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Cancer: Prostate Message Board

Cancer: Prostate Board Index

[COLOR="DarkGreen"]Hi Fiddlegirl,

I want to extend my own welcome to the Board, though I realize that you would much rather have never had a reason to come here. Nevertheless, I hope you find some comfort and help here. I'll add some comments in green to parts of your post. Like your dad, I too had some challenging features in my case, including initial PSA coincidentally of 113, but my Gleason score was lower and no bone mets were detected. That was back in late 1999, and I'm doing well now on a program of intermittent triple androgen deprivation therapy. I'll explain that a similar (but likely continuous, not intermittent) program might help your dad, at least for a while, though andropen deprivation therapy works best when done prior to metastases. I've learned a lot about treatment of well advanced cases, enough to be convinced there is reason to hope for your dad, but also reason for you to prepare for a decline. If his situation does get worse, there are better techniques these days for controlling pain than were available in the past.[/COLOR]

[QUOTE=Fiddlegirl;4823847]Been searching on internet for past few days for advice/research and found this forum which seems very helpful and friendly to newcomers.

Devastated to find out 2 weeks ago that my dad who is 81 (but until earlier this year had enough energy to outrun a 30 yr old previously!) has advanced prostate cancer. His initial PSA level was 113 and we have now been told his gleason score is 9 and that the cancer has spread widely throughout his bones, arms, legs, pelvis etc. He was in horrific pain when he found out the results following a biopsy. He has been put on Morphine for the pain which is helping, and has been catheterised to help with waterworks problems. He was in bed most of the time, and able to get up /be active for about 1 hour per day and was not able to eat anything. He was given some steroids which have kick started his appetite a bit which is great news.[/QUOTE]

[COLOR="darkgreen"]Drastically reducing the testosterone that fuels many prostate cancers is a common first step in such cases. The fastest reduction results from the orchiectomy operation (believe it's called orchidectomy in the UK). A new drug known as an LHRH-antagonist also results in a rapid reduction, and LHRH-agonist drugs, which have been around for many years, reduce testosterone sharply but often take a couple of weeks to take full effect. They also raise testosterone briefly (called "flare")before shutting it down, unless the rise is blocked, which should be done with drugs known as antiandrogens. Typically patients suffering from bone pain will get virtually immediate relief when the testosterone is sharply and suddenly reduced. For an elderly man, the orchiectomy might be the best course. It is also far less expensive than using drugs to shut down testosterone.[/COLOR]

[QUOTE]My mum and I can't believe his PSA & Gleason is so high, and feel this has crept up on our lovely, happy small family. I am an only child so we are all very close.[/QUOTE]

[COLOR="darkgreen"]I am so sorry for you, your mum and your dad. :( Many of us have gone through what you are now feeling and can sympathize with you.[/COLOR]

[QUOTE]He was started last week on 3 weeks on Cyprostat with 3 monthly injections from this week onwards. They have told him the hormone therapy might dampen the cancer down to give him more time.. but I have so many questions!! [/QUOTE]

[COLOR="darkgreen"]Cyprostat is in the antiandrogen class of drug. It does not shut down testosterone production, but it muscles it out of the docking sites on the prostate cancer cells that are the ports for fueling the cancer. It has the potential to work fairly well for some men whose cancer is not too aggressive, but my impression is that it will not be effective for very long against a very aggressive and well established metastatic cancer like your dad's. It is not approved for use in the US because of concerns about side effects that are considered unacceptably risky; it is approved in the UK and Europe. Instead, there are several other antiandrogen class drugs used in the US, especially bicalutamide, which was available a few years ago only as an expensive brand name drug known as Casodex. I'm wondering if bicalutamide is now available in the UK system. I'm not familiar with differences in effectiveness between bicalutamide and Cyprostat. Perhaps someone else could help here.

