THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.
[Barry's story is a little different because he had not actually been given the diagnosis of Prostate Cancer when he joined YANA in 2000. It is worth reading his story, because it does show one of the outcomes if high PSAs do not lead to automatic surgical intervention.]
Age at entry 64. Date of Initial PSA test Oct 2000 Initial PSA = 7.3. Initial Gleason = Not known - no biopsy. Treatment decided = watchful waiting.
I don't fill the category yet of having PC, but have a high PSA reading which has been creeping up since Oct 2000 from an initial reading of 4.3, when it was first taken. I am of the opinion that, seeing that I don't have any problems with my system, I wait and see.
I am not really that impressed with even a biopsy being taken as that is not conclusive and will irritate the prostate and open it up as well. In my mind that is not the way to go. It could, in my opinion, be a backward step to make.
Instead I have, since March 2001, undertaken a series of supplements which I take regularly every day. I am, you might say, taking a punt. Having read many books on the subject, and in the last 2 weeks, pursued the Internet over a variety of sites, I am of the opinion that my course of action is, at least in the short term, the best one.
It is reassuring that in June 2001 my PSA dropped to 6.3, the test being done by the same pathology firm. This I think is most important.If this continues then I will be satisfied. If not, then I may have to look at other options. But at this stage I will not consider a biopsy or any other form of invasive surgery.
Maybe my case is one that should be included in the list just to see what happens down the track. I have not read of other peoples' experiences in your website yet but will do so over the next few days. If you are interested, I will keep you posted.
Since last in contact, I have had 2 further PSA's. In November 2001 it was 6.4 and in early March 2002 it had risen to 8.1. Not so re-assuring. I have decided to add to my supplements and increase others I have been taking. Another installment should follow in 3-4 months. All the best to the Yananow site.
Current Age = 65. Current PSA = 5.6. Current Treatment = watchful waiting. Initial treatment? = no treatment except natural medicine.
Owing to taking natural medicines my PSA has dropped from 8.1 to 5.6 and I hope will continue to drop over the next 3 months. I have not changed my bad habits, still smoking 30-35 cigs a day and drinking maybe 4 to 6 stubbies of beer at night. The only thing that has changed is I purchased a jug to purify the water I drink. Will update in 3 months.
Barry is now 67 years of age and his current PSA is 5.6 ng/ml. He has still not had any diagnosis or formal treatment.
It is now early January 2004 and I am still having blood tests every 3 months. My PSA is not moving but is controlled with the medicines I am taking. I don't expect this to change this year but will keep Yana informed if there are any changes.
It is now August 2004 and went to the Doctor for a PSA test. This time it is still going down and now is nearly normal 4.7 ng/ml (initially from 8.1 in 2002)
I was tested in January 2005. My PSA reading 4.5 was 4.5 ng/ml, down a little on my August reading. I am taking Saw Palmetto (3200 gm), Grape Seed (Helen Hemmes only12,000 gm), Selenium 400 mcg.
Blood test 14 October 2005 showed PSA at 5.4 ng/ml; July it was 4.9 ng/ml. Taking Saw Palmetto only 3200 mg/day. Another test is due late February and will inform the results.
It is now January 2007 and I find things are very static. I have gone up slightly in my PSA; (5.9) and am taking Epilobeum and Selenium as a prevention. Also have come across a product that has reduced my glucose from 8.3 to 6. I have never taken diabetic pills. It is called Sucro Balance and is produced by Natures Own.
Barry is now 70 years old and says:
It is now June 2007 and have not had any medicines since February 2007. My PSA is currently 5.7 ng/ml and I notice on the pathology report that they have increased the "normal " rate to 6 and under. A large change to 2000 where I think everyone who was over 2.0 ng/mlwas worried.
My update is that in the last little while since updating my journal is that I am no longer on any medication and test my PSA every 6 months. It is stationary at 5.0 and has not changed in the last year or so.
It is now 16th December 2009 and have just got my results back.
Please note that this is a new pathology firm and I have had differences before when changing. My reading is 15.3 ng/ml which is a significant increase from the last one.
Next time, which will be in March 2010, I will go to my previous pathologist to compare.
I have not posted since December 2009 so its time for an update.
In May 2010 I had a PSA test which returned 24.0 ng/ml (which I took in Melbourne where all the other tests were done except for the December one as I wanted to make sure it was not a one off by another Pathologist). A larger rise since the last one and obviously genuine. Started on Selenium and Gymnema.
