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Old 09-27-2012, 11:12 AM   #1
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New diagnosis, age 48 no symptoms

Two weeks ago we thought my husband was perfectly healthy. He woke up with groin pain and we went to the ER, where they found swollen lymph nodes. They biopsied the lymph nodes. He has prostate cancer that's spread to nearby lymph nodes and a small spot on the hip bone. What a shock at 48. No symptoms at all. He had his first lupron shot yesterday and here we stand.

The doctor said Lupron can be effective "months or even years." Is this the only type of treatment we should consider at this point? I believe the doctor is a good one because he manages the clinical trials for a consortium of 13 health organizations in Ohio. Still we've had just one opinion.


Any general advice about anything at all would be welcome. I just left a message asking about a Gleason score since reading up a bit. We didn't get that. What else should we be doing/asking?

It's nice to have found people to talk to as we're feeling a little lost.

Thanks...

Last edited by Mia99; 10-08-2012 at 07:52 AM. Reason: corrections.

 
Old 09-27-2012, 04:10 PM   #2
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Re: New diagnosis, age 48 no symptoms

Sorry that you have to seek help on this board. My experience with prostate cancer does not equip me to provide any help. I would just like to say this board seems to be very very helpful to patients with a wide variety of needs. I bet you get some kind words of wisdom from special people on this board...like Jim...without giving you hope built on flawed information. They will be there in the weeks/months ahead when you have more questions/concerns. Dale

 
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Old 09-27-2012, 04:15 PM   #3
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Re: New diagnosis, age 48 no symptoms

Quote:
Originally Posted by dale2035 View Post
Sorry that you have to seek help on this board. My experience with prostate cancer does not equip me to provide any help. I would just like to say this board seems to be very very helpful to patients with a wide variety of needs. I bet you get some kind words of wisdom from special people on this board...like Jim...without giving you hope built on flawed information. They will be there in the weeks/months ahead when you have more questions/concerns. Dale
two more quick things: Your husband has been dealt a tough hand of cards, but has been ...apparently...lucky or smart in picking 1) a superb doctor...and 2) a superb spouse. That has to help the prognosis a little.

 
Old 09-28-2012, 04:24 AM   #4
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Re: New diagnosis, age 48 no symptoms

Thank you for the words of encouragement and warm welcome. It means a lot.

 
Old 09-28-2012, 09:20 AM   #5
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Re: New diagnosis, age 48 no symptoms

I have been reading threads and other information online because that's what you're supposed to do before asking for help in a forum. In this case it's just a roller coaster ride into a dark and scary tunnel so I'm going to stop. I can't tell which advice should apply to us. I did sign us up for a new health club membership today at least. And I kept myself from buying up supplements like pomegranate or shaking cayenne pepper on everything in sight... hoping that perhaps someone can narrow the field and help us choose what makes the most sense. We are scheduling a second opinion at a well respected clinic, and the Dr. said calcium and vitamin D, so that's something. Although he also said avoid alcohol which seems a little counter-intuitive right at the moment.

That last comment was meant to be a joke. Almost.

I'm going to go off and do something normal for awhile, k?

 
Old 09-28-2012, 11:12 AM   #6
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Re: New diagnosis, age 48 no symptoms

What a shock this must be to both of you. I found that psych counseling was very valuable to me at the time of diagnosis. I also joined a PC support group that I still attend. On top of the possible depression, anxiety and grieving over the diagnosis, your husband will experience mood changes from the hormone therapy. It's a lot to deal with.

As far as timing, there is wide variance. A lot depends on how well he responds to initial ADT. It is not unusual nowadays for men to keep the disease in check for 10-15 yrs with Lupron and the like and even longer with the amazing recent breakthroughs. In a recent study that followed men for up to 17 years who were hormone responsive and had distant metastases, the median all cause survival among those on continuous ADT was about 6 years, but almost a third survived more than 10 years. About half of those men in that study died of something other than prostate cancer -- most men diagnosed with PC are older and have more virulent disease. Those who didn't have extensive metastases at the time of diagnosis lived a quarter longer, on the average. And, keep in mind that the men in that study were treated with the medical technology of 17 years ago. A lot has changed.

Zometa and Xgeva not only prevent bone density loss from ADT, and prevent "skeletal-related events" due to metastases, they actually slow down or prevent bone metastases. Alpharadin, which destroys bone mets, will most likely be available next year. Cabozantanib, has demonstrated the ability to clear all bone mets in some men in as little as 12 weeks, and may also get FDA approval next year.

Most of the time when new drugs for PC are approved, they are approved for men who have already become castrate-resistant (Lupron is a form of chemical castration). There are many clinical trials for using them earlier. However, his oncologist may prescribe any of them "off-label." These new drugs are prohibitively expensive and I don't know if your insurance company will pay for off-label use. One more headache to cope with!

In the vaccine category, Provenge is approved for PC, and Yervoy, approved for melanoma, will soon be approved for PC as well. There are several other vaccines and immune boosters in clinical trials.

