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Old 06-25-2011, 05:52 AM   #31
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Re: Are urologists too optimistic?

Hi Chadhas,

It's good to have you back. I'll put some comments in green.


[QUOTE=Chadhas;4785224]Hello,

Its been long since I was here. We have been busy and worried about dad'd health and I would really appreciate any suggestions.
Dad's PSA has been rising and has reached to 1.9 in June 2011 from 0.43 in Mar 2011, while the testosterone level remains at 0.1.
Is he hormone refactory?

That's possible, but it is also possible that the cancer is working around the triple blockade (orchiectomy for testicular testosterone, bicalutamide to block the androgen receptor/etc., and Avodart to block almost all of the conversion of any remaining testosterone to DHT/etc.). In the US, the doctors I follow would use a dose of 150 mg of bicalutamide (or possibly even more) for someone who had existing bone metastasis, or with such a high initial PSA. It gets into a numbers game, with the numbers of bad guys trying to fuel the cancer being blocked with good guys from the bicalutamide, but maybe just not enough of them due to the dose.

Therefore, in my layman's view, it seems that increasing the dose of bicalutamide to 150 mg may well help. On the other hand, the doctor is rightly thinking that the cancer may have mutated so that it can now use the bicalutamide as fuel! If so, an increase in dose could boost the cancer. Again as a layman, with no enrolled medical education, I'm thinking it could be worth trying a boost in the drug but monitoring frequently, say in a week, two weeks and a month to see what happens to the PSA. If it goes down, then the 50 mg dose was probably too low. If it goes up, then the cancer has mutated and the bicalutamide should be stopped. The doctors who are experts in hormonal therapy may have other approaches to sorting this out.


Quote:
The doctor has suggested starting Ketoconazole and stopping Bicalutamide but says he is not sure if it will work on dad.

Jim,
I remember you telling me about Ketoconazole, but do you think it will work for dad. Or in general, does it work for most patients?
That too is a reasonable approach, and it has a strong chance of working as, correctly and diligently used, ketoconazole works on a majority of patients. I haven't refreshed my memory from notes, but I believe it must be taken every eight hours around-the-clock. Also, it interacts with many other drugs, so that interaction must be analyzed and managed. That can be done, but it takes some thought and effort. The experts in hormonal blockade are enthusiastic about ketoconazole. For instance, Dr. Myers describes its action in his book "Beating Prostate Cancer: Hormonal Therapy & Diet," as well as alternative approaches.

Quote:
-> The low testosterone level worries me. Does that mean the cancer cells are taking food from something else? What could it be?

Really worried!

Thanks
Chadhas
While on hormonal blockade, the cancer cells are starved for fuel and adjust by becoming extremely sensitive to any androgen or other fuel. More androgen receptors on the cancer cells are developed, and they are more receptive, as I recall. Yes, there are other fuels.

Fighting challenging cancer is like a military campaign. You find effective tactics, but the enemy adjusts and tries to work around those tactics. That means you have to adjust your tactics. Fortunately, in 2011, we have learned a lot about how to adjust, and we have quite a few more weapons against the cancer (including knowledge of what works) than we had in the past decade.

Take care and keep your spirits up,

Jim

 
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Old 06-26-2011, 12:23 AM   #32
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Re: Are urologists too optimistic?

Thanks a lot as always Jim.

The doctor says the recent rise in PSA is because of "biochemical recurrence" where something other than testosterone within the body is giving fuel to the cells (as testosterone is still at a very low level). And calutide is just a dummy drug going inside now.
The course of action would be to stop calutide for a while, a month that is, and see if PSA goes down. After that he will decide what has to be done. But ketoconazole is surely next in line of treatment.

Hoping and praying for some good results.
Good luck to all!

Regards
Chadhas

 
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Old 07-25-2011, 11:28 PM   #33
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Re: Are urologists too optimistic?

Hello,

We have Dad'd latest results. PSA has gone from 1.9 to 3.3 and testosterone from 0.1 to 0.12. Stopping Bicalutamide has not helped in these 4 weeks but the doctor wants to wait for another month before going for ketoconazole.

