No bone pain in 6 month. PSA is stable at 1.02.
I have continued with Firmagon, but had to drop the Xgeva due to Osteonecrosis of the jaw (ONJ). I am also still on Ketoconazole and hydrocortizone. The oncologist has seen some indication that the Keto and Firmagon are failing. PSA went from 1.00 to 1.23. Bone scan indicated some growth to existing tiumors and the addition of some rib spots. Blood work will be done the 10th of August. If the PSA and other markers continue to change, we will discuss to possibility of changing to either Zytiga, Xtandi, or Chemo.
I continue to feel well and am active in my hobbies. Fatigue is a problem because I tire easily and have to pace myself. I have some minor pain, but not serious enough for strong pain meds.
I had some difficulty with the ONJ due to infection. Three months of antibiotics took care of that. I have exposed bone in my lower jaw that has remained stable for six months. Twice daily mouth rinse of Antibiotic mouth rinse has prevented any further infection as of this date.
It is my opinion that long term use of Zometa and Xgeva caused the ONJ. I would caution all cancer patients to beware of the use of this drug. The oral surgeon that is treating me has indicated that he has seen a very sharp increase in this disease due to use of these drugs.
Ronald's e-mail address is: reo4844 AT yahoo.com (replace "AT" with "@")