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Old 04-19-2011, 02:13 AM   #1
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Father Diagnosed - What Now?

Hi all,

Went to the urologist with my dad yesterday where it was confirmed that he had PC. While we pretty much thought that was going to be the case it still comes as a bit of a shock.

I only wish I had come to these forums before I went to the appointment as I would have a lot more questions for the specialist so I could get a better picture of what is going on.

Anyway my father is 71 years old and has lung problems as well as heart problems, aside from that he's in pretty good shape , but seriously....the doctor said because of his age and other problems curing the PC is out of the question and because PC is a slow growing cancer that it's would be best just to manage it.

Now my father had a PSA test at the start of the year and he was a 54, he had another one a few days before the appointment and it was 50 so the doctor said it would be a good idea to either remove the testicles or opt for the hormone treatment. We decided to opt for the hormone injection and he was given an injection into his abdomen there and then.

Prior to reading these forums I wasn't aware of a Gleason rating/scale or even if they use that here in NZ so I don't know where he is on that. He did have a bone scan a week prior to the appointment and as far as the specialist could tell it looked like the cancer hadn't spread although he did say he wasn't a radiologist so he couldn't be sure.

Now the urologist said that he should lose some weight and start taking vitamin D and calcium as the hormones could make his bones weaker.

One question that I didn't ask which I regret is "how long does he have left"
I really don't know what the expected time frame of someone that is diagnosed with PC, any insights here?

Also what supplements should I start buying for my father to help him along, he's currently on a few medications for his heart and lungs although I have found a herbal supplement which has really helped his lung problems but I would like to know what else I could buy to help things as with everyone else here who has loved ones with the terrible disease I would love to have him for as long as possible....

Thanks all for your help and replies..

 
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Old 04-19-2011, 11:28 AM   #2
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Re: Father Diagnosed - What Now?

Hello Terry,

Sorry to hear of your father's affliction. I hope you can provide more information so someone more knowledgeable than I can perhaps answer some of your questions. It would be good to know his Gleason score, the results of his PSA tests, and the results of any other tests. It is also is unclear the nature of his other ailments and their severity. What kind of hormonal treatment is he receiving? With more information perhaps someone can at least point you in a helpful direction.

Best wishes,
Tom

 
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Old 04-20-2011, 11:09 AM   #3
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Re: Father Diagnosed - What Now?

Hi Terry,

I would like to extend my own welcome to the Board to you and your dad. I'll add some comments in green after excerpts from your post below. I'ver read through Gleason9's response and his good questions to you.


Quote:
Originally Posted by terryd23 View Post
Hi all,

Went to the urologist with my dad yesterday where it was confirmed that he had PC. While we pretty much thought that was going to be the case it still comes as a bit of a shock.
That's the way it comes for almost all of us, even if we expect it. However, if you or a loved one has to have cancer, prostate cancer - for the vast majority of us and likely your dad - has a far more favorable course and survival rate than the other major cancers.

Quote:
I only wish I had come to these forums before I went to the appointment as I would have a lot more questions for the specialist so I could get a better picture of what is going on.

That would be ideal, but prostate cancer is a complex disease, including many different conditions of patients and associated therapy options. It would be hard to care enough before a diagnosis to be able to attend to, absorb, and remember the key points. However, now is the time to learn! I'm convinced that empowered patients and family have much better outcomes, not the least of which is a lot more confidence and hope.

Quote:
Anyway my father is 71 years old and has lung problems as well as heart problems, aside from that he's in pretty good shape , but seriously....the doctor said because of his age and other problems curing the PC is out of the question and because PC is a slow growing cancer that it's would be best just to manage it.
That makes excellent sense. While it is possible to go for a cure, it is often not worthwhile even if cure is achieved because of the price an older patient with other substantial health concerns pays in terms of complications from therapy and side effects. Moreover, managing the cancer is not a second rate option; in fact, with much improved hormonal therapy that is available today, many of us will succeed in controlling the cancer for many, many years, perhaps until the end of our lives, while having a burden from side effects that is lighter than the burden from other therapies that involve an attempt to cure. I have been dealing with a challenging case now in my twelfth year since diagnosis, and, thanks to being able to go on intermittent hormonal therapy, at the moment my side effects are minimal and not noticeable.

