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Old 05-07-2009, 12:12 PM   #1
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Would greatly appreciate help - advanced prostate cancer

Hi there,

My 62 yo husband was diagnosed with prostate cancer 18 months ago (PSA 481). Had bilateral orchiectomy April 08 (PSA 18). Put on Casodex.

PSA last month was back at 412.

Because of bone scan and pain had 10 radiation treatments each to spine, shoulder area, pelvic/femur area. These will be finished on May 12.

We will be talking to oncologist on May 26 regarding chemotherapy (don't know what type) and IV for bone building.

Please tell me what I have to look forward to, i.e., what is going to happen to him physically. I know everyone asks, but I truly would appreciate knowing a guestimate as to his time to be here. I feel as if it's important for me to prepare myself and others.

God bless...and thanks.

Last edited by patriciah; 05-07-2009 at 12:15 PM.

 
Old 05-07-2009, 01:49 PM   #2
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Re: Would greatly appreciate help - advanced prostate cancer

I am sorry that you are going through this. However this board has provided a wealth of information, direction and encouragement for me. if you have not read Dr Charles Myers book beating Prostate cancer please do.

Also read Jim's post on the following thread

father diagnosed...need honest responses

There are other posts on advanced cases also.


I have found a number of suggestions within these posts and dr myers book that I had not heard before. Since I have an advanced case and Gleason 9, the information was very welcome and I have implemented a number of them in my life.

With more information on options you will be able to ask questions and discuss treatments in a manner that leads to a more informed decission. One of the realizations i came to is that I had to take a more proactive roll in learning about my own case and the options out there. My Doctors were not up on all of the latest information.

God Bless

john

 
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Old 05-07-2009, 03:23 PM   #3
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Re: Would greatly appreciate help - advanced prostate cancer

Hi Patricia,

I'm sorry you have had to join us on this board, especially after such disheartening news last month , but may you will find some hope and help here! I have a challenging case myself, though not like what you and your husband are going through. My circumstances have motivated me to prepare by learning about what you both are now facing, and I'll share that. I'll insert some thoughts in green. Jim


Quote:
Originally Posted by patriciah View Post
Hi there,

My 62 yo husband was diagnosed with prostate cancer 18 months ago (PSA 481). Had bilateral orchiectomy April 08 (PSA 18). Put on Casodex.

PSA last month was back at 412.

That would be a pretty standard approach, though I'm personally discouraged that so many doctors do not immediately put patients like your husband on Zometa, the heaviest duty bisphosphonate (with calcium and vitamin D3 supplementation in support). Don't blame your husband's doctor too much for the delay, as the medical community that treats prostate cancer is not yet fully up to speed on how to protect bone density and help prevent/minimize/stabilize bone metastasis. I see below that he will soon be getting such help.

The doctors I follow closely are highly experienced in hormonal blockade therapy, including that therapy and other therapies in advanced cases like your husband's. I strongly recommend that you find such a doctor, if possible. They really can give a patient an advantage in this battle in comparison to doctors who go by the book and stick to standard approaches.

One thing those doctors would do is to add a third tactic, most likely Avodart but possibly finasteride, to the orchiectomy and Casodex. The third drug greatly cuts down on the conversion of testosterone to DHT, and that is important as DHT is a far more potent fuel for prostate cancer. It might seem that your husband has eliminated testosterone by having the orchiectomy, but that is almost surely not the case, because the adrenal glands can also produce testosterone indirectly. Moreover, the body can sense the loss of testosterone, and the adrenals will often try to make up some of the difference. In most of us the adrenals will not produce a great deal, but in a few of us they can ramp up to 40% of normal testosterone, if memory serves me right. From what I have learned, adding Avodart would probably help your husband somewhat, but it probably would not make enough of an impact to put his cancer under control. However, other tactics are available that have achieved such miracles with numerous other very advanced patients, though far from all. More about that below.

By the way, I'm a savvy layman, but I have had no enrolled medical education.) This triple therapy, evolving from single (Lupron) then combined (added Casodex) therapy, has been the only major therapy for prostate cancer for my challenging case. I'm doing quite well on intermittent blockade, with the cancer under good control and with a good quality of life.


