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Old 09-25-2009, 04:05 AM   #1
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Back to urologist 29 Sept, what questions do we need to ask?

July, 2004 Positive biopsy GS 3+4=7, PSA 18 Age 54
Aug 04, MRi T3c seminal vessel involvement, Negative bone scan
Oct 04, Started monthly Lucrin, Nov 04 EBRT 7.5 weeks
2/05 Quarterly Lucrin,
Oct 05, PSA 4.7
May,06 Test 1.6 started flutamide
June 06, PSA 2.6, test .4
Nov, 06 All drugs stopped
Mar 07, PSA 11.8 started Zoldex & 50mg Casodex
Apr PSA 4.7, test 1.3; May PSA 3.0, test 1.3; July PSA 2.0 test 1.1, Casodex increased to 100mg
Dec 07 PSA 1.2, test .7; Jul 08 PSA 1.25, test 1.3
Dec 08 Bone density scan, sig loss sarted calcium 1.25mgx2 & Coecalciferol(VitD) PSA 1.7, test .79
Mar 09 PSA 1.8, test 1.0
Jul 09 PSA 2.56
Aug 09, bilateral orchidectomy. All drugs stopped
22nd Sept PSA 2.6

Sorry about all the info, but we need to know wether my husband's doctors are on the right track. I did ask the urologist a couple of years ago about proscar, but he saw no need for it at that stage, Do we need to go there again? I am really concerned that he is now on no drugs at all. He has got to the stage where he can't bear the thought of anymore injections, but is quite happy to take pills.
Is there something else we need to look at????

 
Old 09-25-2009, 08:08 PM   #2
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Re: Back to urologist 29 Sept, what questions do we need to ask?

Hi dairywoman,

Welcome to the board!

I'm sorry that earlier treatment was not curative for your husband, but it looks like he is getting some good care, though I have some thoughts. I'll add some comments in green based on my experience of nearly ten years with hormonal therapy but with no enrolled medical education at all. Jim


Quote:
Originally Posted by dairywoman30 View Post
July, 2004 Positive biopsy GS 3+4=7, PSA 18 Age 54
Aug 04, MRi T3c seminal vessel involvement, Negative bone scan
Oct 04, Started monthly Lucrin,

Lucrin seems to be basically the same drug as the Lupron I have been on and off for about ten years.

Nov 04 EBRT 7.5 weeks

Research has demonstrated that combining hormonal blockade (Lucrin here) with radiation makes great sense for a higher risk case like your husband's.

2/05 Quarterly Lucrin,
Oct 05, PSA 4.7
May,06 Test 1.6 started flutamide

Starting flutamide, an "antiandrogen" class drug to complement the Lucrin, makes sense, especially as your husband's PSA was still somehat high after radiation therapy with a Lucrin assist where the testosterone test indicated the Lucrin is working as it should. It's really good that the doctor is testing for testosterone, but I'm not clear about the unit values. In the US, it's measured in ng/dL (nanograms per deciliter), at least at my lab, and when I'm on my triple hormonal therapy it should be less than 20. The lower limit of the testosterone test at the lab my doctor uses is "<10" (meaning less than 10). If your husband's testosterone is measured in the same units, or even a unit that is 10X greater, his values still indicate the kind of low level that is needed and indicate that the Lucrin is doing its job.


June 06, PSA 2.6, test .4
Nov, 06 All drugs stopped

External beam radiation with two years of Lucrin as hormonal therapy (and with flutamide added) seems a typical course for a case like your husband's. However, I'm thinking that PSA should have been lower before you stop the drugs; but remember that I'm not a doctor. Also, if the testosterone is 40 ng/dL instead of .4 ng/dL, that would suggest the Lucrin was not as effective as it should have been. It's worth resolving the question about the units - whether it's ng/dL.

Mar 07, PSA 11.8 started Zoldex & 50mg Casodex

I can see why the doctor chose to switch to Zoladex rather than go back to the Lucrin, since the Lucrin did not seem to have a real good effect. Also, Casodex is a better drug in both safety and convenience, probably effectiveness, too than flutamide, so that's a good switch. Casodex just became generic in the US in December 2008, so the price is dropping substantially; it's now available as bicalutamide, and I just had a prescription filled for the generic version.

Apr PSA 4.7, test 1.3; May PSA 3.0, test 1.3; July PSA 2.0 test 1.1, Casodex increased to 100mg

I can see where an increase in the Casodex would make sense, especially if your husband was handling it well. I've never been on more than 50, but 100 or 150 makes sense if you want an extra boost.