However, the US specialists in advanced prostate cancer whom I have been following would almost surely want either the orchiectomy or an LHRH-agonist or -antagonist drug plus either of the fairly mild but key drugs in the 5-alpha reductase inhibitor (5-ARI) class, either f i n a s t e r i d e or Avodart. While the latter drugs do not have overwhelming power on their own, they have one critical advantage: they shut down virtually all of the conversion of testosterone into a much more potent form known as dihydrotestosterone (DHT). That's important for at least two reasons. First, it means there is far less of the potent DHT to fuel the cancer. Second, it means that DHT, which is able to muscle out the antiandrogen drugs from the docking sites, thereby fueling the cancer, won't be able to do that. That means that the antiandrogen drugs will be able to block those docking sites against the less potent testosterone. The result is far less fuel being delivered to the cancer cells.

Unfortunately, this triple approach is still controversial in the US and world, with many doctors not being well informed about the 5-ARI drugs. For a number of reasons, very few studies have been published about this triple approach. I was lucky to learn about it back in 2000 from one of the pioneering physicians who developed it, and it has been at the heart of my therapy ever since. It might be possible for your dad to get on that approach.

There are a number of frequent side effects that accompany the operation or drugs that reduce testosterone and the antiandrogen drugs. However, there are also fairly effective ways of preventing or minimizing those side effects. A good brief summary is in the book "Invasion of the Prostate Snatchers" (2010) by Ralph Blum, a patient, and Dr. Mark Scholz, MD, one of the experts in triple androgen deprivation therapy (also known as triple hormonal blockade). One of the potentially most serious side effects is a reduction in mineral bone density that many of us will experience unless it is countered. Consuming calcium and quality vitamin D3 helps, but it is not often enough unless a bone density drug is used also. For many years, the bisphosphonate class of bone density drug was the only class available. Now we also have a monoclonal antibody drug that seems to be effective. The doctors I follow would probably put a metastatic patient like your dad on the intravenously delivered drug Zometa. It is very powerful, much more so than other bisphosphonate drugs. Not only does it often preserve or even restore bone density, but it also sometimes slows bone metastasis, halts it, or even reverses it! :cool: It also has an uncommon side effect that is potentially serious, known as osteonecrosis of the jaw. There are steps the patient, dentist and doctor should take to minimize that risk.

There are other treatments that some leading medical oncologists are using, but I'm not sure how well they would be covered in the UK. One is the new but very expensive drug known as Provenge. Another is the drug Leukine. Chemotherapy, perhaps in combination with these approaches, is also an option.[/COLOR]

[QUOTE]When asked about radiation treatment, we were told the oncologist wanted to wait 6 weeks before considering if radiation therapy would be used. In the USA it seems you can choose your treatment, but in the UK you are simply told, this is what you are getting. Everything seems to go so slowly, the delays from first going to GP, getting referred to hospital, getting tested, getting results etc seem so long its nuts.[/QUOTE]

[COLOR="darkgreen"]I admire the UK's system for providing broad health coverage. (My wife and I love "Doc. Martin.") On the other hand, I'm so glad I have the choice that you would like to have. I'm sorry you have to put up with this added frustration at this difficult time.[/COLOR]

[QUOTE]I can see from the past few days searching the net that there is lots of advice & info on people with early stages of PC but not much on blogs or information from people who have advanced/aggressive PC with bone mets. Does anyone know of any? I am desperately trying to find some good stories to print off to give my dad. [/QUOTE]

[COLOR="darkgreen"]The Prostate Cancer Research Institute (PCRI), a non-profit organization, makes available many publications that deal with advanced cases. An excellent book for you is "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers, MD. In addition to describing strategies for advanced cases (and lower risk cases), Dr. Myers delivers a great dose of optimism. He relates a number of cases that appeared more serious than your dad's that had good outcomes. To me, that indicates that a good outcome could happen, but the circumstances are still daunting for your dad. There are a number of other publications that deal frequently with advanced cases. One is known as "PSA Rising."[/COLOR]