Because of bone scan and pain had 10 radiation treatments each to spine, shoulder area, pelvic/femur area. These will be finished on May 12.

That looks like a standard approach. I've heard that is often effective in providing pain relief.

We will be talking to oncologist on May 26 regarding chemotherapy (don't know what type) and IV for bone building.

The standard chemotherapy for prostate cancer is taxotere (docetaxel) with prednisone, I believe. In the past few years oncologists and researchers have been adding a number of drugs in combination, sometimes achieving remarkable success. One drug that really looked good for a while was resveratrol (generic Calcitriol), but the combination did not look so strong when trials were enlarged. Dr. Thomas Beer is the leader in this area. Another drug used with docetaxel is thalidomide, which is now available in an improved version known as Revlimid. Bevacizumab is another option being explored with docetaxel plus prednisone.

Because you and your husband have an extra need for your own independent expertise in prostate cancer, it's now time for you to be commissioned as a qualified PubMed researcher. PubMed is a priceless resource, but the cost is free, unless you count funding from taxpayers. We can use the site on this board because it is sponsored by the Government. Here's what you have to know to be qualified: the website is www.pubmed.gov .
You enter what you want in the search block, using connecting words that are in capital letters to separate them from text (such as, AND, OR, NOT). If you know an author or date (year) of publication, you stick [au] or [dp]after that text. You can use the Limits and other features if you want to get more sophisticated. When you get your hits, if there is an abstract (short discussion of the paper, typically with what was done, key results, and conclusions), click on the blue hypertext to view it. Sometimes there are links to free copies of the entire papers. PubMed has an online tutorial if you want to learn more.

You won't be able to understand some of the medical terminology, but often we laypeople can learn a surprising amount from the abstracts. Of course, if you have a medical background, you will be able to absorb more.

OK, here are some examples dealing with chemotherapy. You don't need the quotation marks at the front and back of the search string.

" prostate cancer AND docetaxel AND Revlimid " resulted in two hits just now.

" prostate cancer AND docetaxel AND thalidomide " resulted in 28 hits, which is understandable because thalidomide has been around a lot longer than Revlimid. (Low-dose thalidomide is one of the supportive drugs I've been on now and then to extend my off-therapy (vacation) time from Lupron and Casodex.) You will see that some of these papers discuss an unusual but not rare problem known as "osteonecrosis of the jaw." That is something you and your husband should learn about, especially

" prostate cancer AND docetaxel AND bevacizumab " resulted in 21 hits. If you want to see just studies in humans, cutting out animal and lab studies, you can do that with the Limits feature, pressing Go at the bottom of the page to activate your choices. I just selected limits for humans and for papers that had abstracts, which reduced the hits to 17. I then added a limit for clinical trials, and that reduced the hits to just two. See how it works? If you have questions about what you see, I may be able to help. One of the things I do is help recommend prostate cancer research proposals for funding, so I have some idea of the lay of the land.

" prostate cancer AND docetaxel AND calcitriol " resulted in ten hits.

But there is a promising new avenue for patients with advanced disease, using immune system therapy. That looked like a blind alley a half dozen years ago, but it is rapidly emerging as a key player. One of the drugs is leukine, and I strongly recommend you learn about that before seeing the oncologist so you can bring it up if he does not. It's a little off the beaten path, but doctors who are used to pushing the boundaries of what is done have had remarkable, even amazing success with it.

" prostate cancer AND leukine " with limits on for humans, trials, and abstracts generated 3 hits. Turning the Limits feature off expanded the list to five hits. Now, the leading researcher with leukine is Dr. Eric Small from the UCSF. Say you know that he published about leukine in 2006, and you would like to go as directly to that paper as possible without going through the general search. You can use the author ( [au] ) and date of publication ( [dp] ) tags like this:

" prostate cancer AND leukine AND small e [au] AND 2006 [dp] ", which gets you directly to the paper. That study was done in recurring patients without metastatic disease, but leukine is also working some wonders in men more like your husband.

