PSA level 1000

[Blair77]

So my husband who is 47 was diagnosed with prostate cancer that has spread to lymph and bones. His PSA which was taken in 2013 was 2.8 this week it was 1,044. I'm wondering what the chances are Lupron will be effective?

[gusgold]

Blair,

Lupron almost always works...his Doc's will bring PSA to <.1....but it is not a cure because eventually the cancer gets around castrate testosterone levels caused by ADT

[Dan59]

Blair, I have read stories of Men with psa in the 1,000s and in most cases Lupron drastically reduces psa, but not a cure, as Gus said, just beginning of the battle

Dan

[dave100]

In cases like this with high PSA values, ADT (Lupron,Goserelin, etc) provide relief from symptoms by depriving the cancer of the testosterone growth stimulant and thereby producing a dramatic reduction in PSA which is more or less an analog for that growth. His oncologist will probably give him bicalutamide to prevent increased symptoms caused by the temporary testosterone flare which happens during the first week or so of use. As everyone will advise, the effectiveness of ADT is limited as the cancer evolves coping mechanisms to carry on without testosterone but that period can be several years. We're waging a war here with our own DNA plotting against us.

[AlanMeyer]

I'm not an expert but, as I understand it, different men differ in the hormone sensitivity of their cancers. What we're for hoping here is that your husband's cancer is highly sensitive to changes in hormones. That can be true for men with low PSA values and also for men with high PSA values.

One measure of effectiveness is PSA. The lower it goes on the Lupron, the more sensitive is the cancer and the longer the remission is likely to last. I don't think that a lot of men will go from 1,044 to < 0.1, but some do and, if so, it's a great sign.

I also suggest that your husband talk to his oncologist about getting chemotherapy treatment alongside the Lupron. Recent research indicates that, for men with aggressive cancer, the two together provide significantly longer overall survival than either one separately or one (Lupron) followed by the other (chemo) when the first therapy fails.

It's possible that your husband has a highly aggressive cancer which could benefit from this protocol. We don't know for sure because we don't know how fast the PSA is growing. If it experienced a smooth, steady growth over a 48 month period since January 2013, I calculate that the "PSA doubling time" was 5.62 months, meaning that every 5.62 months, the PSA doubled. That would be aggressive, but not extremely so. But, in the first place, the measurements could be significantly less than 48 months apart, and in the second place, it's likely that the cancer grew a LOT faster in the months closer to 2017 than in the months shortly after the 2013 PSA test. It's possible that the cancer did hardly anything in the first couple of years, and then exploded.

If the person treating your husband is a urologist, it's very possible that he doesn't know a lot about drug treatments. Urologists are specialized surgeons, not drug specialists. They know that the usual thing to do after discovering an inoperable cancer is to inject Lupron. That is indeed a good thing to do, but it's not necessarily the only good thing to do.

There are different places to find good medical oncologists. I always recommend the U.S. National Cancer Institute's list of "designated cancer centers" where leading edge teaching, research and treatment are conducted. See: cancer.gov/research/nci-rol.... Also, if you post a message on this list saying where you live, there may be someone in the group who knows a particularly good med onc in your area.

Best of luck to you both.

Alan

[Blair77 in reply to AlanMeyer]

Thanks Alan for such an informed answer. He will be starting chemotherapy in March as well.

[Hidden in reply to Blair77]

Good luck and best wishes to you both. I know it is a difficult time for you.

[AlanMeyer in reply to Blair77]

I'm glad your husband is getting aggressive treatment. He's young enough that he can probably handle treatments that an old man might have trouble with. It seems to me an excellent idea to hit the cancer hard.I'll add my "Good luck" to that by WSOPeddle.

Alan

[Neal-Snyder in reply to AlanMeyer]

Alan, do we know it's inoperable? We know it's metastasized. I'm just thinking about the recommendations at the PCRI conference to "debulk." Otherwise (& no otherwise if it's inoperable), I thought you provided Blair with an excellent response.