Quote:
Now my father had a PSA test at the start of the year and he was a 54, he had another one a few days before the appointment and it was 50 so the doctor said it would be a good idea to either remove the testicles or opt for the hormone treatment. We decided to opt for the hormone injection and he was given an injection into his abdomen there and then.
Those PSA readings are high, as you probably know by now, but they are far below the readings for many patients a couple decades ago just after PSA testing was introduced; those patients often had metastatic disease at the outset. Metastatic disease, not counting local spread in the neighborhood of the prostate, would be unusual for your father's PSA levels. (My own initial PSA at age 56 was 113.6, and my scans - bone, CT and ProstaScint - were all negative.)

It is surprising that your father's second PSA was lower than the first, especially as his PSA was high at the start. That's a good sign regarding the aggressiveness of the cancer, but it makes me wonder if he has some infection that is driving up the PSA level. Did the doctor talk about infection at all?


Quote:
Prior to reading these forums I wasn't aware of a Gleason rating/scale or even if they use that here in NZ so I don't know where he is on that.
Gleason scoring is now standard throughout the world, so you should phone or visit to get a copy of the pathology report from the biopsy. In fact, it is very wise to have the pathology slides reviewed by an expert who specializes in prostate cancer. You might not have such an expert in NZ or Australia, but the slides could be shipped to the US.

Quote:
He did have a bone scan a week prior to the appointment and as far as the specialist could tell it looked like the cancer hadn't spread although he did say he wasn't a radiologist so he couldn't be sure.
Is the scan going to be read by a radiologist? It would be a good idea to ensure that it is; however, the odds of the scan showing cancer are very, very low, even at your dad's PSA level. That's partly because the bone scan will only indicate possible cancer when the cancer involves about 10% of bone or more. That said, it is still a good sign when the scan does not show cancer. Also, while it takes a radiologist to get the best assurance of a sound reading, chances are good that the doctor would have spotted possible cancer; it's a good sign, of course, that he did not.

Quote:
Now the urologist said that he should lose some weight and start taking vitamin D and calcium as the hormones could make his bones weaker.
That advice is exactly right. Getting the appropriate nutrition/diet/supplements and exercise is important to giving us good shots at better outcomes with fewer and milder side effects. It would be especially important for someone with lung and heart issues. Perhaps the most serious common side effect of hormonal therapy is a decrease in bone density. The docs I follow, who are medical oncologists - the specialty that knows drugs the best, would want him to have a bone mineral densiy scan (done with a quantitative CT scan preferably, or a DEXA scan), and they would probably want him to be on a bisphosphonate drug along with calcium and a sound vitamin D3 supplement (many vitamin D supplements are inferior). They would certainly want his vitamin D monitored with a "25-hydroxy vitamin D" blood test. After eleven years of intermittent triple hormonal blockade, my bone density returned to normal (during the third "on" cycle of the drugs) with the aid of Fosamax for most of the years, then Boniva, and calcium and vitamin D supplements.

There are three books I think are superb for prostate cancer patients, but especially for patients considering or on hormonal therapy. Here they are:

"Beating Prostate Cancer: Hormonal Therapy and Diet," about 2006, Dr. Charles "Snuffy" Myers, MD

"Invasion of the Prostate Snatchers," 2010, Ralph Blum and Dr. Mark Scholz, MD (especially expert in dealing with side effects)


"A Primer on Prostate Cancer - The Empowered Patient's Guide," 2nd ed 2005, Dr. Stephen B. Strum, MD, and Donna Pogliano

I believe your father is probably on Zoladex now, or the equivalent generic, based on the shot into the abdomen. That group of drugs is known as the "LHRH-agonist class." It's possible that a milder drug, or milder combination, might be a better solution. It's also possible that adding generic bicalutamide as well as Avodart (dutasteride) or finasteride would be wise.