Dec 07 PSA 1.2, test .7; Jul 08 PSA 1.25, test 1.3
Dec 08 Bone density scan, sig loss sarted calcium 1.25mgx2 & Coecalciferol(VitD)

For nearly ten years now I've been aware of the fairly likely decrease in bone density due to hormonal blockade and the need to counter it. The calcium and vitamin D are fine, but I'm convinced you need a drug in the "bisphosphonate" class to go with it. In the US, those drugs go by these brand/generic names: Fosamax (alendronate - available as a generic), Boniva (ibandronate), Actonel (risedronate), Aredia (pamidronate), and by far the most powerful but with more side-effect risk - Zometa (zoledronic acid). If you can get a copy, the Prostate Cancer Research Institute (PCRI, a non-profit organization) published an excellent article about bone issues way back in the January 1999 issue of their newsletter. They've published more information since then, and the outstanding book "A Primer on Prostate Cancer - The Empowered Patient's Guide," 2005, Dr. Stephen B. Strum and Donna Pogliano, has a lot of excellent information about bones and hormonal blockade therapy.

PSA 1.7, test .79
Mar 09 PSA 1.8, test 1.0
Jul 09 PSA 2.56
Aug 09, bilateral orchidectomy. All drugs stopped

I understand stopping the Lucrin as the orchidectomy does the same thing but permanently. I'm aware of two reasons why the doctor would stop the Casodex: firstly see how your husband would do with just the orchidectomy, but secondly to see if possibly the cancer had mutated in a fairly common way so that it could start using the Casodex as fuel. PCRI has described that in a paper it has published under the heading "Androgen Receptor Mutation" (ARM).

22nd Sept PSA 2.6

Sorry about all the info, but we need to know wether my husband's doctors are on the right track. I did ask the urologist a couple of years ago about proscar, but he saw no need for it at that stage, Do we need to go there again?

I'm a big fan of Proscar, now available generically in the US as finasteride, or of its sister drug that may be even better for most men, Avodart (dutasteride, but not available generically in the US). I've been on finasteride continuously since about September 2000 as part of my triple hormonal blockade therapy or as the maintenance drug during the off-therapy vacation period of intermittent therapy. I would definitely bring it up again with the doctor. The doctor can also do a simple blood test for dihydrotestosterone (DHT), which is converted from testosterone and is far more potent than testosterone as a fuel for prostate cancer. It's apparently not uncommon for Lucrin or orchidectomy to do its work effectively only to have the adrenal glands make up enough substitute testosterone to cause trouble itself and also be converted into DHT. Finasteride will sharply reduce that conversion, and Avodart will reduce it even more sharply for most men.

I am really concerned that he is now on no drugs at all. He has got to the stage where he can't bear the thought of anymore injections,

He won't need them because the orchidectomy does the same thing - eliminates production of testosterone from the testes.

but is quite happy to take pills.
Is there something else we need to look at????
To me, adding back Casodex, if it is not causing the PSA to rise, could be wise, and I would want Avodart too. I would definitely want to be on a bisphosphonate drug along with the calcium and vitamin D.

If the PSA still goes up, there are "second line" hormonal blockade approaches that are highly effective for many men. One of them is substituting ketoconazole (with hydrocortisone in support) for the Casodex. Another is putting the patient on transdermal estrogen patches, a technique that avoids potential complications with oral estrogens like DES. The drug Leukine (but it's a self injection) has been strikingly effective for some patients. A new drug called Provenge - an immune system drug - will probably be approved in the US this year, but will be very expensive and probably unaffordable for US patients unless covered by insurance. These are some of the main options before chemotherapy, but there are other options too.

Lifestyle tactics also appear to me to be very important. You can get some leads to them in several threads, including one with the title "Nutrition & lifestyle tactics - books, resources and a quick summary", started on March 6, 2008. Unfortunately perhaps for your husband, those delicious and nutritional dairy products may not be so helpful for prostate cancer patients. I really miss cheese , but I consume almost no dairy products because of the prostate cancer. I do use a little "half and half" in coffee every few days, but that's about it.

Dr. Charles "Snuffy" Myers, a renowned medical oncologist specializing in prostate cancer with a large practice in Virginia (including an unusually big contingent from Australia for some reason) has written a very helpful book about what can be done medically and with lifestyle tactics. The title is: "Beating Prostate Cancer: Hormonal Therapy & Diet." I think it would be a wonderful source of both information and hope to you and your husband. (Dr. Myers is also a veteran of a challenging case of prostate cancer, and he appears to be cured at the ten year point, though he does not use that word.)

I hope this has helped, but please ask if you have more questions. I hope you will keep posting.

Good luck to you both in dealing with this,

Jim

Last edited by IADT3since2000; 09-27-2009 at 05:07 PM. Reason: Spelling of nanograms.

 
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Old 09-25-2009, 11:04 PM   #3
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Re: Back to urologist 29 Sept, what questions do we need to ask?

Hi IADT3since2000,

Thanks for taking the time to answer...

"I'm not clear about the unit values. In the US, it's measured in ng/dL (nanorams per deciliter), at least at my lab, and when I'm on my triple hormonal therapy it should be less than 20. The lower limit of the testosterone test at the lab my doctor uses is "<10" (meaning less than 10). "

From what I understand .7 on our scale is equal to your 20, so is imperative to get under this figure. It has been an uphill battle to get somewhere near these figures.
By 29th we should have latest testosterone figure, let's hope that it has decreased

"To me, adding back Casodex, if it is not causing the PSA to rise, could be wise, and I would want Avodart too. I would definitely want to be on a bisphosphonate drug along with the calcium and vitamin D."