-> What I have read in PCRI and some other websites is that after stopping Bicalutamide it takes around 8 weeks to show effect. (Flutamide takes lesser time) Is that true for majority of cases? Also, with these 8 weeks should the PSA rise as Dad's has?

-> Doctor says ketoconazole will be given with another drug, which he says will be flutamide. Is ketoconazole + flutamide the right approach?

-> He aslo mentioned that after ketoconazole, third line treatment will be given to Dad which is HON1. Now I have no idea about this, never heard the name, can't find anything about it on internet. Would be great if someone could throw some light on it.

Thanks for all your support

Regards
Chadhas

 
Old 07-26-2011, 05:12 AM   #34
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Re: Are urologists too optimistic?

Chadhas

The progressive PSA you report in your father’s status is indicative of refractory. The treatment is failing and adjustments are required or a change on drugs should be initiated.
I cannot foresee any difference in trying to prolong the status of a lower PSA (expecting for a withdrawing response) and that of going straight through a more aggressive approach.
Ketoconazole has been the protocol of choice in HRPC patients in the past decade but it affects the liver and it is prohibitive for certain medicines taken for other illnesses, which you should consider (medicines interaction).

Refractory cancer is assumed to feed on very low “quantities” of testosterone or on its own produced testosterone (intratumoral). The newer drug that has proven to be beneficial in combating such intratumoral activity is Abiraterone acetate that besides of being highly effective it has lesser side effects than chemo type of drugs.
You can read about details of this drug using a net search engine.
If that is not available in India yet, you could get the medication in England and send it over to your dad.
I believe the oncologist knows about this drug if not from medical reports then from the media. The “mail” news just published about the wonders of the drug.

You are a dad’s girl and it is wonderful seeing your dedication in his care.

Wishing you both the best.

Baptista

 
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Old 08-01-2011, 01:29 AM   #35
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Re: Are urologists too optimistic?

Thanks a lot Baptista.

Abiraterone is not available in India yet as my sister found out. It will be by end of this year. However, if need be I can always try and get it from here.

As we await dad's next PSA, we just got worried thinking if there is a possibilty that PC is spreading to his organs? Although when he was diagnosed last year, it was spread in his bones and none of the organs. Incase it starts spreading, bones will be affected first? I am asking this since we might have his bone test done sometime in near future, should we also get an MRI done?
Also, what are the symptoms that we should look out for in case it is spreading (in organs)?

Thanks for all the support as always

Regards
Chadhas

 
Old 08-01-2011, 02:57 AM   #36
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Re: Are urologists too optimistic?

Chadhas

I believe that cancer doesn’t “choose” where to spread. Cells travel through the blood system and settle in places propitious for its survival.
Bone seems to be the traditional place for PCa; however, close organs to the prostate, such as bladder and urethra are also places where Pca have been found. In advanced cases we read about liver and lungs spread. Cancer in organs tend to be noticed by failure of these organs itself or from their vital signs.
MRI is one of the tests to verify for metastasis but only highly experts on reading image studies can actually distinguish lesions related to cancer.

I hope your dad gets a good response from the PSA test, but you should be ready for the next phase on the treatment not declaring “truce” to the bandit.

Take care
Baptista

 
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Old 11-27-2011, 01:11 PM   #37
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Re: Are urologists too optimistic?

Hello,

Its been a while since I have posted on this forum.

Dad's PSA continued to rise even after stopping Bicalutamide, thats when he was put on Ketoconazole. Since then, our family has been anxious, happy and worried. Anxious as we were waiting for Dad's PSA result after starting Ketoconazole, which lead to a drop from 7.5 to 6.5 in a month (Oct 2011). This is what made us all happy. Now the month 2 result (Nov 2011) has got us worried, Dad's PSA has gone up to 8. Just when we though Keto was working, we get these results. Confused and worried, we are getting his PSA done again tomorrow from another lab. Does PSA fluctuate like this while on Keto or is it something to worry about?

