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Old 04-18-2012, 05:54 PM   #1
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Not very happy...

Irv had his second blood test after being on his "off period" of triple androgen blockade. We've already established that the Avodart isn't effective in driving down his DHT as it was high after a year of being on hormone therapy and it went even higher within a couple of weeks after being in the "off period" while maintaining with Avodart alone.

After one month off the two other drugs, his PSA and Testosterone levels were pretty much the same, but now, after two months we're seeing a change.

Although his Testosterone is still in the castrate level, actually a little lower than the last check, his PSA has risen from <.02 to .02.

I advised Irv to check if he can at least try Proscar. I doubt the doctor would allow him to double up his Avodart....and if there is not effect then 2X0 is still ZERO. I've hear that when Avodart doesn't work for some men, it's possible the Proscar will be effective..It would be nice to try it BEFORE he goes to see Dr. Myers. I hope that we can do something soon....I feel like this is getting more and more confusing and it doesn't make sense. I hope we can do something soon to try and drive down the dht, because I can't imagine what else it could be that's

Anybody know of this issue? This board is getting really quiet and I wish I could hear more from everybody.

Rhonda

 
Old 04-18-2012, 07:07 PM   #2
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Re: Not very happy ...

Hi Rhonda,

I wouldn't make too much of <.02 to .02 -- that is a negligible difference. Is that even outside of the standard error of his test kit? As you know, there are other androgens, aside from T and DHT that activate the androgen receptor.More to the point, however, is that his PSA is supposed to go up during the off-period.

As I understand what you are saying, you are wondering if he should also take Proscar in spite of his Dr's advice -- so I don't understand why you ruled out doubling the Avodart dose (it inactivates 2 enzyme sub-types while Proscar inactivates only one).

I also don't understand the value of continuing the 5ari at all during the off-period. If the goal is to keep the androgen receptors hormone responsive as long as possible, and one of the goals of the off-period is to extend that time, why would you continue the assault on the androgen receptors continuously? It seems to defeat the purpose of Intermittent ADT. Is there any evidence that such a strategy can help? This seems to be causing you a lot of, perhaps needless, worry.

- Allen

 
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Old 04-18-2012, 09:01 PM   #3
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Re: Not very happy ...

Quote:
Originally Posted by Tall Allen View Post
Hi Rhonda,

I wouldn't make too much of <.02 to .02 -- that is a negligible difference. Is that even outside of the standard error of his test kit? As you know, there are other androgens, aside from T and DHT that activate the androgen receptor.More to the point, however, is that his PSA is supposed to go up during the off-period.

So is the testosterone....and it is my understanding that the testosterone and dht are what drive the cancer...that's why hormone therapy, apparently, works...because it shuts down the testosterone, right? Well....this is very confusing because dht is supposedly the more potent fuel for the cancer but, still, even with high dht, the psa was driven right down to undetectable levels while on hormone therapy. And now, in the "off period", one would think that you would see a rise in testosterone and that would result in the rise in PSA...but the PSA is rising in spite of the the testosterone remaining in the castrate level. As for the standard error...I doubt it...since the last three tests came back <.02 and when the doctors talked about standard error the last time the PSA showed a small increase, it just kept increasing.

As I understand what you are saying, you are wondering if he should also take Proscar in spite of his Dr's advice -- so I don't understand why you ruled out doubling the Avodart dose (it inactivates 2 enzyme sub-types while Proscar inactivates only one).

I didn't rule it out Avodart....He's on it....It isn't bringing down the DHT.... Apparently there has been some evidence that some patients don't respond to Avodart and they respond to Finasteride....Allan, I just want to bring Irv's DHT down....We'd try both options but we can't, at the moment, get a doctor to prescribe it.

Furthermore, the urological oncologist told us that the Zoladex, alone, would lower both the Testosterone and DHT (as DHT is a derivative of Testosterone)....but the problem is, how can he be so sure when it isn't standard procedure to test for the DHT to see if, in fact, that's happening. So, here is a case, and I know of others, where the injection is NOT bringing down the DHT. We only know that because we researched enough to know that DHT is the more potent fuel for the cancer and we requested the DHT level be tested. Otherwise, we still wouldn't know and the doctor would still be assuming that the Zoladex lowered it, which it did NOT.


I also don't understand the value of continuing the 5ari at all during the off-period. If the goal is to keep the androgen receptors hormone responsive as long as possible, and one of the goals of the off-period is to extend that time, why would you continue the assault on the androgen receptors continuously? It seems to defeat the purpose of Intermittent ADT. Is there any evidence that such a strategy can help? This seems to be causing you a lot of, perhaps needless, worry.