Quote:
One question that I didn't ask which I regret is "how long does he have left"
I really don't know what the expected time frame of someone that is diagnosed with PC, any insights here?
That is actually hard to answer in detail, but most of us will be a lot more interested in the big picture, and, for prostate cancer, the big picture is highly encouraging! The US has good care for prostate cancer patients based on a foundation of fairly widespread screening to provide early detection for most of us. Using US statistics, virtually 100% of low-risk and intermediate-risk prostate cancer patients are alive at the ten year point! Okay, so your dad appears to be a high-risk patient due to the PSA, though its not out of the question that most of that is due to an infection. Well, 95% of us high-risk guys are also alive at the ten year point! Moreover, prostate technology is improving at a fast rate, and just in the past couple of years we have had several new drugs become available, with more following on their heels in the approval pipeline.

Quote:
Also what supplements should I start buying for my father to help him along, he's currently on a few medications for his heart and lungs although I have found a herbal supplement which has really helped his lung problems but I would like to know what else I could buy to help things as with everyone else here who has loved ones with the terrible disease I would love to have him for as long as possible....

Thanks all for your help and replies..
You already mentioned vitamin D and calcium. There are many good brands of calcium, but not so with vitamin D. Based on an expert doctor's recommendation, which he based on results in his clinic, the brand from Life Extension Foundation is sound. I have had excellent results with that band.

Quality pomegranate juice (8 oz. daily to avoid excess sugar), or a quality brand of extract capsule have been proven to help many patients. (POM Wonderful and Life Extension Foundation are two well-tested brands of capsules.)

Curcumin capsules, including agents to ensure absorption (a huge problem with curcumin) look helpful to us.

Lycopene in the diet, usually from cooked or processed tomatoes, looks helpful, though the evidence for this and other items below is not quite as strong as we would like.

Cutting out red meat and pork, but increasing fish and poultry, look wise. (Reduces arachidonic acid and saturated fat.) Several thousand IU of fish oil (not cod liver oil!) appears to help for prostate cancer and goes a long way toward reducing risk of sudden instant death from heart attack.

Drinking green tea (with a few drops of lemon juice to preserve potency) is easy to do and appears to help.

Selenium, 200 mcg daily - yeast based), and high-gamma type vitamin E (200 IU daily) appear to be helpful to some of us, depending on our genes.

In general, a Mediterranean diet appears best. Moreover, that is the only diet that has been tested in large clinical trials.

Exercise should include both aerobic exercise and strength exercise. Of course, balance and flexibiliy are also important, as is stress reduction.

Please keep in mind that I am repeating what I have read, researched and heard, but I am a fellow survivor with no enrolled medical education. The book "Beating ...", above, is especially excellent on diet, nutrition and supplements.

Good luck to you and your dad, and take care,

Jim

 
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Old 04-21-2011, 01:56 AM   #4
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Re: Father Diagnosed - What Now?

Thank you Jim for your comprehensive reply, it contained basically everything I wanted to know.

We are heading back in 3 months for his next hormone shot and I will make sure to ask more informed questions this time.

It's great to hear that you are also doing well with your treatment and you are clearly a stand up guy for helping out on these forums....

No doubt I will be back with more questions later on!

Thanks,
Terry

 
Old 04-21-2011, 12:17 PM   #5
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Re: Father Diagnosed - What Now?

Hi Terry,

You're welcome! I'm glad I could help.

Take care,

Jim

 
Old 07-19-2011, 02:10 AM   #6
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Re: Father Diagnosed - What Now?

Hi guys,

Just an update. Father went back today for his hormone injection today and he got a PSA reading of 4 which is great. He's feeling well and the results of his bone scan were negative so it hasn't spread anywhere which is great!

He's taking most of the supplements that were recommended on this board so again I appreciate the wisdom that you guys have shared.

Good health to you all!

 
Old 07-19-2011, 12:04 PM   #7
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Re: Father Diagnosed - What Now?

Hi again terry,

I'm glad to see that nice decline in your dad's PSA! I'll add a few thoughts in green to your post of today.


Quote:
Originally Posted by terryd23 View Post
Hi guys,

Just an update. Father went back today for his hormone injection today and he got a PSA reading of 4 which is great.
That's a very nice decline from where he started with a PSA around 50. My own PSA also dropped sharply in the first few months, going from 113.6, with a flare to 125 measured seven days later after Lupron on December 20, to 15.4 on February 24, 2.9 on May 12, and so on, dropping about 1/3 per month, until it started leveling off at about .6. I was really happy with that, but then I learned that it was important to get it much lower, to less than 0.05 if possible. I was on two drugs at that time, Lupron (your dad is probably getting the equivalent of Zoladex, which appears to be equally effective), and Casodex, now available under its generic name (bicalutamide).