Neal

[Blair77 in reply to Neal-Snyder]

Neal,

Who would we ask about surgery?

[Neal-Snyder in reply to Blair77]

Blair, I changed my mind on that suggestion after I read Alan's response below. Please see my response to him re why I'm slow in responding to you.

Neal

[AlanMeyer in reply to Neal-Snyder]

About "debulking", that's a good question. I have no information about whether that's a good idea or not. However, with a PSA of 1,044, I'm guessing that only a small part of the total bulk of the cancer is in the prostate. Even if debulking is a good idea in other situations, I would wonder if it would help in this one - or just add more treatment and side effects.

Alan

[Blair77 in reply to AlanMeyer]

Yes, I think I will ask his oncologist next time we see her.

[Neal-Snyder in reply to AlanMeyer]

Hi Alan--Yeah, I think you're right. Sorry I didn't answer sooner--we were in Luang Prabang for a few days & I forgot my iPad.--Neal

[Hidden in reply to AlanMeyer]

BUT.. 5.62 is false precision. Doesnt say when in 2013 psa was taken. 6 is less puffed. "first couple of years" after 2013 puts it into 2015/16. yikes. And dt of 6 months is already short. also urologists not= surgeons.

if mets, suggest you consider clinicaltrials.gov/ct2/show...

[cfrees1 in reply to Hidden]

What do you mean by "false precision'? Are you suggesting that PSA tests are not valid to two decimal places? When I get my results back, they are 0.04 etc. via the ultra sensitive test. Maybe different people get different tests?

[Dan59 in reply to cfrees1]

They are also different from the same sample from two different labs, why it is important to use same lab.

Dan

[Hidden in reply to Hidden]

The calcuation depends on two numbers: the change in PSA over time. You do not know the time that well. The post says "taken in 2013".

And then you go on to say that you think that the PSA did not increase when the PSA level was taken "in 2013", but it began increasing much later, decreasing the amount of time that should be used in the calculation.

[AlanMeyer in reply to Hidden]

Absolutely right. The precision I gave is pretty meaningless. I hope I at least conveyed the the sense of that in my posting. My goal was just to give a ballpark average of the doubling time over the whole period. The actual doubling time now could be higher, or, more likely, lower. And of course it will be lower if the elapsed time between the tests is less than 48 months.

Alan

[JamesAtlanta]

So sorry to hear about your husband' PC. I was diagnosed in 2015. Age 53 at the time. Had a 227 PSA and 9 Gleason. My PSA was only 2 a few years before. Metastasized to my spine and ribs. Responded really well to Lupron. PSA became undetectable in 3 months.

I highly recommend Lupron, even though it has a lot of side effects - it has kept me alive. Been able to work full time for 2 years and carry on fairly normally. He should also start chemo now. Recent study shows that early chemo with Lupron will extend life expectancy. And there are a lot of new drugs and research going on, so we should hope that with the treatment options we will extend things until they find a cure.

Trust me, there is a lot to hold out hope for!

You and your husband are in our prayers!

James

[Blair77 in reply to JamesAtlanta]

Thanks James! Yes, he will be starting the chemo/ HT combo in March . He will get his first Lupron shot this Friday. Are you also doing the chemo or just Hormone Therapy?

[JamesAtlanta in reply to Blair77]

I had a hormone shot immediately to stop the cancer. It was compressing my spine. I'm on that indefinitely. I started chemo a few months later. (That was not the protocol when I was first diagnosed, but a study called 'The Stampede Study' came out about that time and recommended that chemo be started immediately - the study showed that life expectancy is extended by almost a year if you take chemo early. Before that study, chemo was administered as a last resort therapy when other therapies stopped working.)

Regarding your husband's hormone therapy, i was actually given a different hormone for my first shot. Lupron actually spikes the PSA before causing it to drop. Because of my spinal compression, my oncologist got the insurance company to approve another drug that drops the PSA from rising immediately. This kept me from possibly being paralyzed. You might ask for that. Also, I'd insist that the shot be administered faster if you can.