Will take this onboard and discuss this with doctor.

Thanks for your help, you have given me some measure of peace of mind.
Tuesday can not come fast enough!

Dairywoman30

 
Old 09-28-2009, 05:49 AM   #4
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Re: Back to urologist 29 Sept, what questions do we need to ask?

Jim really has some great insight. I have found his posts to be very informative and useful. I am on triple blockade. I am not sure on availability but if you can get the Dr Myers book that Jim referred to it helped me a great deal. I consult with him now on my treatment. He has me getting tested for 25-dihydroxyVitamin D-3.

Apparently there may be a link but not necessarily causation between low levels and progressive prostate cancer. He recommended a Vitamin D-3 supplement along with some others including pomegranate extract which Jim referenced in a recent thread.

All the best at your appointment tomorrow.

John

 
Old 09-28-2009, 10:10 PM   #5
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Re: Back to urologist 29 Sept, what questions do we need to ask?

This is just an update of appointment today....

The idea of stopping all drugs was to see what would happen, but the doctor was willing to start again if that gave peace of mind and to add a drug called etidronate 200mg for a fortnight, plus the calcium and vit D.

Specialist still not convinced that proscar(finesteride) is the way to go as there has been no clinical trials done in NZ and that it only affects Type 1 enzymes & not the Type II.

The lab had mucked up the testosterone blood test, so everything was a calculated guess until we have new one done.
However husband much happier now and checky once again so that is a plus!

Thanks for all the good wishes and encouragment.

Ann

 
Old 09-30-2009, 07:37 AM   #6
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Re: Back to urologist 29 Sept, what questions do we need to ask?

Hi Ann,

I'll insert some thougths in green, especially about using either finasteride or Avodart. Jim


Quote:
Originally Posted by dairywoman30 View Post
This is just an update of appointment today....

The idea of stopping all drugs was to see what would happen, but the doctor was willing to start again if that gave peace of mind and to add a drug called etidronate 200mg for a fortnight, plus the calcium and vit D.

I'm not that familiar with etidronate, though I have heard of it before. I believe it is a bisphosphonate drug in the same class as the others I've mentioned. It would probably help, especially if the doctor thinks it would.

Specialist still not convinced that proscar(finesteride) is the way to go as there has been no clinical trials done in NZ and that it only affects Type 1 enzymes & not the Type II.

It's quite true that finasteride affects only Type I and not Tye II, and I too, if I had not already had great success with finasteride, would prefer the drug that takes care of both types, which is Avodart (known scientifically as dutasteride but not available in the US generically). Is the doctor willing to prescribe Avodart? If so, that would appear wise to me. If not, I can provide leads to additional research information on this class of drugs (5-alpha reductase inhibitors) if you would like. Back in 2000, I had to provide such information (there is more now) to my oncologist before he was comfortable adding the drug for me. (We learn a lot from our doctors, but they often learn from us too.)

The lab had mucked up the testosterone blood test, so everything was a calculated guess until we have new one done.

Been there myself - really frustrating!

However husband much happier now and checky once again so that is a plus!

Very glad to read that!

Thanks for all the good wishes and encouragment.

Ann

You're welcome. Hang in there and keep your spirits up!

Jim

 
Old 10-06-2009, 12:04 AM   #7
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Re: Back to urologist 29 Sept, what questions do we need to ask?

Thanks Jim for your thoughts.....

"It's quite true that finasteride affects only Type I and not Tye II, and I too, if I had not already had great success with finasteride, would prefer the drug that takes care of both types, which is Avodart (known scientifically as dutasteride but not available in the US generically). Is the doctor willing to prescribe Avodart? If so, that would appear wise to me. If not, I can provide leads to additional research information on this class of drugs (5-alpha reductase inhibitors) if you would like. Back in 2000, I had to provide such information (there is more now) to my oncologist before he was comfortable adding the drug for me. (We learn a lot from our doctors, but they often learn from us too.)"

Perhaps I might need to take you up on your offer as to where Imight get the information about Proscar.... I don't know wether Advodart is available here....
My husband will not see the urologist for another 6 months now, but will see oncologist 23rd November. Pehaps I need to be better prepared with blood tests/information etc so that we may see a way forward.
His blood has been retested PSA, testosterone, but awaiting results, has started the editronate(biphosphonate). Next few weeks will be interesting, am hoping for a positive outcome....

Have you by any chance read the paper by s. strum "Listening to the biology of Prostate Cancer"? I wondered if hubby fell into the that small group of men that had failed to get test below 20ng/dl(.69 over here) Lowest PSA he has had is 1.2....



Once again, thanks for all your encouragement,

Ann

 
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