If you swap in metastatic and put the limits back on, you get one hit from " prostate cancer AND leukine AND metastatic ". It's a 2005 German paper and did not involve prostate cancer patients, but the results are promising.

One of the physicians using leukine extensively with his very advanced patients is Dr. Charles Myers. He has written about it both in his Prostate Forum subscription newsletter and in his book "Beating Prostate Cancer: Hormonal Therapy & Diet." For example, he discusses patient "XD," whose baseline PSA was 1,026! He had a bone met and numerous lymph node mets. In addition to standard treatments including advanced hormonal blockade (triple therapy), which failed, chemotherapy and high dose Calcitriol, second line hormonal blockade, and estrogen patch hormonal therapy, he was given leukine. His PSA finally dropped to 0.04 ng/ml (Wow! ) and stayed ther on just Leukine and Avodart.

Please check the recent thread about the success of another immune system drug, Provenge. It is not approved yet, but there might be a trial your husband could enter. If it's a Phase II trial, he would definitely get the drug and not a placebo. Hopefully Provenge will be approved soon by the FDA, but "soon" is looking like the last several months of this year or early next year. Provenge plus docetaxel is looking like a real winning combination.



Please tell me what I have to look forward to, i.e., what is going to happen to him physically.

Typically, chemo is hard physically, affecting the hair, nails and having other unpleasant effects. These days nausea and vomiting can be well countered with drugs, at least that's what the experts tell us. When the chemo ceases, the patient substantially recovers.

I know everyone asks, but I truly would appreciate knowing a guestimate as to his time to be here. I feel as if it's important for me to prepare myself and others.

I know that feeling well - been there, insisted on getting a prognosis: "Five years, three good and two declining years," from two highly respected doctors, one from Johns Hopkins in Baltimore, and the other from the City of Hope in California. That was in early 2000. See my point?

You and your husband are facing a great challenge, but there truly is a substantial base for hope. No one can confidently predict how he will do in this current era of dramatic improvements in prostate cancer treatment for very advanced patients. Statistics from old studies are obsolete because the patients did not have the benefit of some key newer tactics. Zometa is just one good example of a fairly recent development.


God bless...and thanks.
Take care, God bless you, and keep your spirits up!

Jim

Last edited by IADT3since2000; 05-08-2009 at 07:09 PM. Reason: Corrected Beers to Beer.

 
Old 05-08-2009, 12:46 PM   #4
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Re: Would greatly appreciate help - advanced prostate cancer

Thank you so much for all the information. I will have to read up and be prepared for our May 26th meeting and will post a follow-up. XO

 
Old 05-08-2009, 07:23 PM   #5
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Re: Would greatly appreciate help - advanced prostate cancer

Quote:
Originally Posted by patriciah View Post
Thank you so much for all the information. I will have to read up and be prepared for our May 26th meeting and will post a follow-up. XO
I'm sure I speak for John also in saying "you're most welcome." We are here for each other.

I really like his comment that his doctors were not up with all the information. A lot of us have had that experience. It's hard to blame them too much - there's so much information out there and more coming every passing month.

I remembered I had not mentioned one other important possible option - second line hormonal therapy. If it turns out that a switch from Casodex looks best, the drug ketoconazole, which is given with hydrocortisone since it shuts down the normal production of cortisone by the adrenal glands, is often very effective. I believe the response rate is about 50%. It is a lot more powerful than Casodex, but it isn't used up front because it interacts with many drugs, complicating treatment. Another often successful second line therapy is with estrogen patches. While estrogen taken orally has some cardiac risks, the skin patch delivery system has worked much better. There are some other second line options as well.