[QUOTE]I am wondering:

We know its not curable, but how long might he have? (and will he have any quality of life - something which is very important to him?) Anyone we speak to say they can't put a figure on it.[/QUOTE]

[COLOR="darkgreen"]For some of us cure is not the goal. Instead, we are trying for long-term control and quality of life. I'm in that group, and so far, as I approach the twelve year point as a survivor, I'm doing well, with both the cancer under reasonable control and a good quality of life. If your dad does not get good treatment, he probably will only survive up to a few years, and his quality of life could decline fairly soon as he loses capabilities and energy. With good care, it is impossible to say. Some patients do amazingly well, as in the stories that Dr. Myers relates. Moreover, advances in prostate cancer treatment are being made constantly. In just the past year several new drugs have been added for advanced prostate cancer patients. At the turn of the year from 1999 to 2000, just after I was first diagnosed, two well respected doctors independently responded to my question with a forecast that I had about five years to live: three good years and two declining years. Here it is approaching the twelve year point, and I'm doing quite well. Many other patients with challenging cases can tell similar stories. Because of all the advances in knowledge, it's impossible to reliably forecast survival for prostate cancer patients with well advanced cases.[/COLOR]

[QUOTE]Hospital couldnt say if it had spread to other organs (they only did biopsy and bone scan), but wouldn't do further checks since they know its already in the bones. Any idea if PC often spreads further than the bones and what the symptoms might be so we can look out for them?[/QUOTE]

[COLOR="darkgreen"]Prostate cancer typically spreads to the lymph nodes and the bones. Less often it spreads to other organs and tissue, such as the liver. I'm not sure about symptoms to look for regarding these other sites.[/COLOR]

[QUOTE]If he had a benign prostate problem 7-10 years ago, should the doctors have been monitoring his PSA levels each year? His last normal score (6) was in 2008 but they hadn't checked him since then.[/QUOTE]

[COLOR="darkgreen"]There is a great difference between prostate cancer screening practices in the US versus the UK and continent. In the US, many of us are screened with a PSA and DRE every year, once we hit certain ages, but very likely at age 50 regardless of our risk circumstances. In the UK and Europe, medical associations and guideline groups are comfortable with a more relaxed approach, believing that screening every few years is adequate. I'm convinced that is not wise, but that's what they believe, and that's the way it is at this time. A gap of three years since 2008 is not surprising from a UK/European standpoint.[/COLOR]

[QUOTE]How long will it take to know if the hormone therapy is going to work?[/QUOTE]

[COLOR="darkgreen"]That drug should have begun to work almost immediately, causing his PSA to decline. A PSA test done today would almost certainly show a substantial decline in PSA.[/COLOR]

[QUOTE]Is it better to do hormone therapy until it stops working and then do radiation treatment for pain, or do them both at same time?[/QUOTE]

[COLOR="darkgreen"]I'm thinking that the hormonal therapy could well be enough to solve the pain problem, thereby avoiding the undesirable side effect impact of radiation on the blood cell production machinery in the bones. If the antiandrogen does not work, I hope the doctors will try orchiectomy or an LHRH type of drug. Actually, I hope they will be willing to try the triple androgen deprivation approach, but even in the US there is much reluctance to that approach. If the hormonal approach is not enough to stop the pain, and the pain is due to the cancer, then radiation for pain would probably be worthwhile.[/COLOR]

[QUOTE]Are there any supplements he should take? I read in an article he should be taking Vit D and Calcium, but hospital said to not bother as it wouldnt make any difference.[/QUOTE]

[COLOR="darkgreen"]The hospital's comment makes me think they do not know what they are talking about! :( It makes me concerned that they do not understand prostate bone metastases well as they relate to bisphosphonate drugs, hormonal therapy and bone density. I'm also concerned that they may be writing off your dad as just another old man with a serious disease. (That happens too often in the US too.) Again, I'm a layman - not a medical professional, but I'm sure the doctors whose advice I follow would insist your dad be on a bisphosphonate, probably Zometa, and such drugs require the patient to have an adequate intake of calcium and vitamin D (which is best if vitamin D3). There are a number of books on diet, nutrition, supplements and prostate cancer. The one I know and like best is the one by Dr. Myers that I mentioned above. (If you get it, he has changed a few opinions, based on recent research, since it was published in 2007. He now strongly favors consumption of curcumin in the Super Bio Curcumin formulation and resveratrol, the latter under a doctor's supervision.

