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Cancer: Prostate Message Board

Cancer: Prostate Board Index

Hi again Augerty,

I'm back, and here are some more thoughts in green, continuing from about an hour ago. Jim

On 10-01-08, he started taking Casodex and was given a Lupron injection.

[COLOR="DarkGreen"]While I'm wondering why the oncologist did not think it wise to protect your dad against the potential consequences of flare, especially if there was any indication of spread to a very common prostate cancer target - the spine :(, it seems to me that "the" (more than one?, a urologist too?) doctor's use of at least two drugs - Lupron and Casodex, suggests the oncologist is at least somewhat familiar with hormonal blockade therapy. As a layman, it's quite possible my doubtful estimation of the doctor is way off the mark, and perhaps he deserves much more credit. But I'm highly confident the question about the absence of protection from flare is a good one! [/COLOR]

On 11-11-08, another bone scan and PSA screening were done. The results show that his PSA has increased to 9.5 and the cancerous spots (which are in many different bones in his body) have increased in size.

[COLOR="darkgreen"]That's a rapid increase in PSA in about two and a half months, and the increase in size of the spots is, of course, not a good sign. As you might expect, it's also not good that the spots are in many places in your father's body; research has demonstrated that patients with fewer spots tend to do considerably better. Do you know whether your dad has pain from the bone spots? Research has shown that patients with many spots but no pain do considerably better. Keep in mind that research is historical - rear view mirror looks into the results for men who were treated before some of today's advances were available. Men can often do better now, but the historical look helps gauge seriousness.

(Your father's experience, unfortunately, does not rule out the few really bad actor kinds of prostate cancer, such as small cell prostate cancer and endometrial prostate cancer, among others. He may not have those; my impression is that many men with numbers like your father's do [U]not[/U] have them. But at the moment, those are possibilities.[/COLOR]

The oncologist said that 2 things were possible:

1. My father experienced a PSA "bounce" immediately after starting the Lupron.

[COLOR="darkgreen"]My somewhat savvy layman's impression is that a PSA bounce should not be long lived, not as long as two and a half months from October 1 until November 11. However, I'm not a doctor and your dad's oncologist hopefully has a lot of specialized prostate cancer experience, so he may be correctly assessing the possibility of a bounce. It does seem reasonable to me that an unprotected flare could have turbo-boosted an already aggressive case, especially if "hormone refractory" prostate cancer is disproportionately common in your father's case (not yet known), so that you would see a boost in PSA that still is present and an increase in the size and number of spots. My own bounce looked like this: 12/4/1999 - baseline (first ever PSA) 113.6; Lupron shot 12/20/1999; 12/27/1999 PSA 125 - appears to have captures a snapshot at some point during a flare; 1/11/2000 89.0; 2/24/2000 15.4, and declining to eventual lowpoint of less than 0.01 on 5/3/2002 (an unusually long time to get to <0.01, but I did get there! :D).

Obviously your father's oncologist is familiar with the flare (or "bounce") phenomenon. Was he the doctor who prescribed and gave the Lupron shot? I'm still trying to understand why a doctor aware of flare and its potential for a patient with known bone mebastases would give a Lupron shot without using an antiandrogen first to protect against potentially serious injury from flare. :confused: :confused:[/COLOR]


2. My father's cancer may be hormone refractory and he will not respond to Hormone therapy.

[COLOR="darkgreen"]Unfortunately, that is a possibility. In reality "will not respond" may often mean that a substantial portion of the prostate cancer cells are refractory, but not all, with some of the cells responding, meaning ceasing PSA production or at least going dormant after a few months or actually dying due to continued hormonal blockade treatment, but with a substantial portion of the cancer unaffected and continuing to grow.

