My story begins in the fall of 2009 when my primary care physician, Dr. Raduege noticed my prostate was enlarged during a routine checkup. A PSA blood test was ordered for further evaluation and the results came back with a value of 13.8. Raduege failed to notify me or provide any kind of follow up for my elevated PSA. At that time, I barely even knew what a prostate gland was, or that I should be concerned about a PSA of 13.8.
In December 2010, the day before I was scheduled for my NEXT routine checkup, I received a call from Dr. Raduege notifying me that my PSA was now 50.5 and that he had missed the 13.8 indicated by the previous test back in 2009. He said he was sorry and regretted not catching it the first time and I needed to make an appointment with a urologist to find out if I had prostate cancer.
In January 2011, my prostate biopsy came back positive for cancer with a Gleason score of 9 (4+5). In addition a Periaortic lymph node biopsy also tested positive for prostate cancer. I had a bone scan which showed NO metastases there. I was told by the urologist, radiologist and oncologist that surgery was not an option because my cancer had spread beyond the prostate. The radiologist was reluctant to treat me because there would be too much collateral damage to the area surrounding my prostate from the radiation. The oncologist told me that no treatment would be curative and that I had about five or six years to live. He said my best option was to start hormonal therapy and when that failed in a few years to move on to chemotherapy.
My wife and I practically ran down to the Seattle Cancer Care Alliance to get a second opinion. I saw Dr. Peter Nelson, a prostate cancer researcher and oncologist. During our visit, both my wife and I noticed a big difference in how doctors and staff treated us compared with how we were treated in Bellingham: They related to us like we were real people, rather than in the curt, dismissive manner of their Bellingham brethren. Dr. Nelson suggested I join a clinical trial of a new prostate cancer drug called Aberaterone (zytega). He said there is some evidence that Aberaterone could be curative for some prostate cancer patients. I agreed to enroll in the trial, one catch being that our insurance company would have to agree to pay the costs associated with it. Our insurance company, Group Health Cooperative refused. I even offered to pay for services at the center out of my own pocket, but without my insurance company on board, I could not be accepted into the trial.
During all this time, I delayed starting treatment because it would have jeopardized my eligibility for the clinical trial. So about two months were burned up and I STILL had not started treatment! It was now March 20, 2011 and my PSA was 123.8 . After nearly 2 anxious months of appealing and hoping that Group Health would change their minds, it was time to move on and start hormonal therapy with my local oncologist here in Bellingham. I started with Casodex (bicalutamide) and then a 12 week shot of Lupron . Luckily within six weeks my PSA dropped to 36.8. Unfortunately the side effects from the drugs caused severe hot flashes every 20 to 60 minutes, 24 hours a day. I went from feeling cold to breaking out in a sweat constantly. This made sleeping very difficult and left me feeling exhausted all the time. I even tried acupuncture to alleviate the hot flashes but it did not help.
In May 2011 I read a book called ''Beating Prostate Cancer: Hormonal Therapy and Diet'' by Dr. Charles Myers, a Virginia oncologist who specializes in the treatment of prostate cancer. With my local oncologist permission I started taking Advodart (dutasteride) and increased my Casodex to 150 mg a day.
In Dr. Myers' book, this is called the "triple blockade" strategy. Unfortunately my body did not tolerate the increased dosage of Casodex and within a month my blood test showed elevated liver numbers. I also felt physically beat up in addition to the ever-present hot flashes. It was time to make an appointment with Dr. Charles Myers in Virginia.
In August 2011 I had my first appointment with Dr. Myers. He devised a treatment plan with new medications, supplements, lab tests and diet to be implemented in collaboration with my local oncologist. The new plan was a dramatic improvement over the prior one. Vivelle estrogen patches eliminated most of my hot flashes, and by August 23 my blood test showed my liver numbers to be back in the normal range. I stopped taking Casodex completely and started Ursodiol 300 mg to protect my liver. Dr. Myers also prescribed Ketoconazole and Hydrocortisone as a secondary hormonal blockade. I remember two things from that first meeting with Dr. Myers: he said that I should be lit up like a Christmas tree with bone mets on my bone scan based on my High (9) Gleason score and my high PSA. The fact that I wasn't, meant that this cancer was a bit of a different animal. Secondly, he said if we do everything right I think we can put your cancer completely behind you give you back your life.
In order to more accurately assess how much cancer had spread outside my prostate Dr. Myers sent me to Sand Lake Imaging in Orlando, Florida. The imaging included a MRI scan with Feraheme, a PET scan and a CT scan. The results from the imaging were very hopeful because only three lymph nodes were found to be cancerous and they could be successfully treated with radiation. I was told this by Dr. Steven Bravo who runs Sand Lake Imaging. By late fall of 2011 my PSA was down to 0.98 and my prostate gland had shrunk considerably. I was ready to start the third phase of Dr. Myers treatment plan at the Dattoli Cancer Center in Sarasota Florida. The only problem was that our insurance with Group Health would not pay for my treatment there.
Because my wife is a federal employee (postal carrier), we were able to switch our health insurance carrier to Federal Blue Cross Blue Shield during the Open Season. Blue Cross covered the costs of my radiation treatment at the Dattoli Cancer Center in Sarasota Florida (try THAT with an HMO!). Starting in late January I had a total of 37 sessions of EBRT then in March Brachytherapy seed implants and 3 months later 10 more sessions of follow up EBRT. My side effects from radiation were tiredness, diarrhea, urgency to void, trouble urinating even though I avoided caffeine and other bladder irritants. The care and treatment from the staff at the Dattoli Cancer Center was excellent and I got a lot of support from the other patients and their wives. While there I met quite a few patients who had their cancer come back in spite of having an undetectable PSA for 6 to 12 years.
