My journey started in September of 2006 with a PSA of 6.0. I figured it was probably just a fluke or BPH (Benign Prostate Hyperplasia). I was tested again in December of 2006 with a PSA of 9.6. So something had to be done.
Went to a urologist. Got the old DRE (Digital Rectal Examination), Ultrasound and Biopsy. All positive for Prostate cancer. Gleason was 9 with all cores positive.
Had bone scan. Positive for metastases. Now just a minute here.... I am a normal healthy adult male and I may (90% probability) die in a few years? Not the kind of news I needed to hear.
Started Casodex 150 mg and Eligard with Zometa for the bone mets. Have had two treatments of radiation for bone mets. My life has changed dramatically.
Deb (my wife) was not too happy. She kind of likes to have me around.
Will update when I get a chance.
Beginning of summer. Since my last update I have had a UroDynamic test where they put tubes up your penis and your butt and inject water to see how much urine you can hold. Then they want you to try to pee. I don't like things stuck up my penis and my butt. I got a bit weak in the knees but got through it OK. Monday I have a Cystoscope to look at my bladder. I don't have to tell you where they put the tube. But what the heck. All for a goood cause.
My PSA rose a bit to .38 from .01 which has me a little concerned. My Docs say not to worry. Otherwise things have been good. I am eating more vegies and fruits and no red meat or dairy. Still on Casodex and Eligard. Last bone scan was negative which is real good news as the first one lit up like a Christmas Tree. So life goes on.
Been an interesting few weeks. My PSA is climbing to 1.2 on June 7, 2008. Started with a new Doctor. I think Dr C will work out very well. I have also started on Avodart to add triple hormone blockage to my regime. We will have to see what happens to my numbers.
Dr. C also tested for CEA, PAP, and other blood markers which could indicate a androgen independent PCa. However, my numbers are all in the normal range. The increase may be due to the Casodex I am taking 150 mg before. We cut that to 50 mg. Again I have an appointment on July 7, 2008 so we will have to see what my PSA ends up as.
I have been on a low fat diet for about 6 months now with no dairy, red meat (and very little if any animal products). I used to eat a lot of red meat and dairy. So far I don't even miss it. Taking a lot of supplements also along the lines of Ron Hard who has a site here. He thinks I may be cured but with my increasing PSA I kind of doubt it. Anyway I have to go eat my supper of rice and beans.
Best of luck and wishes to all of us. Steve B.
July 11, 2008 In the continuing efforts to drop my PSA here we go again. I had my appointment with my oncologist on Monday. My PSA went up again to 1.5 but at a lower rate. So we discontinued Casodex. Hopefully that will get this darned disease under control. Forget about watchful waiting for this old viking warrior, this is all out war against the PCa that made the mistake of entering my body.
So we will see in early August what happens to my PSA.
Remember we are not alone.
Best to all of you.
This Disease sucks. Oh Oh here goes Steve on one of his rants again... Yep you are right there. I am still waiting for my next doctor's appointment next week. Then I get my PSA checked. But my patience is running thin. It seems like the Sword of Damocles is hanging over my head. Will it go up, will it go down, perhaps it will stay the same.... The not knowing (especially at my stage) I can usually deal with. But then and again I have this Sword or Androgen Independence hanging over my head. I perhaps am too knowledgeable, I have seen what happens when this disease gets out of control. All off the hormone train, Jump on the Chemo bus and live for what another 2 months? I just don't like the odds.
When I first got this disease I started to look into the survival rates of my aggressive cancer. ADT would work for 18 months. Then second line ADT, then CHEMO and 2 months. Then good drugs and everyone comes to say good bye. Do not like that path. It is not one I want to follow.
So, Monday I have my Dr appointment and in a few days I get my PSA back and then we see how long of a reprive I have.
Sorry about the rant.... I hate this stupid disease.
Hi all; Well I am done with my rant. I don't know if it helped or not but it was fun.
Got my PSA today, that blamed Sword of Damocles hanging over all of our heads. Mine went up again to 1.8. Now one could argue that 1.8 is a low PSA. However I am on Lupron and Avodart, DC Casodex. It should be at 0.05 or so.
So.... What next? I don't like my choices and I am running out of them. Starting to look more like either the foot rot medicine or some kind of toxic witches brew. Neither are very good for you (have some bad side effects.
I had my Zometa infusion from my new Doc. Much better experience than at the Urologist (who I fired). By the way Zometa is not much fun either, but it works to keep the bony mets in control.
Anyway that is enough bad news for now.
Best wishes to all.
Deb and Steve from NJ.
Later: Well the waiting goes on. PSA went up again to 1.8 and I have another one on September 2008. We will see where that ends up. Getting real tired of this stupid disease. I have a 3 month doubling time so the prediction on my PSA is about 2.1 next month. Even though I say no Chemo now and if at the time I am out of options I am not sure what I would do.