In the hormone category, Zytiga and Xtandi have been approved in the last two years and more are on the way. These continue to work even after "castrate resistance" has set in.

In the chemo category, Taxotere is approved for first round and Jevtana after that.

What is remarkable is that all of these new drugs have become available in the last two or three years. There are many times as many in clinical trials. The rate at which they're emerging is dizzying, and doctors are still experimenting with the timing of their use and how to best combine them. None is a cure, but they all have the ability to extend life.

You may be interested in possibly discussing with your doctor early use of some of these and possibly of some others. I wrote about some of the others in the following link:
http://www.healthboards.com/boards/cancer-prostate/916538-recovery-hormonal-therapy-my-latest-results.html

- Allen

 
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Old 09-29-2012, 11:24 AM   #7
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Re: New diagnosis, age 48 no symptoms

Thank you for all the helpful / hopeful info. I'm starting a doc of tips and this is going into it. I've also received some advice from a friend whose husband is struggling with stage 4 esophageal cancer and they have been following a holistic regimen related to nutrition that might have application here. I'd be interested advice or experience about this in general, and of course PC specifically. Keep in mind this is *in addition to* and NOT instead of regular medicine. And we've just started Lupron with nothing else planned until necessary. She wrote:

The kitchen is your frontline pharmacy. No sugars. Only complex carbs. Eat lots of brassicas (like broccoli, cauliflower, brussels sprouts, cabbage). Eat red beets. Fresh sprouts are packed with nutrition.

Eat high quality protein, and only high quality protein.

Do an elimination diet to see if you are lactose-intolerant. If so, no dairy, as it will be a source of inflammation.. If you are OK with dairy, it is worth the extra expense to buy regional organic, pasture-fed, BGH and anitbiotic free

Check for gluten intolerance. GMO wheat, which is now in everything, including cereal,
is highly inflammnatory (from a recent post in Huffington Post) For anything that has a grain as an ingredient, opt for anything labeled "non GMO" when you can. Gluten intolerance is also a source of inflammation. at the cellular level.

Body pH should be slightly basic (not remembering the # but this is another way to create the best cellular environment for healthy processes to occur.

Turmeric is apparently fantastic at tumor growth prevention. So is aspirin.

Google functional medicine, a recent cross-discipline that studies micro-cellular functions to whole body systems. You can learn a lot by going on their sites and looking for one with an impeccable background in medicine. Ask what they know about treatments by Dr. Milz in Germany using phosphytidylcholine (Spelling???) to repair cell membranes, and correct the traffic flow in and out of cells.

I have a book for you to read, from a medical doctor who treated his own brain cancer, but can't remember the name or title. (I'll update when she gives this to me)

*And this is chemo info that doesn't apply to us yet but might help someone else now*
Nutrition during chemo: high quality protein:
1. A premier whey product for shakes, smoothies, and rich chocolate drinks. Buy in a health food aisle, not the drugstore weight-builder's junk.
2. Greek yogurt has concentrated protein. A source of higher-quality eggs is worth looking for--someone who has chickens in their own backyard, etc.
3. Bone marrow, cooked a la Joy of Cooking, is a rich source of nutrients. So is calves' liver.
Juicing: a hand-held blender wand can whip up nutrition-packed smoothies and drinks in a snap. Frozen bananas and other fruits, with yogurt, nutritional yeast, cinnamon....
Keep your eye out for juices like Odwalla's Green Machine and V-8 VFusion drinks, packed with vegetables and fruits.

-----------------
So that was the advice. My friend is an educated person and an excellent researcher so it's probably worth looking at. (Her husband was told he had 6 months to live last July and his last test was cancer free. Maybe that's an important detail, huh?) Please let me know if you've got experience with any of it or have practical advice.

Again, thank you.

 
Old 09-29-2012, 05:11 PM   #8
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Re: New diagnosis, age 48 no symptoms

In general, heart healthy is prostate healthy. Here's a good fairly recent book (things are changing so fast, it's hard for books to keep up) I can recommend, "Promoting Wellness Beyond Hormone Therapy - Options for prostate cancer patients" by Dr. Mark Moyad. It has a chapter on diet and supplements.

I agree with Akai that Metformin may be worth including in the cocktail for advanced disease. You are right that it seems to reduce incidence, but it also may reduce disease progression. In this lab study of rats given human prostate cancer, metformin combined with Casodex induced apoptosis (programmed cell death) in cancer cells and reduced the rate of proliferation:
http://www.ncbi.nlm.nih.gov/pubmed/22614062
And in this study they found that cancer mortality was reduced by 15% among men with type 2 diabetes who used Metformin, but they had 20% higher than average mortality if they didn't use Metformin:
http://www.ncbi.nlm.nih.gov/pubmed/22266734

As far as the dietary interventions your friend recommends, just remember to keep things in moderation. Dairy has been implicated in more aggressive PC, but it's unclear whether the cause of that is increased butterfat, increased calcium, milk proteins or whether it's just an artifact of those kinds of epidemiological studies. Almost all of the dietary studies are epidemiological, retrospective cohort studies or lab studies -- useful for generating hypotheses but nothing definitive.