I did not have too much trouble with the chemo. Just some fatigue and mild body aches. The best thing you can do is to exercise - I walked 2-3 miles a day. You have to force yourself, but it's worth it!

I also used something called a 'polar cap', which allowed me to keep my hair. My wife is a breast cancer survivor and said that losing your hair makes others treat you differently. Since I was still working full time, we decided to try it. It works perfectly. I did not lose a hair on my head! If you are interested, you can find it on the internet. Look for The Polar Cap Company. Takes a lot of prep work in advance. I liked it.

I'd also recommend you purchase a book about Prostate Cancer by Dr Walsh. It is sometimes called 'the bible' for prostate cancer. It is the most informative source I have found. You can get it on Amazon. Get a recent edition - it is updated for all the most current treatments.

I'm sure your husband will do just fine as you start this journey! Please let me know if can help further!

God Bless you all! We are all praying for you!

James

[Blair77 in reply to JamesAtlanta]

Thanks James for the information. My husband started Casodex oral last week in preparation for the initial flare. He will do 6 cycles of the chemo and I hope he does as well as you did. I'm very worried about the side effects but hoping things go well. We will check out the book and the polar cap. Thanks!

[Neal-Snyder in reply to JamesAtlanta]

Some of what Patrick Walsh says is what they believe at Johns Hopkins, but not at the other Comprehensive Cancer Centers. So it's important to speak with an oncologist, preferably a urological oncologist, at another center (or a renowned oncologist elsewhere) before treating Walsh's book as your PCa bible. Also, there's always a gap in time between when a book is completed & when it's published, so even a new edition is not as up to date as speaking with an expert.

[PaulTaylor]

I was also diagnosed at 41 with metastatic disease. My PSA was not so high, but extensive lymph node spread. As I read the thread, it looks like you are on a hormone therapy regimen, combined with chemo, which is aggressive but in my book, warranted. I hope that the hormone therapy includes more than lupron? Happy to connect privately and chat with you and your husband if you'd like another "young" guy to talk to who has been thru many of the same treatments over the last five years - lupron, casodex, avodart, metformin, Zytiga, Xtandi, Provenge, surgery, chemo, etc. Still going strong, working, etc, with no detectable PSA or mets right now. Paul

[AlanMeyer]

Blair,

I don't know whether I should post this or not because I don't want to create false hopes. However I recall a posting by nameless9999 that is relevant to your husband's situation. If I remember correctly, he had a combination of Lupron and docetaxel (a chemotherapy drug) that took his PSA from 850 to 0.07.

That was a terrific and unusual response to the treatment. No one should expect that they will do that well. However I wanted you to know that, in spite of the high PSA, good outcomes are still possible.

I wish the best of luck to the two of you.

Alan

[Blair77]

Thanks everyone for the support. So far we have been told Casodex, Lupron and 6 cycles of docetaxel. Nobody has mentioned surgery or radiation.

[AlanMeyer in reply to Blair77]

That's right. As I understand it, surgery and radiation are used 1) when there is a hope of cutting out or killing all the cancer and curing the patient, or 2) cutting out or killing a painful metastasis to relieve the pain. Your husband doesn't fit either of those descriptions because he has cancer all over his body.

So instead of that, the docs are treating him with drugs that can kill cancer everywhere in the body. Our hope is that they'll track down and kill every one of those rotten mutated tumor cells or, if any are left alive, they're so beaten up and poisoned that they can't even think about dividing and multiplying

Nowadays, with all the research that's underway, I have hopes that we don't have to kill every cancer cell, we just have beat them down for a few years until the next treatment comes along to beat them down again.

We saw that ex-President Jimmy Carter had his cancer completely beaten down at age 90 by the new drug Keytruda. Now I see that they're testing it for prostate cancer and getting outstanding results in some patients. See:

prostatecancernewstoday.com...

Alan

[Blair77 in reply to AlanMeyer]

I sure hope so for all of us ❤