I have been very fortunate in the treatment I have received so far and am thankful for all the help received from many doctors and other victims of prostate cancer.
When I was 52 years old I visited a doctor two weeks before Christmas 2003 because of an old problem - scar tissue called a urethral stricture, the result of a cycling accident I'd had at 12 years old. The doctor did a Digital Rectal Exam DRE, felt something and ordered a PSA test. This was my first PSA blood test. December 18th my PSA was 80.3 and with low baseline testosterone 7 nmol/L (or 201 mg/dL) and I had a prostate biopsy and a cystoscopy to dilate the uretheral stricture. The biopsy results came back between Christmas and New Year with all cores positive with the worst two being Gleason grade 4+4=8 and 100% cancer. I was in a state of shock. All the urologists and cancer doctors were away for the holidays so my initial help came from Don Cooley and other subscribers to online support lists, like Judy Thurman, via the Internet.
My wife and I met the urologist on January 5th, 2004. He didn't think surgery would confer any benefit and suggested that Taxotere might be my best option. He arranged appointments at the Tom Baker Cancer Centre in Calgary January 12th, 2004. Since my PSA was now 86.8 hormone treatment (Eligard 22.5mg and 3x250mg Flutamide) was started. The biggest concern was the risk of lymph node involvement. Lymph nodes are the expressways, which allow prostate cancer to spread throughout the body. My bone scan, a sort of X-ray of the bones from the neck down, was negative for bone mets a good result. A further appointment with a medical oncologist spelled out his experience with younger men like me was more aggressive disease and cancer spread to soft tissue, liver and lungs. My treatment plan was decided by a meeting of all the cancer doctors, called the "Tumour Board," and it consisted of radiation and hormone treatment. The cancer centre psychologist suggested courses for the family of the terminally ill. Faced with all this doom and gloom before anything had been tried, I went to a healing service at a friend's church.
I did my research and felt I would rather know the exact facts, good or bad, and I thought my best bet was removal of the cancer by surgery. Not too many agreed with my decision but it is my life. This is called de-bulking as it was unlikely to provide a cure. Experts such as Dr. H.Zinke, Mayo clinic had published showing that removal of the oldest and most aggressive part of the tumour provided increased length of survival. Several correspondents on the Internet mentioned some prostate tumour types - aneuploid, known only if DNA ploidy analysis is done on the tumour tissue, were unlikely to respond well to radiation or hormone treatment. I didn't know what I had. My urologist in Calgary expected to find macroscopic cancer outside the prostate and was very concerned. However, after hearing I was going to Montreal for radical surgery he changed his mind and allowed me to have the surgery in Calgary. I prayed the surgeon would find no gross lymph node involvement and a recent MRI had indicated no suspicious lymph nodes.
This was my first major surgery in 49 years. Three days later I was leaving hospital despite fainting the morning of discharge. I was re-admitted that night with severe abdominal pains. I finally got home 7 days later. The good news was the surgeon found no lymph node involvement and he went "as wide as possible," which meant both nerve bundles were removed, and the pathological stage was pT3bN0MX. The prostate was 30 grams with 70% taken up by cancer. The Gleason score was revised to 4+3 with tertiary 5. I felt what I call nerve effects for a few months afterwards. Further treatment was likely because both seminal vesicles were involved. Usually this would be radiation. The radiation oncologist mentioned radiation following surgery would make the stress incontinence, in the few months following surgery, look like nothing.
Dr. Scholz, who volunteered some of his time to an Internet e-mail list called "Physician 2 Patient" (p2p) at prostatepointers.org, suggested adjuvant Taxotere chemotherapy. This was considered experimental treatment in Canada and the clinical trial was closed to me. So on Remembrance Day 2004 I flew to Los Angeles and started Taxotere and high dose calcitriol treatment. My first treatment resulted in severe Neutropenia, low white blood counts. This result is not very common. I took antibiotics to protect myself from the high risk of infection while the count was very low. Dr. Scholz recommended Neulasta or Neupogen shots and the Calgary medical oncologist agreed to prescribe Neulasta for each treatment cycle. It cost me $2,500 for each shot. About 5 or 6 days after the first shot I had paralytic pain - I couldn't move without hurting. I had no pain killers and iubprofen had absolutely no effect. I was told later that this was most likely a Neulasta side effect.
I had a lingering cough after exercise for several months and assumed it was grass allergies. The Dexamethasone steroids, given for the chemo, gave me a false sense of confidence, I could not only walk without coughing but I could run too. I say false sense of confidence because after a 2 minute run, in an exercise study for men on hormone therapy called PALS, I had a wheezing cough lasting 2 to 3 hours. Later that night I put up outside Christmas tree lights, for Christmas 2004, and came inside with left-side chest pains. They didn't go away over the next few hours and I was told to go to hospital emergency. I was kept overnight due to a positive D-DIMER blood test. An ordinary CT scan also showed coronary artery calcification.
