PSA up from .04 to .10...

[cfrees1]

Had blood work done on Wednesday and my test results were posted today. I think this is pretty bad news but would be interested in the opinions of the men here. My appt with my uro is on Wednesday so I have some time to deal with this. What do you guys think? Is that too big of a jump to be a test aberration? I'm on Lupron, have been for a year. Am I now at the dreaded crpca stage? What should I expect next? Is it still about a three year life expectancy? I'm kind of freaking out.

[Jvaughan0]

You feel you are going to die. It is a scary moment on a stressful journey. But I know something... you are not going to die tonight or tomorrow or even by next Wednesday from cancer. There are many treatment options that can extend your life for years. Death will come to us all, but don't die a thousand little deaths in fear of this condition. Look for peace in the moment and see every day of life as a gift.

[DFZ4835 in reply to Jvaughan0]

Doom and gloom will kill you as fast as your PCa. Live your everyday life just as you used to before PCa. We will all die someday and cancer is just 1 of hundreds of ways to go. You will die when God calls and until then have as much living as possible.

Dennis

[gusgold]

The Mayo Clinic told me "if you live long enough you will die from PCa"...Nalakrats is 72 and wanted to be fishing at 100...but in Nal's case while fishing in Florida a 20 foot gator ripped a hole in the bottom of his rowboat, and now Nal is sleeping with the fish. So, no one knows how long they will live but with a PSA of .1 my guess is you got another 20 years..just don't go fishing in a row boat in gator infested waters.

[Pennysue1 in reply to gusgold]

Is this for real - could not find anything on the internet about Nalakrats

[YostConner]

This kind of change does suggest disease activity, but it would not make my own oncologist twitchy. He usually wants to see two consecutive rising numbers before reacting. Life expectancy is difficult to determine, but my money is on more than three years. I'm ten years past diagnosis and nearly three years past crpc. I'm still making plans for the future! Good luck with you appointment.

[motosue in reply to YostConner]

I should know the answer to my question by now but what does crpc mean?

And you're 10 years out!!!!! Wow. I hope I can have that too. What is your thinking about what you are doing to have 10 longs years under your belt. Congratulations, YostConner.

Wilfred Motosue

[YostConner in reply to motosue]

CRPC = castrate resistant prostate cancer, the point at which Lupron or Zolodex stops controlling the beast.

I have a very good relationship with my oncologist. I've learned to trust him when he says it's not yet time to move to another treatment. That's especially hard right now since my PSA is on a steady climb despite Zytiga.

The other thing I've learned to do is to live life with cancer rather than allowing it to control me. Believe me, I get tired, and I know I'm weaker, but at age 53, I'm not yet ready to yield. My husband and I love to on family activities and to travel. In fact, I'm writing this from Paradise Bay, Antarctica. The week after we get back, I'm having surgery to implant an artificial urinary sphincter. I wish I could have had that done before the trip, but it just didn't work out, and there was no way I was going to miss this, so I coped. Good luck!

[Lakefisher in reply to YostConner]

I'm thinking about getting a sphincter too. I assume you had a prostectomy. After 1 1/2 years I'm still leaking a lot. Would like to hear how it went and if it's working for you.

Wow Antarctica! What a vacation. Good thing you got to see it before it melts.

[Gecrellin]

I was diagnosed 4 years ago with a PSA of 840. The lowest it has gone was 73. In December it was almost 5000, but current treatment has brought in down to 3000. Through it all, including 22 cycles of chemo, I have continued to feel well. Relax and enjoy life!

[CBurnett in reply to Gecrellin]

When your PSA was that high did you have bone mets?

[Gecrellin in reply to CBurnett]

I've had both lymph and bone mets from the beginning.

[Hidden]

PSA under .1 is generally pretty good.