However, after talking as a patient representative with quite a number of doctors at medical conferences and research proposal reviews (having an unusual case can have its "perks"), I'm convinced that a great many doctors, other than a surprisingly small number who are expert in hormonal therapy, do not know how to determine that a patient is hormone refractory and will reach that conclusion much to early. That can deprive unfortunate patients of therapy that could work well if managed better. Also, being at a major institution - such as a well-known, highly respected university, is [U]no[/U] guarantee that the institution's staff is uniformly or even at all expert in hormonal blockade, something to which I can personally attest! :( (School of Hard Knocks diploma here)

At the least, figuring out whether hormonal blockade therapy (with Lupron and Casodex) is working should involve testing for the testosterone level. Some oncologists feel the level should be at least below 50 (down from the typical norm that ranges from about 300 to about 700), but the doctors I now consider truly expert want the testosterone to be below 20 if the PSA hasn't fallen as expected. Testing for LH (Leutenizing Hormone) is another option. There are also a number of other tests that can be run, as discussed in the Primer.

Lupron shots can fail for a number of reasons not related to the patient's case. While not frequent, they are sometimes improperly mixed, expired or faulty components are used, or the material is injected into fatty tissue instead of muscle, which is no good. Also, some patients clear the medicine from their bodies exceptionally fast - so fast that the cancer has time to bounce back before the next scheduled shot is given. If any of these caused a patient to respond poorly, then the problem can be solved (such as by more frequent than normal shots). If your father's shot was a three month shot and the increase in PSA occurred well before that point, the latter is unlikely, but it is a possibility I suppose.

If your father is truly hormone refractory at this point, there are several options, and a number of patients have had amazing responses to these other tactics. If it were me and I knew what I know now, I would want one of the extraordinarily knowledgeable medical oncologists who specialize in prostate cancer handling my case. A non-specialist, say an oncologist who might deal with all cancers and all kinds of patients (men, women, girls, boys), would just be too unlikely to be up to speed on the options.

Here are some other things I would want very seriously considered soon:

Testing for bone mineral density with a Quantitative CT scan, as discussed in the Primer instead of a DEXA scan in view of your dad's case, and probably starting infusions every three months with the bisphosphonate drug that is by far the most powerful: Zometa. It helps to have a doctor with expertise with Zometa, as there is a potential risk of a serious jaw bone complication, atrial fibrillation has recently become a concern, and the first infusion needs to be handled to avoid or minimize a very unpleasant "acute phase response" (as discussed in the Primer). Decreased bone density is commonly found among prostate cancer patients, and hormonal therapy is likely to initiate or futher decrease density - not directly a cancer issue, but important. On the really good side, Zometa has often helped reverse some bone metastases. (I've done very well on two of the mildest bisphosphosphonates, Fosamax and more recently Boniva).

Your father's vitamin D status should be assessed, because vitamin D, in addition to being important to bone health, appears to be connected when inadequate to prostate cancer. Inadequate vitamin D is epidemic among prostate cancer patients, with many having a 25 hydroxy vitamin D level well below 30. The doctor's I follow want to see the 25 hydroxy vitamin D level fall approximately in the 60 to 100 range, which very likely will require supplementation with vitamin D3 pills, or perhaps with prescription Calcitriol.

Addition of Avodart or finasteride to the regimen of Lupron and Casodex. The Primer explains the value of this, though I would be happy to go into it too. My main therapy, which I've written about on this board, has consisted of intermittent triple hormonal blockade involving Lupron, Casodex, and finasteride.

Someone should educate your father on coping with the set of potential side effects of hormonal blockade therapy. Many doctors seem to be unaware of the availability and effectiveness of coping tactics, which is really sad. :(

Diet, nutrition, supplements, exercise and stress reduction (tricky when your in the early days of facing a challenging case) also appear to be quite important to achieving maximum success. Is your father aware of those tactics? In addition to the Primer, the book I consider as the other indespensable resource for orienting us patients with advance cases is "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers, MD, 2006. In addition to a marvelous, highly readable job covering the subjects in the title, Dr. Myer's book delivers a huge dose of optimism! :cool:

Please keep in touch. Facing a challenging case is difficult, and your father will probably do much better because of your help. :cool:

Your father's case is going to be very far from a cake walk, but many encouraging developments in just the past few years provide a real basis for hope! :angel:

Good luck to you, and keep your spirits up! :)



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