Thanks & Regards
Bhavna

 
Old 11-28-2011, 02:21 PM   #38
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Re: Are urologists too optimistic?

Chadhas

I am sorry to know about the higher PSA. I hope keto works and stops the rising.
It may be the right time to change drugs to abiraterone.

I would recommend your dad to get second opinions from oncologists specialized in targeted medications.

The best.
Baptista

Last edited by Baptista; 11-28-2011 at 02:26 PM.

 
Old 11-28-2011, 02:27 PM   #39
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Re: Are urologists too optimistic?

Quote:
Originally Posted by Baptista View Post
Chadhas

I am sorry to know about the higher PSA. I hope keto works and stops the rising.
It may be the right timing to change for abiraterone.
I would recommend you to get second opinions from oncologists specialized in targeted medications.

The best.
Baptista
Thanks a lot Baptista.

Abiraterone is not available in India. It has not even arrived here in UK yet. In US as well it is prescription only as I have read. Can it be purchased from one of the pharmacies (in US) with prescription from oncologists in India?

Regards
Bhavna

 
Old 11-28-2011, 02:55 PM   #40
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Re: Are urologists too optimistic?

The brand name for abiraterone is Zytiga. I believe that you can get it with a prescription from India. You can inquire at the pharmaceutical Janssen Biotech (of Johnson& Johnson).They have a UK distributer.
Just search the net by typing the drug’s name to get directions.

Batista

 
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Old 11-29-2011, 07:03 PM   #41
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Re: Are urologists too optimistic?

Hi Bhavna,

I'm responding to your recent post.

It's so difficult when the approaches we use do not produce the results we need! (And vice versa, of course.) It's wise to get that second PSA check of course.

Here's another possibility, even if the second PSA confirms the first one, indicating an increase. While it is possible the Ketoconazole may no longer be working, it is also possible that it will work if administered in just the right way. I've heard two expert medical oncologists who make extensive use of it for prostate cancer patients both emphasize that it is vital that it be administered in a certain way. If it is taken a different way, apparently it will often be ineffective.

I am looking at the handout of key slides from a presentation by Dr. Mark Scholz on Ketoconazole at the National Conference on Prostate Cancer 2005 in Washington, DC. Here's the content of his slide: "Ketoconazole: Administration Guidelines":
  • Acid pH in the stomach needed for absorption into the blood
    -Take Ketoconazole with 1000 mg Vit C
    -Aim to take Ketoconazole on empty stomach since food buffers the acid.
  • Antacids decrease absorption [of Ketoconazole]
    -Avoid Zantac, Tagamet, Pepcid, Axid, Prilosec, Prevacid, Nexium, Protonix, Carafate.

As I understand it as a layman, the vitamin C is just to make the stomach acid and that other methods will work as well.

I've also heard that taking it every eight hours is important. In another slide, "Preventing Side Effects," Dr. Scholz mentions the eight hour schedule, and he advises starting with 1/2 the dose, then increasing it after seven days if there is no toxicity ("increase dose from 200mg every 8 hours to 400 mg every 8 hours"). Please bear in mind that this information was from 2005 in a handout, and sound professional medical advice in 2011 to a specific patient could be different. In the slide Dr. Scholz also advises that blood be monitored to ensure that Ketoconazole levels are above 1.0, with low levels for DHEA, Androstendione, and testosterone. He advises that liver tests be done monthly. He notes that stomach upset can be counteracted by eating food, but that in that situation blood levels are vital; I'm thinking that's because food can neutralize the needed acid environment, his concern in the earlier slide. He points out that hydrocortisone, 20 mg twice per day with food, is important while on Ketoconazole because the drug blocks normal production of necessary hydrocortisone. He recommends resistance training in a gym to maintain strength and muscle mass.

I believe Dr. Myers also presented on Ketoconazole, probably at the 2009 conference, but I cannot locate my file at the moment. I do remember him stating emphatically that Tylenol must not be taken with Ketoconazole. It also interacts with many other drugs; that interaction can be managed in most cases, apparently, but it needs active, competent attention.