[Scruffybut1]

Since Sept '16 my PSA dropped from 26 post chemo to 0.06 with Zytiga. (Had 10cycles Docetaxel, maintain Zoladex and then post chemo 5 months with only Zola.) Next bloods on 13 Feb. I have been told by Onco that at some stage will plateau then start to rise but if or when it reaches 5.0 they will look again at my treatment. So don't worry about your rise. I started @ 200 and cannot worry. David

[Pennysue1]

My husband has been on lupron off & on since 2012 - my advice is never quit taking the shots - he's doing the Provenge Immunetherapy now - you have to be your own health advocate. Mike did zytiga for 4 months - did not work for him - doesn't mean it won't work for you - he did quit taking the Lupron shots for 18 months - prostate cancer came back in his lymph nodes - so our advice would be never quit doing the Lupron - it helps protect you - plus whatever other treatment you may be doing - Mike's PSA has been as high as 15 so I think you're way ahead of everyone- you're ok - there are a lot of different treatments out there for prostate cancer

[motosue in reply to Pennysue1]

Yes, I've been on Lupron since Oct. 2010 when I was diagnosed. Still on it. The other wise thing that you said was "you have to be your own health advocate". I always tell new cancer patients who are trying to figure out what to take and do. Thanks Pennyseu1 for your wisdom.

[Hunt4Fun]

I sort have figured that if have advanced Prostate cancer PSA is going to go up unless on ADT and it is working. I know when 6 month shot wears off my PSA climbs like a rocket. Double time i 2 weeks. Lowest I get is .08 range. End of 6 mouth cycle I'm up to .8 range. If I go 30 days off Lupron I have gotten to 2.00 to 3 range. Doc not letting this happen any more. 42 mg every 6 months...clockwork. After 6 years of all this, my last 2 cycles are showing increased PSA while in cycle. I figure not so good but what you going to do.

I do best I can, I listen to doctors, I get multiple opinions and do lots of research and I try to eat right.

Without question, the diagnosis of incurable advanced prostate cancer sucks, sucks and sucks. But rarely does it mean a rapid death sentence.

I think the toughest part of all this is the mental life style we MUST live and frequently alter. Stress, anxiety, worry, depression etc. is defeatist to our bodies ability to fight and our ability to actually find and enjoy numerous moments of life.

And while we enjoy those moments, we live another day which is one more day towards what may present a cure or a treatment that makes many more days.

I sure hope something here of my experience and thoughts help you some.

Peace Out,

Patrick

[Hidden]

When your psa gets into the 2 or 3 range, some scans can locate hot spots. Any interest in doing that? It might be a lymph node or an bone met in your sternum.

[mccartney_7]

One thing I notice is that you are dealing with a "uro" still. That's ok for a first step but maybe not the person you should be seeing at this point - I think. Surgery first and then lupron is pretty my their limits seems like. Get a referral or find an oncologist with much experience in advanced prostate cancer. Still low PSA at this point, not the time to panic (although I probably would too).

[motosue in reply to mccartney_7]

I totally agree with you. He should be talking to a Oncologist also.

Wilfred

[cfrees1 in reply to mccartney_7]

I have met with a med once once so far. My team determined that I would continue to work with my uro until the next phase was needed. So it might be now or maybe after the next test and increase.

[herb1]

Too early to panic. First, you need at least one more psa, maybe after another 3 mo. Second question: how long since your last Lupron shot and how long was it supposed to be? Remember, the 3mo is really 84 days, and so on. And, what makes you think you're the "average" lupron patient? Maybe the Lupron is less effective for you AS IT WEARS OFF. And, finally, you can never be sure that nurse who gave the shot got it right (shelf life, correct mixing, right muscle, stars in the sky, etc. True scientist style: more data!!!

herb

[cfrees1 in reply to herb1]

I haven't considered those things. I have been on Lupron for a year as of this test. I get shots every three months. My testosterone is low, 4. So the Lupron has been effectively lowering my T. I guess we'll see what my Doc says tomorrow.

[Magnus1964]

Your urologist may put you on one of the many anti-androgen drugs available, i.e., Casodex, Zytiga, xtandi, etc. Don't panic.

[Attitude67]

Dr. William J Catolona, a Professor of Urology at Northwestern University is well known for his PCa research. Dr Catolona completed residencies at both UCSF, and Johns Hopkins while becoming a well known authority on the molecular genetics of PCa cell lines.

His advice to those experiencing Lupron failure in an article for Quest back in 2007 has gathered a great deal of support and appears to be well supported at this time. It may be of interest to you and others in your position so I will repeat it:

"I recommend beginning intermittent hormonal therapy with bicalutamide 50 mg daily for 10 days (1 day before and 9 days after the 3 or 4 month Lupron or Zoladex injection. Then, I recommend measuring the PSA every 3 months. The PSA level usually falls to near zero. I recommend repeating the treatment when PSA rises to 4 ng/ml.