Did I say I hated this stupid disease? Well I do. I miss Frank Zappa, and Dan Fogelberg and Johnny Ramone and all of the people I have lost online. This disease sucks. I will survive this. I will be able to walk my grand daughters down the aisle in 20 years or so. But my god I hate the waiting for those PSA results.
Some have mentioned that I am perhaps too fixated on my PSA. Well, to be honest with you it is hard not to be. I have read the blogs and the stories and the journals. I know what is happening to me. Stupid disease is starting to figure out how to live without androgens. By the way I also hate my stupid meds. I should perhaps use stronger language here. I am tired of the hot flashes, having my boobs grow, losing all of the hair on my legs and arms. And I am tired of having my wife cry every time I have a pain somewhere or express a concern. That is perhaps the hardest part of this. Having to see her upset by all of this. She is a dear sweet woman and deserves better than this fate.
By the way ADT makes you lose your interest in Sex. Not just ED but Not There (NT?). After about 18 months on this stupid med I want out. Give me back my Testosterone, I will deal with this PCa (stupid disease) my own way. I am not sure which is worse, the PCa or the treatment (there is no cure at this stage). I think the treatment is worse.
Well, I am done with my monthly fulminating diatribe, for now. Until next month when my PSA hits 2.2 or 2.3... I just had an idea. I should start a pool, yes, that's it a PSA pool. You all could guess my PSA and the closest one wins. The prize, perhaps a Lance Armstrong t-shirt from the Live Strong foundation.
Stay healthy and well and may all of our PSAs be unmeasurable.
P.S. Did I say I hated this stupid disease? That's the other thing about ADT, it turns your mind to mush.
Well it went up again. 2.9 PSA this time and also my other cancer markers are starting to rise like CEA, LHA, etc. Not the kind of news I wanted to see.
I started on Nilutamide which is another AA. We will see if that will tame this tiger.
Best wishes to all.
This disease sucks big time.
I am officially off of conventional therapy. My last PSA was at 6.0. I have been on ADT for the last 18 months since diagnosis. But with a rising PSA on ADT3 I see no reason to continue something that does not work. My oncologist was somewhat concerned, but will work with me to do blood work.
My only other option at this point from the conventional docs is chemotherapy, which I refused. So we will see what happens. Keep tuned in to see what happens.
Stay well and keep your PSA low.
I got to two years after diagnosis and I am still alive. The 50% time to death for my cancer is 2 years so I have beat the odds for a while.
We have to celebrate what we can.
Hi all; I finally found something to stop my PSA rise.
I failed ADT and my PSA was up to 17. I started on Prostasol on January 2009 and in two weeks my PSA dropped to 3.6. It has stayed at about 3 for the past few months. So that is good. I may have bought myself a bit of time to continue my research into prostate cancer.
Now Terry will tell me that Prostasol will cause blood clots. [Well, nothing is definite in the PCa game, so I wouldn't say that Prostasol WILL cause blood clots, but I will say it MIGHT, because there is evidence to show this.] I take some precautions to stop that from happening. I use some natural blood thinners and exercise and low dose aspirin. Cancer will put out clotting factors also so all of us have to be carefull about blood clots. Interestingly although my oncologist could not suggest Prostasol [he could loose his license if he did], he did say that he has a number of men on Prostasol who are doing well. So I have continued my relationship with him. I need someone to watch over me and make sure I don't do anything harmful.
I still hate this stupid disease and I plan to beat it one way or another. At 58 it is way too early to make out a bucket list just yet. If I find a cure for this I will let you all know.
Best of health to all of you.
Keep your PSA low and your pole elevated.
Hi Guys; Well the good news is I am still alive. The bad news is that Prostasol failed me. Not sure if it was my cancer finding a way around it of quality problems with Prostasol. But I had a PSA of 165, bleeding when I pissed and a lot worse bone pain.
About November 2008 I started Taxotere every three weeks at 75mg/m2. I have had three cycles so far. It is not too terribly bad. I also have the LHRH shots every month. I have not had a PSA check yet. But we will see.
I also had the green laser procedure TURP to open up the tubes a bit. My urethra was very closed and I had a lot of trouble taking a piss.
I hate this fucking disease. It really sucks. I also lost Chris in December who was a buddy of mine and I really miss him.
This year I have lost 3 men that I know well to this disease and all were good men.
But I will continue my research. I hope I find a cure soon. Days are getting shorter.
Good luck to all.
Timothy Hotujec mailed me to say:
I don't know if you are aware that fellow YANA member, Steve Berg, passed away on August 30th 2010 at 2:21 am. I truly will miss him. I was lucky enough to visit him in the hospital the day before and say my good bye to him. He and I chatted many, many times late at night on FB when both of us would be up due to pain we were having. He was a fighter of this disease right up until the end. Now, he has no pain to endure.