Fortunately nothing bad happened and I flew down to Los Angeles December 23rd for my 3rd cycle of Taxotere. I completed all 5 cycles of chemo, which included Taxotere 70mg/m2 every 21 days called "q21" with high dose calcitriol, on February 3, 2005. The last 4 cycles required Neulasta 24 hours after the chemo.
I had a cough when not using dexamethasone steroids for chemo and a couple of weeks after all the chemotherapy was over I ran a temperature of 104F and was admitted to hospital for 5 days to be treated with IV antibiotics.
Exercise has played an important part in my treatment. Since diagnosis I have lost 50 lbs and trimmed from X-Large to medium. I have walked well over 5,000 kilometres after finding it reduced the more than 120+ per day hot flashes to just a few. I weight lift and swim at a local YMCA, which has been very supportive. The weight lifting, over 4 million lbs since starting, stopped lower back pain and swimming has helped with weight control. I have had severe pain when weight lifting and stopped for a few weeks to give my body a chance to heal. For mild lower back pain I sometimes found increasing weight and less reps more helpful than reducing weight or stopping.
I still don't have a family doctor as few good ones want to take on what they term "complicated" patients. I have used a convenient walk-in clinic.
I am still on triple blockade hormone therapy ADT3, Eligard 45mg/6 months, 3x250mg Flutamide per day, 1mg Avodart (double the standard dose)+ 210mL grapefruit juice + 5mg Proscar each day, and Fosamax 70 mg weekly. This followed 5 months of combined blockade ADT2 Eligard and Flutamide. The grapefruit juice was added to increase the effectiveness of Avodart as I noticed my undetectable PSA had a rising trend doubling every 12 months. Grapefruit juice blocks a liver pathway and causes the effects of several medications to be increased. The hormone blockade has been continuous through surgery and chemotherapy.
I have very low HDL and so take Crestor 10mg medication as I have coronary artery disease and don't need it to get any worse. I still have low white blood counts - mild or moderate Neutropenia - from time to time and otherwise am in excellent health aside from Reynaud's phenomenon, headaches, earaches, anemia, fatigue, and other problems associated with hormone treatment.
I am hoping my current undetectable PSA continues for a long time. I feel I have been guided by God on my journey and hope that continues too.
Right now I am on Eligard 45mg/6-month, Flutamide 3x250mg/daily, and AR5 inhibitors continuous treatment. My PSA is < 0.003 so everything looks fine from that point-of-view. The only problem is that I think the hormone blockade is failing.
During summer I had been running 5km (3 miles) to improve coronary artery situation and my DHT level might have made that possible. My DHT level 6 months ago was 483 pmol/L (14 ng/dL) and 3 months ago was 430 pmol/L so has not been as suppressed as it has been eg. 76 pmol/L despite 2x0.5mcg Avodarts with 250 ml grapefruit juice and 5mg Proscar with 200 ml grapefruit juice.
I've been debating whether to start 100mg Ketoconazole to see if the DHT comes down to something more reasonable - but my Canadian oncologist has advised against doing this. However, I would like to try it to see if it would make a difference - adrenal gland sufficiency might be a concern and the drug is potent. Due to global warming or treatment with Crestor 40mg and Zometa IV without any calcium supplementation at all, my Raynaud's phenomenon hasn't bothered me since last winter. My current WBC is 2.6 otherwise blood work looks good.
I added 100mg Ketoconazole in mid November and stopped using grapefruit juice. The first week was difficult with dizziness but after that things settled down again. The DHT reading Dec 6 was 538 pmol/L or about 16. I am trying 200mg Ketoconazole to inhibit CYP3A4 liver pathway but if that does not help I'll go back to using grapefruit juice.
I have a feeling that the Proscar 5mg may be doing much more for me than the 2x0.5mg Avodart.
Currently using ADT3 drugs + 200mg Ketoconazole and 1,000mg Vitamin C to inhibit CYP3A4 liver pathway with 2x0.5mg Avodart taken 30 minutes after. Effect of Keto has been to reduce DHT by about 200 pmol/L. Testosterone currently 3 ng/dL. Canadian testosterone results - consistently more than 40 ng/dL higher - must either be time of day or include more. Keto did have an effect on Lipids - I suspect it improves effect of Crestor 40mg taken 9 hours later since LDL-cholesterol much lower, unfortunately HDL lower too.
Started 90mcg Vitamin K2(MK-7) soft gels three months ago to help in ongoing attempt to reverse severe coronary artery calcification. Evidence of effect in "Rotterdam" studies. Current coronary artery status was same as last year, a huge improvement. Continuing to take no calcium supplements at all - I suspect this caused most of the problem for me.
Starting vegan diet in June 2008 to hopefully produce reversal of calcification.
WBC still low (e.g. 2.5) but "stable." Other ADT3 side effects helped by exercise program. Zometa IV has controlled almost all lower back pain and pain from hips - it would be horrible without it.