This is explained by top doctors like Dr. Myers, Strum and Leiberman who are believers in triple blockade and have seen much success with it. Perhaps it doesn't always work because some men don't respond well to Avodart and the DHT remains high, or maybe there are more complex reasons that I don't have the capacity to understand. I've read very recent medical abstracts on pubmed which have explained that evidence shows that Avodart only has "modest" results (I've mentioned those abstracts in past messages on this board) but, in my mind, any results at extending the "off period" would be better than none...and every case is different so I don't think you can safely say it will never work under any circumstances because, for many, it does. Are there any clinical trials done, to date, which clearly demonstrate that triple blockade androgen deprivation therapy has detrimental effects on the cancer or no effect at lengthening the off period? If there are, double blind and all the necessary criteria to make it recognized as a legitimate trial, I'd like to see it. If not, I believe that in order to see if it works, we have to first, manage to control the DHT levels, which, so far, we haven't been able to do for Irv. At any rate, I'm probably the wrong person to ask about this. If there is any evidence out there that this can or cannot work, I believe a specialist in the field, who's seen success with it, would be more equipped to answer that.

Lastly, when it comes to Irv's prostate cancer, no worry is needless, Allan. This is a life threatening disease he has and I'd prefer to try and understand it as much as possible. It's when things don't make sense to me that I question and read and look to well respected professionals in the field who seem to be most proactive, who are visited by patients from all over the world. If the outcome is the same, well then, at least we know we fought a good fight. In the meantime, here in Toronto, the outlook was grim...Things we heard..."Death isn't imminent", "With a little luck, he'll live for 15 years" (and that was before the pathology report ....I bet the outlook would be worse now because the pathology report revealed seminal vesicle invasion, as an example, which did not show up on the biopsy)....and from a well respected psychologist... "You have very serious cancer...This disease is going to kill you." and "How do you feel about losing your future, your 80s, your 70s, your 60s?"

I think that it is common belief that attitude is so important to fighting this disease. If you believe you will die soon, it's easy to give up the fight. NOBODY has a crystal ball...NOBODY...My mother had stomach cancer back in 1990 and her prognosis was 3 months. She lived for 7 months but it would have been longer had she not been killed in a car accident. I've heard so many stories of people defying the doctor's predictions, because, really, each patient and each disease is so different. So, it's up to the patient to get opinions and second opinions, and maybe even more, and try and understand his/her disease as much as possible....and I know from past experience, that periodic worry can be a very constructive thing when it leads to more digging to try and find the answers as much as possible....and then always finding a reason to renew a sense of hope and believe that we can overcome. Science is progressing everyday and NO doctor, with every shred of certainty, can know for sure that the patient will die from the disease he has. It can be highly probable, but never certain. In the meantime, Irv and I will fight this fight together...and, yeah, Allan, I'll worry...because I love him....and it's normal to worry about the one you love when they have a life threatening illness.

Rhonda

- Allen

Last edited by honda50; 04-18-2012 at 09:07 PM.

 
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Old 04-18-2012, 10:59 PM   #4
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Re: Not very happy ...

I think you missed my point. I didn't say a single word against triple blockade. The proof that it worked was that his PSA became undetectable during the on-period, which is wonderful. Perhaps something less than a triple blockade might have done the same thing as it has for many others, but that is a moot point. What I was addressing is the continued use of a 5ari in the off-period, which is a completely different thing from the triple blockade. And the worry I was addressing was in reference to whether the 5ari is working in the off-period, not about your husband certainly.

Clearly this is something you ought to take up with whatever doctors you believe to be the best, and I wish you and Irv the best of luck.

- Allen

 
Old 04-19-2012, 12:12 AM   #5
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Re: Not very happy...

Hi Allen,

I'm sorry if I misunderstood your point but I think that's because any doctor who promotes intermittent triple androgen blockade includes the maintenance with a 5ari during the "off cycle".

Based on the ineffectiveness of the Avodart to lower the DHT, in Irv's case, I don't think that the triple androgen blockade could be seen as fully effective as it would be if it had been. In this case, it may be that the effectiveness, for Irv, was only as good as combination therapy (ADT2). Apparently, there's been some evidence that maintaining with the 5ari during the "off cycle" actually increases that time before having to restart the other medications. This, to answer your question, is the point of staying on the 5ari.

I don't understand what would make the PSA rise, in spite of the fact that Irv is still in complete chemical castration with his Testosterone so low. It makes me think that, although the Zoladex and the Bicalutamide were effective in controlling the cancer, in spite of the high DHT, once those drugs are stopped, perhaps it's the DHT that is now able to activate the cancer. I think it would be beneficial to try to lower that DHT to see if that would have an effect on the movement of the PSA.

My worry isn't whether or not the 5ari is working in the "off cycle" as it is clear from the DHT result that it is not and has never been effective. My concern is that the DHT, being the more potent fuel for the cancer, is now given free reign to wreak it's havoc because there's nothing and never has been anything to hold it back...It is and always was within normal levels. Even the doctors here in Canada acknowledge the fact that DHT is, in fact, the more potent fuel for the cancer, and, according to Irv's urological oncologist, he believes that the Zoladex, alone, was controlling both the testosterone and the DHT. This, of course, unbeknownst to him, was clearly not the case. So, it isn't even a situation where the DHT will take it's time to reestablish itself, like the Testosterone because it never was effected by the Zoladex or any of the other drugs for that matter. Lastly, in all due respect, Allen, I wouldn't be worrying about any of these things if it didn't directly relate to my worry about Irv's disease and his overall survival.