I also learned that taking a third drug in the 5-alpha reductase inhibitor class, Proscar, which is now available generically as finasteride, greatly improved the impact of hormonal therapy according to some pioneering doctors whose practices were devoted exclusively to prostate cancer. Shortly after starting Proscar in September, my PSA resumed its downward plunge, and I eventually achieved a PSA of less than 0.01! I have become convinced that many patients need more than two drugs to get to where they need to be to hold off this disease. I am even more convinced that we need more than one drug. An extensive study of hormonal therapy in Japan suggested strongly that one drug works fine for about the first four years, but after that the blockade no longer works and there is a lot of death among those men treated with just one hormonal therapy drug (or orchiectomy alone). The Japanese researchers also looked at combined blockade with two drugs (or with orchiectomy plus an antiandrogen drug like Casodex), finding that those on the double approach did far better. I strongly recommend that your dad try to get on the triple approach, or at least the combined two drug approach.


Quote:
He's feeling well and the results of his bone scan were negative so it hasn't spread anywhere which is great!
It's of course a good sign that the scan technology was not able to detect spread to the bones!

Quote:
He's taking most of the supplements that were recommended on this board so again I appreciate the wisdom that you guys have shared.
It's great that he is taking the calcium and vitamin D3, but I'm also convinced that those of us on hormonal blockade, especially when we are older and live far from the equator, need to be on a bisphosphonate drug. Since your dad has no detectable bone metastases, it could probably be one of the milder drugs, such as alendronate, the generic name for Fosamax, or a more convenient, perhaps somewhat more effective version sold in the States as Boniva. There are other good choices, but the key is to be on one of the bisphosphonate drugs. This is important because the absence of testosterone due to the hormonal blockade drug that's injected will lead to decreased bone density for many of us; that can lead to bone fractures, which can seriously compromise our quality of life and even threaten our lives. Fortunately, the decrease in bone density can be very effectively countered with bisphosphonate drugs and associated calcium and vitamin D3. If your dad's doctor is investing extra effort to keep up with this special area of urologic oncology, he will probably understand the need. However, the fact that you haven't mentioned use of a bisphosphonate leads me to think that the doctor is not aware of the need. Many doctors treating prostate cancer still do not recognize this serious threat; that's especially true if they are urologists rather than medical oncologists. It was true of the team I first relied on - two fine urologists. They were probably excellent surgeons, but they were clearly not so versed in the ins and outs of drugs for treating prostate cancer, especially the subtleties of protecting a decrease in bone density.

Quote:
Good health to you all!
Congratulations to you and your dad for his fine response to the drugs. Yes indeed - good health to us all!

Take care,

Jim

 
Old 07-19-2011, 03:10 PM   #8
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Re: Father Diagnosed - What Now?

Hi once again Terry on this Tuesday (or Wednesday going by your calendar and clock),

I've just finished studying a new report about use of ADT for mostly older men having brachytherapy who also had a history of heart trouble. The results are sobering, showing a much higher overall death rate for those on ADT who had heart trouble compared to those who did not get ADT who had heart trouble. While the vast majority of the men on ADT did well even if they did have heart trouble, the difference in outcomes was pretty clear, enough to serve as a real caution flag. The less favorable picture applied across all three risk levels - low, intermediate and high. You can go to www.pubmed.gov (a site we can use on this board because it is Government sponsored) and find the study by searching for (without the quotation marks) " nguyen pl [au] AND ennis rd [au] AND influence of androgen deprivation therapy on all-cause mortality ".