PSA still undetectable on ADT3 ( androgen deprivation therapy with 3 drugs - luteinizing hormone-releasing hormone (LHRH) injection, an anti-androgen which blocks the androgen receptors, and an AR5 inhibitor (proscar 5mg and two avodarts 0.5mgx2). Ribs still hurt, more so on right side but also on left side. Not sure of cause.
Snow has almost gone. Hemoglobin 116, WBC 3.1, Testosterone = 0.4 nmol/L (less than 25 in US units), vitamin D 25-hydroxy = 216 nmol/L, Total Cholesterol 1.96 nmol/L - I managed to get HDL up a little bit, mine has always been very low.
Since Jan 12, 2004:
walked 6,900 miles; swam 300 miles; weight lifted 9.6 million lbs.
PSA still undetectable on ADT3. Go regularly to chiropractor every month and it has helped. Adjustments are mostly to lower back, left foot, and C7. Worst time for pain seems to be last two weeks of Zometa cycle. Had painful reaction to flu or pneumonia vaccination, don't know which one.
Hemoglobin 116, WBC 2.7, Testosterone < 0.3 nmol/L (less than 12 in US units).
Since Jan 12, 2004: walked 7,650 miles; swam 350 miles; weight lifted 10.3 million lbs.
Tomorrow is my sixth (6th) anniversary of starting treatment for prostate cancer.
PSA was 86.8 six years ago and is undetectable now. I sure hope it stays that way for a very long time because I would hate to give my 85 year-old Dad any bragging rights.
I am pleased to be able to say the recent 45 degree x-ray of ribs which showed a few small lesions is unchanged from a year ago. Recently I have had trouble with both knees especially in the middle of night - causing severe pain requiring pain killers. I've tried icing legs from knees to ankles and sleeping with elevated knees. Family doctor says it is a sprained ligament and that knee x-ray normal - no arthritis - and will get better in a couple of weeks - its been 2 weeks already so I hope he's right.
It affects doing my 10km walks (so I've been doing them on the flat - mall walking) and swimming (it was slow, now it's slower) but nights are the worst - horizontal in bed - and have been so bad I could injure myself on the way to bathroom.
Gordon's PSA is still undetectable and although he does have some side effects he's still with us.
Just about over a 10-week headache (and have started a prevention medication), a couple of episodes of gross hematuria (I can still count past experiences on one-hand), some infections, and a freak occurrence of sickening double-vision kind of crowned the lot. A couple of focal lesions showed up in a bone scan of my right ribs, the 11th and 8th ribs. PSA undetectable.
I am happy to say my Canadian oncologist has continued my treatment, we got along wonderfully. My PSA is still undetectable but I do have to have a CT scan for the hematuria as it is not something I usually have.
Case study in the Korean Journal of Urology (Dong Kil Lee et al., 2010) that present the case of a 52 year-old at diagnosis with initial PSA 21.6 who succumbs with undetectable PSA 0.02 nine years later. While I hope not to be in this group of patients, I would hesitate to hang my hat on undetectable PSA. J La State Med Soc (O Sator, 2008) details two patients treated with ADT and chemotherapy relapsing despite undetectable PSA.
Unfortunately the headache never did go away and has required continuous pain management unless I want to be reminded of what it feels like.
Otherwise I am very happy with my prostate cancer treatment.
I really felt like I paid for surviving prostate cancer with this unsolvable headache or pain, every single day, being more acute at night, for over 2 1/2 years until I was given iron infusions for anemia - before hip replacement surgery. I was iron deficient but my hemoglobin after being up a little dropped again. More iron is to be given and only time will tell if this is the answer to my headaches. Hematuria is still a problem.
Since my last update, I still have chronic daily head pain which has lasted for 3 1/2 years and use Toradol and pantoprazole (to protect stomach) as a preventative daily.
I have new focal lesions on L4 and T7 of spine according to bone scan and these are being investigated. Bone density was stable due to Zometa.
With ADT injuries take longer to heal and there is a trade-off between cardio and weight training (to avoid sarcopenia). I have renewed my resistance exercise program and increased weights slightly as I couldn't swim without non-cardiac chest pain. It has taken 4 months and I am back to doing 50% of my swimming.
My right hip was replaced a year ago. The IT band was still a very painful at the one year (11 months) appointment but is feeling much better with rolling (foam roll on floor). I had used a rolling-pin for leg muscles due to severe pain.
Since my last update, my chronic daily head pain which lasted for 4 years has been controlled by use Toradol and Dexilant (to protect stomach) daily as a preventative.
I stopped Zometa last year as I was told that after several years it stops helping.
My left hip was replaced this year and is getting better. Pain was a problem during and after the surgery for a couple of months but is better now.
I had a few kidney stones. The left ones were removed by surgery a year ago because they were large and the right ones were smash by lithotripsy (ultrasound shock waves) recently.
Gordon's e-mail address is: firstname.lastname@example.org