I've heard more than one doctor express doubt that Ketoconazole was very effective, but I got the feeling these doctors just did not know that the drug had to be administered the right way (including monitoring and appropriate adjustment). It seems that many doctors do not know the ins and outs of Ketoconazole.

Dr. Eric Small of UCSF is the major researcher on Keto for prostate cancer, and he may have published about his own clinical experience with it. You would probably also find something useful published by the Prostate Cancer Research Institute, especially in its set of papers or in a back issue of its PCRI Insights newsletter.

As a final thought, is your dad still on a drug to hold down testosterone, like Lupron or Zoladex? That would be important, I think. Is he taking anything to prevent conversion of any remaining testosterone to DHT (finasteride or Avodart)?

Take care,

Jim

Last edited by IADT3since2000; 11-29-2011 at 07:08 PM. Reason: Added final thought right after posting.

 
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Old 12-01-2011, 01:34 PM   #42
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Re: Are urologists too optimistic?

Hi Jim,

Nice to hear from you after so long. Hope you are keeping well.

Dad is actually following the proper protocol for taking keto, i.e, taking it on empty stomach, having 8 hour difference between each dose. And he is taking it with Coke instead of orange juice as his doctor suggested.

About the dosage, Dr. Steven Tucker has suggested the dose to be increased from 200mg to 400mg. However, his doctor thinks that Dad's body is not strong enough for HDK and wants to wait for another month. We have very little knowledge and really don't know if we should try to convince his doctor to increase the dose?

Dad is still on Avodart but not on any LHRH agonist. Is it advisable to start once given the history of rise in PSA while on Bicalutamide?

Regards
Bhavna

 
Old 12-01-2011, 06:30 PM   #43
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Re: Are urologists too optimistic?

It's nice to hear from you too.

I have no clue on the dosage change.

Regarding restarting the LHRH agonist, I believe there is no connection with androgen receptor mutations that can mean bicalutamide becomes fuel for the cancer rather than an anti-cancer agent. My impression is that the LHRH agonist drug is typically continued when the antiandrogen is stopped or switched.

I hope your dad has a good result with the Ketoconazole.

Take care,

Jim

 
Old 03-13-2012, 05:43 AM   #44
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Re: Are urologists too optimistic?

Hello,

Dad's PSA continued to rise on low-dose Keto so we convinced the doc to move him to high-dose Keto that resulted in drop of PSA from around 14 to 11. But then dad had severe side effects from HDK and the accompanying Prednisone and HDK itself like edema in legs, dizziness and many more. Hence doctor decided to stop HDK immediately and wait for the fluid to be out of his body before switching to Chemo or Honvan. This again resulted in PSA rise to 14. Now, after 1.5 month of stopping HDK dad's PSA has dropped from 14 to 2.5 without being on any medication (second line hormone) other that dutasteride. We are delighted yet confused. To us this is unusual, is it simply God's miracle or medications have got something to do with this. I would like to have your thoughts:

-> what could be the possible cause of this?
-> what should be our next course of action?

Regards
Bhavna

 
Old 03-13-2012, 09:14 AM   #45
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Re: Are urologists too optimistic?

Bhavna

I am glad to read about the drop in PSA. I hope it continues low and you and your family celebrate this relief.
In hormone refractory cases, there is a phenomenon known as “antiandrogen withdrawal syndrome”. This is a situation when patients experience a decrease in the PSA, after stopping the medication.

It is believed that in time the cancer adapts to survive in low levels of testosterone or even adapts to survive feeding on the hormonal drugs. This is typical with antiandrogens because they got a similar structure to that of the testosterone, but this is the first time I read on such possibility with second-line drugs.
You may ascertain this fact with a chronology of past testosterone test.

Unfortunately this period is short lived and the PSA starts rising again. Usually doctors switch to chemotherapy.

I hope that in fact his system managed to kill the bandit or that God has intervened on your dad’s behalves.

Thanks for continuously sharing your father’s story.

The Best to you all.
Baptista

 
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