The biomechanics of Casodex (Bicalutamide) in Androgen suppression by Casodex are completely different than Lupron and it is offers the potential to extend life particularly when combined with Prednisone. I recommend you review his explanation and opinions and then discuss them with your treating physician:

drcatalona.com/quest/quest_...

[celler6]

I was in the hospital twice in Dec. '16. I experienced a short window where I was off of Zytiga. In that time my PSA went from undetectable to .3. I was worried as well but conceded and doctors agreed that PSA can be altered by many things. In this case, I had briefly gone off my meds and in the space of 6 weeks it was back to undetectable.

As far as becoming CRMPCa, this is not indicative of it. I am CPMPCa. In my case I had radiation, two times I had it irradiated with HDR, took Lupron, and had 23 days of XRT. Six months later the PSA was .3, two weeks later it was higher and after 4 testings it showed near 1.0, close to a 5 month doubling cycle. It was clear I had moved into the castrate resistant group as TEST was still too high, about 35. I was switched to Firmagon from Lupron to further drive down TEST. As well, Lupron stopped working which is when I became castrate resistant.

In your case I seriously suggest that you relax. The indication that you are castrate resistant will show in a steady rise of the PSA. Blips like yours are commonplace, which is what I suggest is the case. I have distant mets all in the bones and all over. My treatment regimen of Firmagon plus Zytiga and prednisone have kept everything in check with no metabolic activity. Even with the rise in PSA. There are lots of options, and you don't know yet if Lupron is the culprit, but if it is, you have options like Firmagon. Give it a little time before you panic!

[cfrees1 in reply to celler6]

Thanks. This makes me feel better.

[19don36]

Breathe! Either my urologist or my medical oncologist would chuckle at this. First of all, someone should explain to you or should have by now, unless you have some very unusual form of cancer this change is of no consequence, and PSA is an indicator, not a measurement. It should be of no real consequence and by itself is no cause for concern. Breathe!

[dmt1121]

You may want to read "Surviving Prostate Cancer" by Dr. Patrick Walsh (Johns Hopkins) where he tells of patients becoming alarmed at similar news. He explains that there are a number of oncologists and urologists that wait to see if it stabilizes. Often in the range of 2.0 - 2.4 or so. I am not saying to avoid seeking advice and alternative options, just that the PSA level is not necessarily a reliable guide to having PC or not.

In addition, there can be a great deal of deviation without a trajectory that can be charted, so hang in there. Take a deep breath and enjoy life. You always have the power to resume some sort of therapy. Remember that even the most revered doctor is basing their advice on their experience and a bit of guesswork. I am hopeful you will be fine.

[TestyourPSA]

relax and go to urouigist. DRE and biopsy will tell you everything. I went with IMRT and seeds after diagnosis. Contact me thru my cancer warrior page.

[cfrees1]

So, a follow-up since my appointment today. As most of you surmised, my urologist was not overly concerned. But he did start out by talking about the upcoming options available to me which suggests to me that a rise to 0.1 is significant. He advised that I wait for another three months before doing anything. Let's see if this is a trend or not. At 0.1, it's still low, certainly too low for any scans to detect any cancer. We talked about different scanning options and at what stage those would come into play. Not yet for that. If in three months it goes up to 0.2 or 0.15, we will consider adding Xtandi to the Lupron. Then, another three months before we get the results of that. After the Xtandi stops working, he said then we would pull in a medical oncologist to help advise on potential clinical trials or chemo options, perhaps Provenge. I asked about genetic testing and I learned something interesting. He said that while we are reading about the new mutations being identified for prostate cancer, what is missing right now is the proper mapping to available treatments. He said that we might find that I have 9 genetic defects, but he would not be able to use that information to make any informed treatment suggestions. I thought that was interesting. So there is still that missing piece. I also discussed statins as a treatment to slow down the cancer. That was in a recent article I read. And while he said it wouldn't hurt my current treatment plan, he thought that the current studies which seem to suggest positive outcomes are pretty badly flawed and he wouldn't suggest going on statins just for PCa. Of course, it may have other health benefits but comes with side effects of course. So I'm staying away from that. I have to say I have a lot of confidence in my urologist. Any idea or suggestion or article I read, he could respond to with facts from the study, where it happened and why the information being published in mainstream media wasn't especially accurate. He doesn't sugar coat anything, or give me false hope. He's very matter-of-fact. But he knows his stuff.