In July I had another PSA which returned 45.0 ng/ml. Looks like its finally taking hold. My Oncologist rang me and said "You have prostate cancer and you will have to have a biopsy". Just like that. I said "I will make an appointment when I get the time but no biopsy." [I agree with the oncologist about the biopsy.] I immediately increased my dosage of Selenium (600mcg), Gymnema (600mg), and Vitamin D3 (8000iu) daily.
To allow these to take affect I booked in for a blood test on the 20th August and the doctor a week after on 28th August. Will keep you posted of the results and my decision on what action I will take.
Many thanks to Terry Herbert for making it all possible to evaluate and read of other's experiences and thus help in reaching a decision which would otherwise not be so easy.
Today is 31st August and I wish to correct something I said before. Silly me I included my sugar supplememts in my summary which had nothing to do with my prostate ( only the fact that it rose at the same time as my PSA). Also my docor is a Urologist not an Oncologist. Sorry about that.
To continue, I had the PSA test and it only rose a little to 51 but what did show up was an increase in my ALP (Alkaline Phosphate) from 94 (acceptable is 40-130) to 163. This indicates a possible bone mets problem so am having a complete bone scan on 2nd Sept to determine the situation. My doctor has agreed not to do a biopsy (surprise) but to re-evaluate the position after another PSA (28th Sept) and results of the scan.
Will post results as soon as I know.
Later: Had the bone scan 2nd September (the results are listed below) and a further PSA on the 20th September which showed an increase to 64.92 ng/ml. I saw my Oncologist on the 26th September and he concurs that there is no doubt I have an aggressive cancer. My first DRE (Digital Rectal Examination) in May he classified as T2B and my second in late August was considered T3B.
As I have to travel in October and go overseas to Bali in November I have arranged to start my months pill of Casodex (50mg 1 daily) early December and then have an injection of Eligard early January which is good for 4 months.
Bone Scan: Multifocal osteoblastic bone metastases are present, involving the left temporal/ occipital region, left second posterior rib, left third posterior rib and left scapula. Within the thoracic and lumbar spine, multifocal metastases are present, most prominently within the vertebral bodies of L1,T12,left pedicle, activity in the lumbar spine, both sides of the pelvis in the iliac bones and a large area in the lower ribs also in keeping with metastases. Conclusion: Appearances are those of multifocal osteoblastic mets most in keeping prostae cancer mets.
Will keep you posted. Good luck everyone especially Terry.
It is now 9 March 2011 and my results are back after three months on Eligard.
Very good news for my PSA level which has dropped to 0.29 from 116.0. My ALP is still 383 (from about 600) and that could improve in three months time as the effects of the treatment are still on-going. I will stop taking Eligard for the time being and monitor my PSA over the coming months.
The worst side-effects from this are: hot flushes which occur every 30-40 minutes; memory loss which has shown up in the 3rd month - very annoying; fatigue and loss of nearly all muscle matter especially the legs. Will update in 3 months.
In July 2011 (after having a needle for Eligard in Dec 2010) I started, in a moderate way, to get niggly pain from the hip and lumbar area. I persevered until late September 2011 when I had a PSA test (21.9) and then a further needle on Oct 4th. Now this being December 8th, 2011 my PSA has come down again to 0.29. From this I will, in future, have a repeat needle every 5 months until they have no effect.
The fatigue is, if anything, worse than before, my memory has detiorated and the hot flushes are more frequent. I had a second opinion while in Melbourne but it seems my Urologist is on the right track and not much else can be done.
One thing that is of concern is my ALT (which is a liver test) has not reduced but gone up to 584 (normal 30-130). This is an indication of the bone reaction to Eligard. Last time it came down to below 130. However we will see.
Good luck to all and Merry Xmas.
Update 3rd April 2012. The Eligard lasted for nearly 6 months this time and had another on 29thFeb as pain had started to show itself again. It turned out to be from another source and not bone mets at all so I have taken it too early (PSA 8.2). On the night after the needle my Urethra tube blocked up somewhat and it is very difficult to pass urine. I am in the process of having that looked at, and of course want to avoid a TURP at all costs.
Will post again when I know. Barry
As far as I can. Over the next 3 months PSA continued to rise to 49 so discontinued ADT. Chemo & radiation were offered but after close examination were not taken up. In November 2012 constipation started and has continued to this date (caused by the pain killers I am taking). I am in a Palliative care hospital to try and correct this situation (6 days now). I am down to 62kg from 85, decreased appetite & shortness of breath. The treatment I am on now has improved my condition and will post again in the near future.
Barry's e-mail address is: barry22446688 AT yahoo.com (replace "AT" with "@")
NOTE: Barry has not updated his story for more than 15 months, so you may not receive any response from him.