Newly Diagnosed any advise?

[jorton]

My brother in law aged 60 just diagnosed metastatic in pelvis gleason scale 9. Life expectancy 18 month to 2 years on hormone therapy looking at next steps.

[Darryl Partner]

What was his psa when he was first diagnosed?

[jorton in reply to Darryl]

20

[YostConner]

Sorry to hear this. He should consider having his care by a leading cancer center. There are newer drugs (in addition to regular hormone therapy) that may help.

[jorton in reply to YostConner]

Yes will do but unfortunately in good old Blighty we can only get what NICE all pay for which is not a lot. The immunocology based therapies which are FDA approved have been turned down by NICE

[YostConner in reply to jorton]

How about Zytiga and Xtandi?

[HalC]

A friend's husband was diagnosed with a PSA of 8000. That was probably 15 years ago - and although the journey has had some challenges he's still here to enjoy his wife, kids, and grandkids. Hang in there and find the best docs in your area!

[Hidden]

I essential was faced with this 12 years ago; expecting to live for 2-4 years. The best advice that I received was to find a Medical Oncologist who specialized in Prostate Cancer, preferably one who teaches and researches PCa in an academia setting. I found one and underwent a Chemo trial within two months of developing two metastatic lesions on my spine. Today, my PSA remains undetectable, I was taken off of all hormonal therapy in February 2010 and even take 4 mg of Testosterone. I was most fortunate to live outside of Houston, Texas and its three Medical Schools - University of Texas, Baylor University, and Cornell University and their academic researchers.

Tell your BIL to keep kicking the bastard,

Gourd Dancer

[lyrikos]

This life expectancy thing is really misleading.....try not to listen or read anything concerning this ...it will only get you stressed and confused....i never understood how doctors can easily predict and say that someone will live this long or that long....pffff

[Hidden]

Hello

Not sure what is available in the UK. The CHAARTED trial has demonstrated a significant survival benefit from the combination of docetaxel (Taxotere) chemotherapy plus hormone therapy for patients diagnosed with metastatic prostate cancer. If possible he should find a doctor familiar with this protocol. You can search the web for information on the trial results. It is quite an important trial and this protocol has helped many men. However the combination is most effective when given has a first line treatment.

The life expectancy information is nonsense and should not be considered a reasonable guideline in today's world. I have a rule of thumb when a doctor gives a new patient a life expectancy number; find a new doctor.

Good Luck

Bill Manning

[Neal-Snyder in reply to Hidden]

Good message but the last sentence is too strong. I have pumped a urologist &several oncologists (including 1 at UCSF) for life expectancy guesstimates, & they didn't deserve to be fired just because they answered. However, I've outlived all the predictions, & I have years to go. The earlier predictions got me to retire, so I could have a relatively healthy period of retirement. I doubt that I'd be doing this well if I hadn't replaced the stress of work with the pleasures of retirement.

[Hidden in reply to Neal-Snyder]

I don't think it was too strong when dealing with an untreated patient. Further down the road after seeing how the cancer reacts to treatment a better estimate might be possible is still a SWAG. Anyway it is just my opinion. You seem to happy since you outlived your estimate.

[Neal-Snyder in reply to Hidden]

Maybe you're right. It surprises me that almost all doctors are so conservative in their predictions that they leave us depressed, which isn't helpful. I am happy, Bill (?)--I've already outlived 2 oncologists' estimates by a decade!

[boc13]

My husband was diagnosed almost 10 years ago. PSA was almost 70. Final gleason after radical surgery was 9/10. Stats are stats. Get to the best doctor/facility you can get to. He is still working. Diagnosed in his bone this past year and will probably have to go out on disability soon, but he is still going strong.

[Dan59]

Jorton, others have stated this, but those or median statistics and old at that, I was diagnosed stage 4 with bone and lymph node mets back in 2006, my Gleason was 10 my original psa was 148, it has been a long ride ,but I am still on xtandi prechemo. It is important to believe no one that says you have a year to live, have him learn all he can and find the best Doctors, often these are at Hospitals affiliated with major learning centers , ie Harvard and Dana Farber and such in your area , best of luck.