The doctors I follow who are expert in ADT all advise using countermeasures to help us have a much better chance of avoiding cardiovascular trouble. One key tactic is diet, with a Mediterranean diet being a prominent option. Another important diet feature involves consuming fish frequently, and/or supplementing with fish oil capsules. (I eat several pieces of herring daily at lunch, often have fish for dinner, and take 3,600 mg of fish oil daily.) Fish or fish oil also is associated with a sharply lower risk of death from prostate cancer. Many of us also take a statin drug. Not only do those drugs help with cholesterol, but research has shown that death from prostate cancer is much lower for those on statin drugs. I believe there probably is an increased cardiovascular health risk for those of us on ADT, but I am convinced that risk can be greatly lowered with countermeasures. I believe that my own cardio health is better than it was before I was diagnosed with PC because of the countermeasures I have taken.

Take care,

Jim

 
Old 07-19-2011, 11:24 PM   #9
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Re: Father Diagnosed - What Now?

Jim - Thanks for the link. Information on the details of treatments' SF are vital when choosing a countermeasure. I wonder if is there a book addressing the matrix of problematic effects, in single or combined therapies. Ex; RP+RT+ADT.

 
Old 07-20-2011, 12:00 PM   #10
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Re: Father Diagnosed - What Now?

Hi Baptista,

Regarding your post #9, I do not know of a book that does that. There is a lot of research on side effects and complications of combinations of surgery and radiation, but a lot of the presentation is about adding effects and complications rather than an unfavorable synergy. Urinary trouble is one area where the synergy is well addressed.

One of the problems in laying this out is that technology keeps changing. Another issue is whether countermeasures have been well used.

That's the way I see it.

Take care,

Jim

 
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Old 01-13-2012, 01:37 AM   #11
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Re: Father Diagnosed - What Now?

Hi Guys,

Just another update, father feeling well and he had his 3 monthly visit and injection yesterday. PSA reading was at 3.4 which is good. Hopefully it will come down even more but at least it's slowly heading in the right direction and he feels good which is important.

He is still taking the supplements that you guys recommended.

Just an update for those who maybe going through a similar situation.

Thanks guys!

 
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Old 01-13-2012, 06:55 PM   #12
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Re: Father Diagnosed - What Now?

Hi again Terry,

It's good to see you posting again with an update!

That drop from 4 to 3.4 is in the right direction of course (and encouraging after that start at 54). The doctors I follow closely would probably try to get the PSA lower with the additon of bicalutamide pills (generic and much less expensive version of Casodex) and either one Avodart, or two finasteride pills. Neither is likely to add much in the way of additional side effects beyond what he is experiencing with the injection.

They would also be sure to monitor both testosterone and DHT to make sure the medications were working right for your dad. If his testosterone was not below 20, they would find out why not; it should be that low if the injection is working right for him. Sometimes there are problems with preparing the drug or delivering it, and sometimes a patient's system clears the drug much more quickly than the average patient clears it, which can create a gap in coverage. They would also want to see the DHT low, with the goal of seeing it below 5. If those values were not achieved, they would make changes to see if they could be reached.

Have your dad's testosterone and DHT levels been tested? If not, he needs to insist that that be done. This is actually a very important matter and are simple blood tests - just additional vials of blood collected at the same time blood is drawn for the PSA test. All this is based on my understanding of what I've learned as a layman without medical credentials, but it's what I've heard again and again from doctors who use a lot of hormonal therapy in their large practices that are dedicated to prostate cancer patients.

Has he had a "bone mineral density" scan? That's also very important for someone on hormonal therapy involving the injected drugs. Men need testosterone to maintain good bone density, and without it, as a result of hormonal therapy, density decreases for many of us. For a man of 71 or 72, the qCT (Quantitative CT) bone density scan is the one that seems best to me as a layman, based on what I've read and heard. The book "A Primer on Prostate Cancer" (Strum and Pogliano) has a good discussion why the qCT is better than the usual DEXA scan for many of us. Most of us on hormonal therapy need to do something to protect density while on blockade. For a long time the mainstay drugs have been bisphosphonates, which range from fairly mild (Fosamax, Boniva, Actonel) to strong (such as Zometa). Now there is a new drug from the monoclonal antibody class. One expert doctor now prefers to have his patients on transdermal estrogen patches to protect density (and help directly against the cancer) instead of a bisphosphonate. If a patient is on a bisphosphonate, it's important that he takes calcium and vitamin D3 supplements.

I hope this helps.

Congratulations to your dad in doing well at this point.

Take care,

Jim

 
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