It is possible that your dad's diet is helping to promote the cancer. Many of us love bacon and eggs, but bacon is considered by some experts to be about the worst food for prostate cancer patients, and egg yolks have an element that promotes prostate cancer. Evidence indicates that dairy foods, including cheese, increase risk for prostate cancer patients. (I really miss cheese.) Soy is apparently good for us, and I find soy substitutes, including substitutes for meat, milk and cheese, not as good as the real things but not bad either. Some men consume flaxseed oil, believing it helps their general health. Fairly strong evidence indicates that flaxseed oil is quite dangerous for prostate cancer patients. Fish oil appears to be highly desirable for us, with fish consumption also a good thing. Is your dad taking a statin drug, the kind of drug that is often used to control cholesterol? Statin drugs reduce the risk of dying from prostate cancer, especially after they have been taken for three years, and even more so after five years. Quality pomegranate juice or extract has really helped men with prostate cancer recurrences, but the evidence is mainly from two small studies, and it is not clear if it has a substantial impact on very advanced cases. Still, I believe it will prove to be helpful for advanced cases. Lycopene, which is readily available from food - especially cooked or processed tomato products, is probably good for us and free of adverse side effects (except for the rare allergy).[/COLOR]

[QUOTE]Is there anything he or we can do to extend his prognosis?[/QUOTE]

[COLOR="darkgreen"]The tactics I have mentioned would probably help, in my layman's opinion. However, the challenge may be to find a way to put them to use under the UK health care system.[/COLOR]

[QUOTE]Are there any books or websites that help people & their families deal with being told they have a terminal illness? Knowing he only has a short time left with us is horrific and both my mum & I are not sleeping at the moment.[/QUOTE]

[COLOR="darkgreen"]Do you have prostate cancer education and support groups for patients and loved ones in the UK? I suspect so. There's an organization known as US Too International in the US, a non-profit organization, and I believe it has chapters in the UK. Talking to fellow survivors and their families can be a great comfort and very informative. My own local hospital has an outstanding organization called "Life With Cancer" that offers free counseling by oncology nurses specially trained to help families. Some hospitals here have similar services, but many do not. There may be similar organizations in the UK. I'm hoping that one of our UK participants will be able to address this. A group known as prostatepointers, a non-profit organization, has a unit called Spirit that offers spiritual support for those dealing with prostate cancer (and another unit that deals with humor, which might also help). It also offers other free information services. Perhaps other participants will mention favorite resources. I found a lot of comfort and support in my church.[/COLOR]

[QUOTE]I found a really good website which catalogued stories of men with PC and what their PSA & gleason score had been and it showed their informal blogs updates as they progressed through their various treatments. I wanted to show it to my dad but now cannot find it at all - anyone recognise this & know what the name of this might have been? I think it was a worldwide one.[/QUOTE]

[COLOR="darkgreen"]Board rules are strict about mentioning websites that are not pre-approved. On the other hand, we can mention organizations. One non-profit organization you might contact is known as YANA, or You Are Not Alone.[/COLOR]

[QUTOE]Any thoughts or suggestions anyone has would be really helpful.


[COLOR="darkgreen"]I hope you get some other responses, especially responses from participants in the UK who know your health system.

Your father obviously is facing a serious challenge, but there is reason to hope. I wish you, your dad and your mum the best.

Take care,

Jim :wave: [/COLOR]

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