[pjoshea13]

That 18-24 month estimate sounds like what one can expect before Lupron fails. There are other options when that happens.

-Patrick

[gusgold in reply to pjoshea13]

Patrick, what treatment are you currently receiving

[pjoshea13 in reply to gusgold]

Gus,

I hesitate to answer since I wouldn't want anyone to be influenced by my approach.

My RP & salvage radiation failed immediately 12 years ago, when there were few options. I wanted to avoid Lupron for as long as possible because of the 18-24 month failure that is so common.

I did various things involving supplements & testosterone. The years went by. & then, after some nasty intestinal issues, the PSA started to rise fast.

I tried a product (no longer available as such) which quickly lowered PSA (& T). I had become convinced that a 12 months on-phase for IADT was too long. Being castrate for 12 months can lead to CRPC after only a few cycles. So I decided to cycle to testosterone after 3 months (shock treatment) - & back again after 3 months.

I would have to check, but I think I am coming up to 5 years of that.

Last year, I had a spinal met at L5 radiated. I don't know why there was just the single met. My PSA fell by two-thirds, so it obviously accounted for the bulk of my cancer.

I am in the T phase right now. Another weekly testosterone injection tomorrow. I'll measure PSA at the end of 3 months.

I have to say that I'm surprised to be around still. My urologist says the same. For him, metastatic disease is the beginning of the end. A surprising percentage of patients don't get mets. For those who do, his belief is that metastatic PCa is "everywhere" & should not be spot-treated unless there is pain. I don't agree with either of those statements.

I think that we can do much to avoid metastases by addressing coagulation issues. I believe that micro clots facilitate migration - & are essential. Even after mets have occurred, we need to shut down migration.

I see Lupron, Zytiga, etc, in my future, but my motto is don't rush into treatment, because the mean time to failure of every treatment is distressingly short.

I have had 12 years without the Lupron fog, etc. I feel good. & perhaps I'll get away with another few years. But the cancer is aggressive - PSA goes up 50% in a month. So far, I have been able to knock it down in the next cycle.

I get beaten-up for not having an oncologist, but I would only want one who was OK with what I am doing. I have heard of a guy 4 hours away who may be the one. Perhaps next year. LOL.

Best, -Patrick

[gusgold in reply to pjoshea13]

Patrick, I like your approach to preventing CRPC. I wonder if 3 month on/off cycles of casodex would have similar results. Since T is not lowered on casodex..T levels would be normal during the off cycle. I assume you are referring to PCSPES..so DES would also be an option. Based on your 5 year results I think you are onto something. One fact for sure PCa is not fatal until it becomes CRPC

Gus

[pjoshea13 in reply to gusgold]

Hi Gus,

PCSPES had been withdrawn by the time I was aware of it. But there was Prostasol - renamed Quercetin Plus (Q+) by the time I bought some. Whatever unlisted ingredient was in it back then is no longer there.

Some men on Q+ turned to low-dose DES after Q+ became ineffective. Typically 1 mg. Much lower than the doses used before Lupron. In a few cases, not even every day.

DES is interesting, since some men who have failed Lupron respond to it. In fact, I know of one man on Q+ whose body does not respond to DES in the way he would to elevated estradiol [E2]. It has no effect on testosterone [T] at all. He has a PSA close to zero & T in the upper range. I am envious.

DES is a synthetic estrogen & competes for binding to the alpha estrogen receptor (ERalpha). As such, it is an anti-estrogen in PCa cells. The role of estradiol in PCa doesn't seem to interest many. Dr. Myers has dismissed the subject & Dr. Morgentaler ignores any possible E2 growth-promoting role when T is low.

I'm intrigued by the idea that DES has activity beyond its ability to cause castrate-T levels in most of us.

The sad thing about IADT, to my mind, is that in the off-phase, T takes forever to recover, & rarely to a previous high - & the previous high is often near the cut-off for hypogonadism. A rapid return of T via T-patches, say, would speed men on IADT through the longish period where estrogen is dominant.

I fear E2 more that T. Some think that T is a powerful hormone, but I can say that a T > 1,000 ng/dL has never made me want to drive recklessly or get into fights - all I get is a feeling of well-being. I admire women for putting up with E2. Now that's a powerful hormone!