Take care,

Jim

 
Old 05-19-2009, 07:57 PM   #6
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Re: Would greatly appreciate help - advanced prostate cancer

My husband was diagnosed in October with Advanced prostate cancer. Within 1 month we were visiting with MD Anderson in Houston. We are with Dr. John Araujo who we saw today. We go every 3 months for bone scans and CT scans. We still have our oncologist in town to administer meds.
We learned today that the bone mets have stayed the same compared to 3 months ago. We also learned that the lymph nodes had a rather large increase in growth which is why his PSA has been climbing over the past 3 months to currently 27. We are now going on triple blockade...he was on Lupron and Casodex. Now, he'll be going on Finastride (sp?) as well. They have many clinical trials going on with chemo...and we were handed one possibility today to review incase we need to move to that method if the PSA doesn't come back down.

There are many options out there...
Take care,
Linda (John's wife)

 
Old 05-21-2009, 03:09 PM   #7
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Re: Would greatly appreciate help - advanced prostate cancer

Hi Linda and John,

I'm really glad to hear that finasteride (formerly Proscar) is being added and that Casodex is not being dropped , both of which concerned me from John's previous posts. The reports I've read, the talks I've heard, and the experiences I've learned of from fellow survivors all have convinced me that full triple blockade is the best bet for really challenging cases.

I'll admit to a bias as triple blockade, also known as triple Androgen Deprivation Therapy (ADT3), is what I have been on since 2000. (Hence my screen name; the I in IADT3 is because I am on that therapy intermittently, going off the heavy duty Lupron and Casodex when my PSA gets acceptably low, currently targeting <0.01 but willing to settle (and hoping for) <0.05.

I'll insert some comments in green. Jim



Quote:
Originally Posted by Johnracer46 View Post
My husband was diagnosed in October with Advanced prostate cancer. ...
We learned today that the bone mets have stayed the same compared to 3 months ago.

Great news! It usually takes a while for changes in bone to register, but Zometa is powerful medicine, and I'm thinking you are already seeing its benefit. When I think of my own experience with more than nine years on a bisphosphonate drug (mostly Fosamax, but Boniva for the past couple of years) that has reversed the decline in bone density and brought me back to close to the healthy range despite years of being on hormonal blockade therapy, and when I learn of experiences like yours with challenging bone mets apparently at least now stabilized with Zometa, I am still awed by the wonders of these drugs! Without them, hormonal blockade would have a far more serious burden of side effects, and very challenging prostate cancer would have its way more-or-less uncontested with bone mets!

Have you been briefed on how to minimize your risk of getting the one potentially serious side effect, apparently still quite unusual, of Zometa that I know about: osteonecrosis of the jaw (ONJ)? Basically, the program involves making sure you get ample calcium and vitamin D3, determining adequacy of vitamin D by the 25-hydroxy vitamin D blood test - looking for a value between 50 and 100 with closer to 100 better) and being careful about dental work, particularly dental surgery. Also, I've heard Dr. Mark Scholz, MD, and a co-founder and leader of the Prostate Cancer Research Institute, say that in his extensive practice they do not give Zometa infusions any more frequently than every three months, and he thinks that is why they have had no problem with ONJ from Zometa. However, there is probably superior activity against bone mets with more frequent dosing, such as every three weeks or every month. It's of course best to learn what to do from a doctor rather than me, as I am a layman with no enrolled medical education to my credit, unless you count the School of Hard Knocks.


We also learned that the lymph nodes had a rather large increase in growth which is why his PSA has been climbing over the past 3 months to currently 27.

It's too bad Zometa does not work on soft tissue too, but at least we have hormonal blockade for that. Of course, blockade also helps against bone metastases (though not with bone density, which it tends to decrease somewhat for many of us).

We are now going on triple blockade...he was on Lupron and Casodex.

Are you now on 150 mg of Casodex per day? That would be three pills. I have never been on that dose - only on 50 mg or one pill daily during my "on-therapy" periods, but that's because I've never had detectable mets. The doctors I follow all like to use 150 mg of Casodex if there are detectable mets, and at least Dr. Charles "Snuffy" Myers likes to use 150 even if there are not detectable mets, I believe, and I know Dr. Robert ("Dr. Bob") Leibowitz likes to use 150 mg for all patients if their insurance and finances will cover it. Did doctor Aroujo discuss the dosage?

Now, he'll be going on Finastride (sp?) as well.

