I'm new here. I complained to my primary care physician about extreme difficulty in urination. Hr referred me to the urologist mid-June of this year. I had a biopsy - the results were cancer all through the prostate. Bone scan confirmed it had spread to the bones, so I started lupron August 11. I'd had a catheter inserted into my bladder in mid June and only got rid of it after a TURP operation 2 weeks ago - 160 days with the catheter.
My PSA history: 2005- 0.50, 2007 - 0.60, 2008 - 0.52, 2009 - 0.67, 2010 - 1.04, 2012 - 1.44. Then they stopped taking it since I'd hit 70 years old and my next test was this past June - 19.29. A grad school classmate was diagnosed with prostate cancer 10 years ago - his PSA history was almost identical to mine except instead of stopping testing, they dug deeper and found the cancer while it was still small. He's been basically cancer-free since then. Moral: don't let them stop checking the PSA level.
Since starting lupron in August, my PSA has been: Aug. 14 - 26.67, Sep. 1 - 20.79, Sep. 22 - 20.94, Nov. 20 - 37.09, Dec. 5 - 46.05.
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Stegosaurus37
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I'm glad you were vigilant with your doc. Continue too learn all you can. You found the right place to learn more and have various answers to questions asked. My sincere best wishes.
I'm not a doctor, but I did have a few thoughts come to mind.
Seeing a trending increase of PSA so shortly after starting initial therapy with Lupron is the kind of thing you need to talk to your Medical Oncologist about. Ideally, you might look for an Oncologist who specializes in Genito-Urinary (GU) cancers, and Prostate Cancer, in particular.
Is your Testosterone level actually being lowered enough by your treatment? (<20? <50?) The only way to know is to have it tested, along with your PSA.
Many men get rapid, consistent lowering of the PSA after starting Lupron, and continue that trend for many months until reaching a PSA nadir (lowest point). The consecutive rises and those number values would concern me.
If Lupron isn't cutting it, ask about other drugs that might be tried.
Since you have bone mets, keeping track of what's happening to your Alkaline Phosphatase (ALP) level might be informative, too. With bone mets, asking about the feasibility of taking a bone protective agent such as Zometa or Xgeva would be another thing to discuss with your Oncologist.
If you provide more information about the general area where you live, folks here may be able to suggest nearby centers of excellence for prostate cancer treatment, or links to other resources, such as face-to-face prostate cancer support groups.
Meanwhile, continue to report ALL your symptoms to your doctors. If your overall symptoms or test results or scan results continue to worsen, start asking earlier rather than later about the possibilities for more specialized genetic testing of biopsy samples or of your inherited genes. If you may have such things, it could be good in pointing toward a more effective treatment or clinical trial someday, and to provide information to your blood relatives. If you test negative for most things, that could be reassuring, too, as you may continue with more Standard of Care type Options.
(I certainly agree with you about the PSA testing. My doctors stopped giving me PSA tests in my mid-50s, and it was a huge shock when I developed lots of pain at age at age 65 in Nov 2013, and was first diagnosed as very metastatic to bones and lymph nodes with a PSA of 5,006, and a NM Bone Scan that lighted up like a Christmas Tree. Far, far beyond hope for a quick and easy cure.)
The testosterone level is as close to zero as you can get. My cancer is androgen-resistant - the tumor is making it's own food. Well, wouldn't that just figure. No way I'd get anything simple!
I have no family history of prostate cancer but I did have Agent Orange exposure so I'm blaming that. The Veterans' Administration agrees with me and has given me 100% disability.
I live in Corvallis, Oregon and go up to Salem (45 minute drive) for health care at Kaiser Permanente. There is a regional health center here in Corvallis (Good Samaritan) but their support groups are mostly breast cancer. Between a loving wife, family and friends and now that I've discovered this group, I'll do OK. I have a basically optimistic nature.
The worst part was a catheter in my bladder for 160 days until a TURP 3 weeks ago freed me from that. The catheter was physically debilitating until my body adjusted to it - which took several weeks. Kind of wrecked the summer.
I have no pain and my vitality is almost all back. I start chemo (taxotere) this Tuesday - we'll see how that affects me.
THANK YOU for your information and support - more after chemo starts.
I am a high grade Advanced PCa survivor. What I can recommend is what I am currently doing as huge part of my treatment plan. I suggest simple hand swinging exercise that I currently do at least 3x1/2 hour sessions, Google hand swinging exercise cure Stage 3 colon cancer.
No drugs no trying to buy yourself out of trouble. Just supplement it with your treatment and if it works slagged of the drugs. Work slowly in 10 minutes session, the important thing is to be able to process to 30 minutes, The last 10 minute of the 30 minute exercise is crucial to remedy some ailments.
I am a many-decades gym rat and work out 3 times a week normally (currently on a short break recovering from TURP/chemo port implant surgery. But back pumping iron a week from tomorrow. It's given my a very strong body for my age (75) and I regard that as a great asset in this journey Just about any exercise is better than none - the important thing is not how much you are doing but that you are continuing to do it.
If that's working for you - good on you! Keep it up1
I like your comment. The important thing about this regime (hand exercise) or it could be any other for that matter is it is simple but boring. You must try to get the blood circulating as it had tremendous healing abilities. I for instance would not be looking like a healthy person at all. Remember I am wedged down by Advanced PCa Stage 4 which is often terminal and painful at this stage.
.... cont of this forum I didn't have clue what was going to happen to me because I have embarked on to an unknown journey. I was looking to survive 2 months. I hope I get to your age after the 2 month.
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