Thank you for your input.

Rhonda

Last edited by honda50; 04-19-2012 at 12:16 AM.

 
Old 04-19-2012, 04:24 AM   #6
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Re: Not very happy...

Rhonda

I admire your “fight” in the care of Irv and the knowledge you have acquired in prostate cancer matters, particularly on the details of ADT treatments.
I noticed however that you describe Irv’s progress in ADT, with regards to the blockade of “manufacture of Fuel” for the cancer. You need to address also the role of antiandrogens in blocking cells receptors to avoid feeding.
These are not prohibiting the manufacture of T or DHT; they replicate the bio structure of androgens and “trick” the cells.
Without antiandrogens effects, one could consider on the possibility of being in castrate levels of T but experiencing an increase of PSA, due to cancer activity. Unblocked cells receptors (AR) provide free feeding on any type of androgen.
This theory is in fact the beginning of HRPC (hormone resistant or hormone independent) condition, but such is only considered in cases with similar results if the patient is still on antiandrogens.

My lay opinion is that the slight increase in PSA is still premature to certify any failure in Irv’s treatment. This is probably common in similar cases. The consultation with Dr. Myers will provide you with peace of mind.

Wishing you both enjoy the off-drugs vacation.

Baptista

 
Old 04-20-2012, 10:43 AM   #7
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Re: Not very happy...

Hi Baptista,

Thank you for your feedback and support. Admittedly, some of what you say is beyond my understanding. However, from what I do understand, I really don't think Irv is close to being hormone refractory yet. He was maintaining very well with the triple blockade and we've only seen a small increase after two months into his "off cycle". Also, I read something that indicated if DHEA-S is low, in spite of the fact that his androstenedione, for some reason is within the normal levels, that his pc is, in fact, hormone dependent. I can't remember which abstract I read it in, but I think I probably either bookmarked and/or printed a copy of it. I just found it strange and unsettling that we haven't yet seen any sign of small increase in Irv's testosterone level (instead we've seen a small decline...how odd), so it makes me wonder what's causing the PSA increase.

I do agree that the best person to run this all by is Dr. Myers and I think we couldn't possibly have chosen a more advantageous time to see him. It will be interesting to see where Irv's PSA is at next month, just two weeks before our scheduled appointment.

Rhonda

 
Old 04-21-2012, 07:43 AM   #8
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Re: Not very happy...

Hi Rhonda,

I've read through post #7 and hope to respond soon. Here are a couple of brief thoughts.

Even though the recent DHT test appeared to show that DHT had not been sharply reduced, the Avodart still may have helped Irv achieve that very low PSA. Avodart affects more than just conversion of testosterone to DHT. One important effect is to reduce blood supply to prostate cells, both healthy and cancerous. That may have and still be happening.

Here's another option: add finasteride to the Avodart. I did that for a few months toward the end of my second off-therapy period a few years ago.

I'm also wondering if the lab is accurately measuring DHT. It is not easy to measure, and, if the lab does this test infrequently, which seems to be the case, they may be not covering something important in the procedure or reporting.

Take care,

Jim

 
Old 04-21-2012, 09:45 AM   #9
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Re: Not very happy...

Hi Jim,

I really appreciate how you throw a positive spin on things.
I hope you're right on both counts where Irv's circumstances are involved. The point of concern for me is that Irv's DHT level showed a rise after stopping the Zoladex and Bicalutamide. So, I wonder, had the measurement actually been innaccurate, what would the likelihood of the movement in the upward direction to have also been inaccurate?

As for the idea of adding finasteride, we raised the idea of that or doubling the Avodart with Irv's urological oncologist and he outright refused to provide a prescription for either one, stating that he might require another strategy and suggesting he make an appointment with him to discuss it. On the other hand, upon raising this same issue with Dr. Myers' office, Irv received an email back suggesting he double the Avodart dosage. Now, I suppose that would depend on whether Irv's GP would agree to writing him a prescription, which is unlikely, based on past experience.

Finally, the mystery remains as to why Irv's PSA has started to rise before his testosterone has done so... but perhaps there's some logical reason which Dr. Myers will be able to explain to us.

 
Old 04-27-2012, 02:56 PM   #10
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Re: Not very happy...

Good news! We saw the doctor today. Apparently, when Irv called in for his latest PSA result, he was told it was at .02, which was an increase from <.02. It turns out that she failed to notice the < in front of the .02!!!!!!!!!!!!!! His PSA is still the same at <.02 after 2 months in the "off cycle".

Well, that made our day!!!! Wahoooooooooo!

Rhonda

Last edited by honda50; 04-27-2012 at 02:59 PM.

 
Old 04-27-2012, 07:52 PM   #11
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Re: Not very happy...

What wonderful news!

You both deserve it! I couldn't be happier for you.

Take care,

Jim

 
Old 04-28-2012, 10:56 PM   #12
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Re: Not very happy...

Thanks, Jim. Now we just have to hope for lots more <.02s in Irv's future.

Rhonda

 
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