I'm glad to hear that, but I'm wondering if the doctor explained why he chose finasteride rather than Avodart? Dr. Robert Leibowitz, arguably the earliest advocates of triple hormonal blockade, has always preferred finasteride, but most of his peers among the leaders in triple hormonal blockade prefer Avodart - the other drug in the "5-alpha reductase inhibitor" class, except in men whose genetics can't take advantage of Avodart. (By the way, these doctors were all formerly fans of finasteride, but except for Dr. Leibowitz they moved pretty quickly to favoring Avodart for most of their patients when it became available. It is more expensive because it is not generic, but if finances are not an issue, it's the drug of choice as I understand it.)

I've always been on finasteride (including when it was only available under the brand name Proscar), and in combination with Avodart for a short period, and I'm sticking with it because I've done well. Still, I'm tempted to jump ship and go with Avodart. Did the doctor even bring up the possibility of a choice? If not, that would not be surprising, as our docs with good reason do not wish to overload us, especially toward the beginning of our combat with this disease.

Are you on finasteride twice a day (two times 5 mg = 10 mg per day)? For my first two cycles I was on only 5 mg, but I suspect 10 mg is better, and I switched when I finally realized that that was the dose Drs. Strum and Scholz used routinely, after discussing the switch with my oncologist.

Did either of the doctors measure dihydrotestosterone (DHT)? The finasteride should drive that potent fuel for prostate cancer way down, preventing most of its conversion from testosterone. Mine is now below 3, which is the lower limit of the test and is considered fine.


They have many clinical trials going on with chemo...and we were handed one possibility today to review incase we need to move to that method if the PSA doesn't come back down.

Here's another lead to a drug option: first testing for the fasting level of prolactin, and, if it is significant, inhibiting it with a drug like bromocriptine or dostinex. The Primer mentions prolactin briefly on page 137 in Table 11C as the third class of therapy drugs "Prolactin inhibitors." The Primer's index also notes a couple other places where prolactin appears (in the Forms section). Dr. Strum, the medical co-author of the Primer, likes to use a prolactin inhibitor drug at times as the fourth element of hormonal blockade, so you would have ADT4 instead of ADT3. He does this because prolactin increases the ability of the cancer cell's docks for incoming fuels (the "androgen receptors" are the docks) to work with small levels of testosterone.

The drugs mentioned by the Primer for prolactin are Dostinex and Bromocriptine (both brand names as of 2002 - my edition of the Primer). These drugs seem much more part of the game when patients have significant metastases. You can get a flavor of the research by going to PubMed (www.pubmed.gov) and searching for (without the quotation marks): " prostate cancer AND prolactin AND (bromocriptine OR dostinex) ", which should give you at least four hits if you use the Limits feature and call for abstracts, humans, males, and clinical trials. (Without limits, you'll probably see more hits than you want to even think about dealing with. At least that means there is a heck of lot of research going on about prolactin and prostate cancer. )

These drugs are not in the usual full blockade regimen because they are not so easy to manage. According to the Primer p. 137, this class of prolactin inhibiting drug "Requires careful dose titration; nausea common, hypotension [meaning low blood pressure] possible." Still, when you look at the research, it's tempting to go for that benefit for cases involving many metastases.

To me, considering adding a prolactin inhibitor would come before a clinical trial or chemo, but chemo or a trial would be reasonable ways to go too.

Dr. Myers would probably want to try second line hormonal blockade, such as with ketoconazole, or try leukine, before going to chemo or a trial. He might also go for that prolactin inhibitor. He devoted much of his newsletter published in August 2000 to Prolactin (Volume 5, #8), and he followed up on a heart valve concern related to Dostinex in his February 2007 issue (Volume 9, #12), basically saying that those on a low dose of the drug probably had a low risk. In that issue he mentions other drugs that are not associated with any heart valve leak (bromocriptine, ropinirole, pramipexole, and lisuride.) Back copies of his newsletter are available.


There are many options out there...

Amen! It's nice to have options, but having so many is confusing.

Take care,
Linda (John's wife)
Keep your spirits up,

Jim

 
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