THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.
In February, 2012, I saw my family physician because of difficulty urinating. He did not do an exam or a PSA test but put me on a prescription of Finesteride.
On October16, 2012, I again saw my PCP because of painful urination. Within two weeks I saw a Urologist at which time my PSA was 27. I was told that the 27 really equalled 54 because I was taking the Finesteride. At that time I reported blood in my urine and stools. I was referred to a urologist who did an exam and ordered a bone scan and a cat scan and advised me that I probably had prostate cancer. On October 31, I had a biopsy which was extremely painful. On November 13, the doctor had ordered x-rays, and a bone scan on November 15. On November 15, I returned to the Urologist and was advised that my Gleason score was a 7 (3 + 4) and a 9. Was advised that I did have cancer and it had mestasized to the skull, spine, hips, and pelvic area. Prognosis was 1 year to 18 months if I received no treatment. Four to five years with treatment. Urologist advised against surgery because I was already in Stage 4 Prostate Cancer and that removal of the prostate could cause more problems and side effects than leaving the prostate in. He recommened Androgen Deprivation Therapy. He also recommended that I see a Radiation Therapy physician to ascertain the depth of cancer in my hips.
On November 28 I saw my Medical Oncologist and began Lupron shots the following week. I will receive these shots every 3 months for a year. On December 6, I saw the Radiation Therapy physician who after checking x-rays did not believe that I needed radiation therapy for my right hip at this time.
By January 2, 2013, my PSA had dropped to .40 when it had been 3.39 in December. By February I was beginning to have a lot of pain in my hips. The Oncologist suggested radiation therapy for pain control. The Oncologist also suggested that I start taking Zometa which helps strengthen the bones. On March 5, I had my first Zometa infusion. I was advised of the side effects and that evening I was hit with extremely bad bone pain. This pain lasted for 4 days without letting up. I took 10/325 Hydrocodone throughtout this time.
On March 14, the Radiation Therapy physician advised me to start radiation for pain control in two areas - the top cervical area of the spine and my right hip. I was to have 10 treatments for 2 weeks once a day. I was advised that side effects could include diarrhea, upset stomach, sore throat. Because my first wife had radiation for breast cancer and had been burned, I talked at length with the physician about this. He assured me that it was very unlikely that I would be burned because of the low dosage. My first radiation treatment was on March 25. After my second radiation treatment I was in extreme pain 15 on a scale of 10. My shoulder was hurting and burning. By March 26, I wanted to cancel the radiation but the resident convinced me to continue treatments. Fortunately the week end was close and I had 2 days without treatment. I completed the radiation treatments on April 5. I was totally exhausted for the next two days.
On April 3 I also saw the Oncologist again to get my second Zometa infusion. Insurance companies are a problem sometimes in America and my particular insurance company didn't want me to take Zometa so the doctor switched me to Xegeva which is more expensive. On April 9 I woke up and found it extremely difficult to swallow. As the day progressed I got to a point where I basically could not swallow without having a pain level of 12 on a scale of 10. On the 10th of April I saw the Radiation Therapy physician who acted as though I should not be having difficulty swallowing. He finally said he would prescribe something called Pink Magic which has lidocaine in it. The Pink Magic would anesthesize my throat for about 5 minutes at most. In the week that followed to today, I have lost 10 pounds and basically been unable to eat anything more than a few bites of scrambled eggs, or creamed potatoes. On April 15, my wife pleaded with my Oncologist's office to see if they could do something since the Radiation Therapist did not seem to know what to do. I was able to get a script for liquid morphine today which has helped considerably. For the first time in 7 days I was able to eat. Needless to say, I do not want to have radiation therapy again for fear of burning my throat or esophagus. My Oncologist wants me to have an EGD to ascertain the damage done by the radiation.
So that is my story at this time. Unfortunately, it seems that every treatment I have results in very painful side effects. I usually have a high pain tolerance so of course this is troubling.
Roy's e-mail address is: lindastaller AT gmail.com (replace "AT" with "@")
NOTE: Roy has not updated his story for more than 15 months, so you may not receive any response from him.