By August 14, 2012 my PSA was down to 0.22. Radiation treatment was over but ADT (hormonal therapy) continued with Lupron , Avodart, Ketoconazole and Hydrocortisone. The drugs were taking their toll on my upper body. Before been diagnosed with cancer I had been in great shape but now was struggling to keep up with my jogging. I also started napping after lunch because I was so tired most of the time.
On August 28 my wife was hit by a car while crossing a road as a pedestrian. She had to be flown to the trauma ward at Harborview in Seattle. She was on a respirator and had broken quite a few bones but amazingly had no brain injuries or paralysis from the accident. After three weeks she was released but would be required to use a wheelchair for the next 3 months. I became her primary caregiver with some help from others. I was able to make it to see Dr. Myers in October and he prescribed Xtandi to replace ketoconazole and hydrocortisone. Xtandi is much easier to take and has fewer side effects than keto but retails for about $8000 a month. Trying to make sure our insurance would pay for this medication became a huge priority. We decided to switch insurance in 2013 for this very reason.
In April 2013 both my wife and I went to see Dr. Myers in Virginia. By this time Sally had made an amazing recovery from her accident and was almost ready to go back to work as a mail carrier on her walking route. My PSA was down in the 0.023 range. The goal was to get it down to an undetectable level and Dr. Myers said everything is going well and we just needed to be patient. We also visited that Dattoli Cancer Center for imaging checkups. The scans and 3-D color Doppler rectal exam all looked good.
By August my PSA finally reached an undetectable level of <0.015 ! 3 months later in 11/2013 I went off all hormonal drugs except Advodart.
I had my annual check up with Dr. Myers. The check up includes a complete physical because Dr. Myers doesn't want his patients to die from other illnesses. My PSA continues to be undetectable. I have gained 10 pounds in the last 12 months and now I am just right according to the charts. I am to start taking Losartan 50mg because a test indicates I have stiff arteries. I also have had some chest pain in the last 12 months. To reduce scarring from the effects of radiation treatment Dr. Myers prescribes Trental 400mg. Ironically my hot flashes have returned since I have gone off hormonal therapy. I am to go back on the Vivelle estrogen patches and then slowly reduce the dosage to wean myself off. To date my testosterone levels have not recovered and I still feel like I'm on Lupron. All in good time.
My PSA continues to be undetectable. I stopped ADT3 17 months ago and my testosterone has partially recovered to about 200. Hot flashes are still a problem but their intensity and frequency have lessened.My chief complaint is problems with my feet. I have numbness and tingling in the morning,particularly in my left foot. Low vitamin B12 levels could be causing my feet problem. Dr Meyers will be looking at this. He has also started me on Metformin - 500 mg 2 BID. Recent research has shown that Metformin has preventative action against many types of cancer. As an upside, people taking metformin also tend to lose 5 - 15 lbs. Myers has also recommended taking the nonprescription antacid Famotidine 20 mg 1 BID, to help my immune system recover from the damage caused by my radiation treatment back in 2012.
My recent annual visit with Dr. Meyers went well. My PSA continues to be undetectable. My Testosterone has reached 250 on 4/1. Still having hot flashes but not as frequently. I stopped Losartan and Curcumin and added vitamin B6 plus Alpha lipoic Sustain to help my peripheral neuropathy in my feet. Since Jan. I've been running 3 miles 2x/week and feeling good. My lab work will now be every 3 months and will only be Testosterone, PSA & vitamin B12.
My testosterone total was 275 last month, up from around 225. Still below normal but slowly climbing upward. My PSA continues to be undetectable all good news. I'm now 5 years out with a PSA of <0.015 and Dr. Meyers informed me that in another 12 months the chances of my cancer coming back will be only 5%. So things are going well.
Dr. Myers is going to retire in November. So I will be looking for a replacement in the Seattle area. No more trips to Virginia. I will miss him and forever be thankful for his great care as my ''Uberdoc''.
My PSA continues to be undetectable and the only drug I contine to take is Dutasteride (Avodart).
Since Dr. Myers retired I have been looking for a new Prostate cancer oncologist and found one this Spring at the Seattle Cancer Care Alliance at the University of Washington Medical Center. His name is Dr. Peter Nelson. I will be seeing him annually or sooner if needed. We discussed my discontinuing Dutasteride and possible testosterone replacement therapy. His advice was to wait and see if my testosterone level will go up to around 400 without intervention. It has recovered to around 275-300.
My wife and I are happy to have found a new doctor and hope my cancer stays in remission.
My testosterone level continues in the 275-325 range. I have recently cut back on my Avodart medication to only 3x per week. It was one pill (.5mg) every day. I will be monitoring if my Dihydrotestosterone level is affected. So far it's too soon to know.
After 6.5 years of undetectable PSA my lab results showed a detectable PSA of 0.03 this January. Since then my PSA has increased to 0.16 . I have changed from quarterly testing to monthly. The only change since my last posting was in June of 2019 I reduced my intake of Dutasteride from 1xday to 3xweek. I resumed Dutasteride at 1xday this June 2020. If my PSA continues to go up I will be having a PET scan done at about the 0.5 value. I will be checking in with Dr. Nelson in Sept., We last spoke over telemedicine in June.
I restarted lupron and Xtandi in Febuary 2022. My PSA had gone from ''undetectable" to 3.39 in ~ 2 years.
I had a bone biopsy done in January 2022 which was positive. Various scans including a PSMA PET showed a return of my cancer in varius bone sites. There was no indication of cancer in lymph nodes or in my prostate.
My PSA is down to 0.04, I run or walk 3 miles/day. I also started Xgeva for bone loss ~1.5 years ago.
I am tolerating Lupron and Xtandi much better now than the first 6 months.
Jim's e-mail address is: drakenje AT gmail.com (replace "AT" with "@")
