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Cancer: Prostate Message Board

Cancer: Prostate Board Index

Hi MrSunshine and welcome to the Board!

I’m identifying with you because we are close to the same age, my baseline PSA (back in late 1999) was just about the same as yours, and my CT scan back then was negative. My bone scan was also negative, as probably was a ProstaScint scan (now rather old technology), so I did not face the metastases that you have. My Gleason was somewhat lower, at 4+3=7, but every biopsy core was positive, most 100% cancer. I have been learning about prostate cancer ever since my diagnosis, and now, thanks to a curative attempt with modern radiation technology in 2013, supported by modern imaging and androgen deprivation therapy, my PSA tests indicate that I have been cured, though that is not a guarantee.

I now know enough to say that the course for patients like you is not usually easy, but you do have a good chance of outliving the disease with at least fairly good quality of life, and you even can take shots at a cure. :)

It is really too bad that your oncologist or his or her assistants have spent so little time with you, but, unfortunately, that happens for many prostate cancer patients. :( Fortunately there are some wonderful resources to help orient patients, and I’ll address those separately. With such short consultations, it is highly unlikely the doctor advised you about important measures you need for countering the typical side effects of your treatment regimen, which is essentially what is known as “androgen deprivation therapy”, or as “hormonal therapy”, or by a few other similar names. I was on a form of that therapy intermittently from 1999 through April of 2014. For many of us it is highly effective, though for some its effectiveness is limited in time to just several years. For many others of us, especially with non-metastatic prostate cancer, it can easily last for ten years or even much longer, as in my case. The newer drugs, which you are on, should be even more effective, though, in your case, the situation is more challenging as indicated by the finding of bone metastases.

Your Treatment: I like the prescribed program! :cool: In fact Lupron and Casodex were the two primary drugs of my program for many years. However, I’ll move straight to Zytiga (technically known as abiraterone acetate), as that is the most potent drug for you. It is kind of a replacement for Lupron and is far more powerful, mainly in knocking out testosterone production from any source, not just from the testes. Therefore, to me it seems redundant to also prescribe Lupron, but I am not a doctor, and doctors I respect are using that combination of Lupron plus Zytiga. I really doubt they would do that if they were not seeing some benefit, so I’m thinking it is wise. It is important to reduce testosterone because it is one of the main fuels for most cases of prostate cancer (but not all). Because your PSA is so high, I suspect you will experience a dramatic decline in testosterone as I did. Testosterone is also the main building component for a high-test version known as DHT, for dihydrotestosterone, which is a far more potent fuel for the cancer.

However, even when some patients achieve a very low level of testosterone, at least using Lupron and similar drugs – maybe not with Zytiga, they still have a much too high level of DHT, which can wreck a hormonal blockade program. Patients on Lupron and Casodex, like I was, needed to be monitored for their testosterone levels (should have dropped below 20, and DHT, which should have dropped to about 5 or, even better, lower (using units used in the US). Some men cleared Lupron from their bodies unusually quickly, and sometimes it was not properly administered, so monitoring was pretty important. Now that patients like you are on Zytiga, I’m not sure how important it is to do this monitoring.

Casodex is in the “antiandrogen” class of drugs. It is now not so expensive, and far less expensive than its recent sister drugs, which are far more potent, in the same antiandrogen class, Xtandi (enzalutamide, which has been around for several years now), and a closely related new-comer, Erleada (apalutamide, available just since the spring of last year, 2018). The standard and FDA approved dose of Casodex is 50 mg. However, the experts I have followed routinely prescribed a dose of 150 mg daily for their patients with metastases. (On the other hand, I’m not sure they would feel that was necessary now if those patients are also taking Zytiga.) What these drugs do, rather than reducing or eliminating the fuel for the cancer cells, is essentially to block the fuel ports (called androgen receptors) on the surface of the cancer cells. The newer drugs are excellent at blocking those ports and not falling off. The older drugs, like Casodex, were not as good at competing for those positions at the ports and they tended to fall away after a time. That’s enough for now about Casodex.

Xgeva (technically denosumab) is a potent agent for maintaining your bone mineral density (BMD) which would otherwise be reduced when your estrogen is sharply reduced, which happens when your testosterone is reduced because male estrogen – essential for protecting BMD – is made by the body from testosterone. I was on weaker drugs – Fosamax and later Boniva - to protect BMD, but they were enough to do the job for me.

For my last round of ADT I was on estradiol (estrogen) skin patches to protect BMD. I’ve heard one expert advance his theory that estrogen also has another important function: it prevents, he believes, conversion of more typical prostate cancer cells to more dangerous cells known as “neuroendocrine” or “small cell” for men who are on profound ADT, especially when they are on Zytiga or Xtandi. I recommend you learn how to use, which is run by the US National Institutes of health, and keep track of developments on neuroendocrine conversion of prostate cancer cells. Lots of doctors treating prostate cancer seem unfamiliar with this issue, but, if you can find an expert, you should talk to him about this. Hopefully we will know more about how to handle this challenge in a few years.

About your scans: While it is not good to have an aggressive cancer (Gleason 8) that is already metastatic, as you know, it is good that these older type scans did not detect wide-spread detectable (meaning within their range of sensitivity) disease. There are advantages and disadvantages to having the scans you had instead of better ones. The advantage is that you are more likely to qualify for a drug that targets bone metastases using an isotope of radium known as Ra223, brand name Xofigo if you have the scans you had. Insurance should cover that drug if you have bone mets but no mets to soft tissue, such as lymph nodes, liver, etc. Therefore, it helps to have a scan that is not super sensitive to soft tissue mets, in other words, a CT scan. (Mine was negative too back in 1999, as was my bone scan.) It takes a fairly large metastasis, around the size of a pea, to enable the radiologist to declare a metastatic spot based on a CT scan image. You should ask your doctor about going on Xofigo.

The disadvantage to the older, less sensitive, less specific scans you had is that your doctor and you do not get to see additional metastases which much more sensitive scans are able to detect – down to a very small size, around the diameter of a beebee. A number of such scans are available. One current leader is known as the Axumin scan, for instance. Imaging is extremely important for patients like you with challenging cases because some cancer cells produce little or no PSA; while PSA is a paramount way of monitoring most cases, for that small proportion of patients whose cancer cells produce no PSA it is not helpful. Unfortunately, patients can have cancer cells that are detectable with PSA and other cancer cells that are not. That underscores the importance of imaging and other testing, such as the BRCA-2 gene test. The advanced scans are revolutionizing care of patients with challenging cases who have just a few metastatic spots.

For those with three or fewer detectable spots, there are encouraging results with elimination of those spots by surgery or radiation. Some such metastatic patients even seem to be cured! (One, with the highest PSA that I have ever hears of, far higher than almost all I have known about by studying research, had a PSA of about 25,000 :dizzy: yet now has had no evidence of disease for several years and has recovered much of his quality of life!) Many doctors treating prostate cancer seem to be unaware of how important modern imaging is for their patients welfare.

I’m getting tired of tying and you are probably tired of reading, so I’ll break off for now.

Hope to hear more from you, and good luck! :wave:

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