Oh, & yes, I have had similar thoughts about Casodex. & why not Xtandi as monotherapy during the 3-month on-phase?

-Patrick

[Dan59 in reply to pjoshea13]

Patrick, what are your thoughts on DES 1 mg for someone(myself who has had many good rechallange responses to estrogen patches but is really no longer working, as you say DES is synthetic, is it a different form that may work where estradiol would not work, 1 mg being a lower dose than the 5 and 3 mg more associated with blood clots. DR Glode had a good paper on 1 mg des. Thanks

Dan

[pjoshea13 in reply to Dan59]

Dan,

One difference between estradiol [E2] & DES is that DES competes with E2 for binding to the estrogen receptor ERalpha and, to the extent that happens, ERalpha is eliminated from any possible role in PCa promotion.

DES may also independently participate in cell death.

& DES can inhibit telomerase. This is the enzyme required to maintain telomere length. Shortening of the telomere in normal cells limits the number of times they can divide. It's one of the problems that cancer cells have to get around. [1]

In most men that I know of, 1 mg is sufficient for T to become castrate.

I have written about blood clots & the need for all men with PCa to monitor D-dimer & fibrinogen. I have used nattokinase to control those markers, so am not concerned about clots. If I had to be on 5 mg DES, I might need a higher dose of nattokinase.

Clots are a threat even in untreated men with PCa. There are papers that suggest that "healthy" men who develop DVTs should be screened for undiagnosed cancer.

-Patrick

[1] ncbi.nlm.nih.gov/pubmed/206...

[Hidden in reply to pjoshea13]

There is a treatment that goes by "BAT". It is lupron, to zero out testosterone from the testes, plus testosterone injections to cycle T levels between 0 and 2000 (where normal is 400). Is this sort of what you are trying?

[irwinb3]

I suppose if someone did absolutely nothing and let the cancer take its course, yes it will take ones life. I had Gleason 9 in 2009 and it spread to my spine then with the right meds and sups it healed. Still here. Had prostate removed, 39 rad treatments, ADT. Agree with others, get to a highly respected cancer treatment center and an oncologist. Also get a second opinion. Tell your BIL that he will be here more than 2 years. Many men on this sight have APC and many are 10+ years.

[Magnus1964]

I was diagnosed with a PSA of 39 and Gleason score of 9. My doctor told me I had 5 to 10 years to live. That was 24 years ago. Don't let anyone tell you how long you have. What hormonal oblation therapies has he been on and for how long?

[Cancersucks]

From our experience and exclusively my opinion, life expectancy MAY depend on how advanced the cancer was when diagnosed and how long it took until castrate resistant and the gene variant AR-V7. Ex had widespead Mets with uncontrolled bleeding from bone marrow metastasis at diagnosis. He was castrate resistant after 6 months on Lupron and has failed Xtandi and Zytiga (hormone therapies) in additional 7 months. His case is quite uncommon and he is young. As you can see, we all have different stories. One could not possibly know their life expectancy at the beginning of treatment.

[JoelT]

To sum up all of these excellent comments, nobody can possibly tell anyone how long they have to live. The overwhelming agreement of this group (I don't hesitate to add my agreement) is that prostate cancer will not kill you in the time period your doctor mentioned.

I also urgw that you don't lose Bill's comment about the findings of the CHAARTED Trial. The CHAARTED trial has demonstrated a significant survival benefit from the combination of early (now) docetaxel (Taxotere) chemotherapy plus hormone therapy for patients diagnosed with metastatic prostate cancer. This should be your treatment of choice.

Joel

[Hidden]

ADT plus docetaxel is prteey much the first step. I'd say Provenge is next, and test PSA every two weeks once you get under 5, to start the Provenge ASAP (2nd rise in PSA), unless it gets approved for earlier by then. Then Radium223 for the pelvis. Take calcium and 20,000IU D3 to help bone uptake. Watch the progress of NCT02478125 - Burixafor. If that trial works out, do that also. I am skittish about Enzalutimide (because of V7) but I'd say it's next, and there could easily be a fix for V7 by then. If not, try BAT.