Broccoli looks good so far, but sulforophane, the chemical that may be beneficial in it, is poorly absorbed. An enzyme that allows for better absorption is destroyed by heating, so eating even a little raw broccoli or brocolli sprouts together with the cooked may be a good idea:
http://www.ncbi.nlm.nih.gov/pubmed/21240766

Curcumin looks great on paper, but fails miserably in real life for two reasons. First, it is poorly absorbed through the gut. Some preparations include "bioperine" derived from black pepper, which increases absorption. However, then it runs into the second obstacle -- the liver. The liver eliminates it almost totally on the first pass from the digestive tract and it is excreted before it can get to the prostate cells where it might do some good. Scientists have modified curcumin into dimethoxycurcumin and "ASC-J9" which do make it through the digestive obstacle course. They are in early clinical trials now.

The other supplements I feel really good about are soy isoflavones, gamma-tocotrienol (but NOT vitamin E nor multiple vitamins). Maybe aspirin. I'm agnostic about statins and Celebrex. I'm sure that eating lots of brightly colored fruits and vegetables, and cutting back on animal and trans fats will help all of us live longer.

- Allen

 
Old 09-29-2012, 05:16 PM   #9
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Re: New diagnosis, age 48 no symptoms

Thank you SO much.

 
Old 10-02-2012, 08:25 AM   #10
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Re: New diagnosis, age 48 no symptoms

egg yolks are a great oil/water emulsifier, which is why egg yolks are used to make mayonnaise. It's part of every cell membrane, cancerous and non-cancerous.

Last edited by Administrator; 10-02-2012 at 09:28 AM.

 
Old 10-02-2012, 09:45 AM   #11
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Re: New diagnosis, age 48 no symptoms

I'm not sure what you mean by "damaged membranes" in cancer, but the stuff is harmless. I'm sure a spoonful of lecithin will improve fat digestion too.

Illness makes us feel out of control. In an attempt to regain the feeling of control we may grasp at straws. The internet is a great source of information but also of disinformation. I choose to stick with information from peer-reviewed journals, because I believe them to be more reliable. Prostate cancer is one of the most heavily researched types of cancer, exceeded only by breast cancer. Researchers are especially keen on finding simple dietary interventions that might prove useful, and often try to draw conclusions from epidemiological studies of populations and retrospective studies of cohorts put together for some other purpose, because they are convenient and cheap to do. (It's a quick and easy way to get published.) Sometimes they observe effects on isolated cells in a laboratory. Often the conclusions of those studies don't pan out on more rigorous testing -- like Vitamin E, Selenium and lycopene. Rigorous testing - and by that I mean placebo (or comparative) controlled prospective studies on large enough sample sizes to draw statistically significant conclusions -- are expensive and rare.

Th US National Institute of Health maintains a huge database of abstracts of articles in peer-reviewed journals that meet their minimum quality standard. If you want to know what has been published on the subject of say "phosphatidylcholine" and "prostate cancer" and "cell membranes," just enter those words in the search bar (use quotes around multiword phrases). The website is pubmed.gov . You'll want to keep your searches narrow and focussed as possible (i.e., more terms) because the database is huge.

- Allen

 
Old 10-02-2012, 10:18 AM   #12
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Re: New diagnosis, age 48 no symptoms

All good points and info, thank you.

 
Old 10-08-2012, 08:26 AM   #13
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Re: New diagnosis, age 48 no symptoms

We will get a 2nd opinion at Cleveland Clinic on Wed 10/10. I am not sure any more how good our local doctor is. When asked about nutrition he said high protein, low fat, but sounded a bit like it didn't matter that much. There was no talk of anything but lupron until it stops working, and he does not recommend intermittent therapy at all for us.

I have lots of questions for the Cleveland doctor but not sure they are all the right ones. Maybe Allen or someone with similar experience can help me get questions in order...? These are bullet points from notes I've taken on here.
  • Is intermittent therapy a possibility (stage 4, no symptoms, 48 years old)?
  • Does the way this presented indicate anything (swollen lymph node caused groin pain over just 24 hrs; no pain since biopsy)?
  • What to do now along w/lupron to extend its effectiveness?
  • Agree no surgery or radiation/chemo?
  • Diet and supplements (e.g., soy isoflavones, gamma-tocotrienol, cayenne pepper, aspirin or ibuprofen, pomegranate juice, cayenne pepper, broccoli
  • What to avoid? (Red meat (arachidonic acid helps fuel PC cells?) alcohol, carbs, dairy?)
  • Use of modified curcumin (dimethoxycurcumin and "ASC-J9")
  • Metformin with statins
  • Leukine / Provenge
  • With lupron: Bicalutamide and “5-alpha reductase inhibitors" (finasteride available as a generic, and dutasteride)
  • Zometa
  • Alpharadin and Cabozantanib
  • Clinical trials including Docetaxel (Taxotere) and vaccines
  • And I've also got a copy of Allen's cocktail post to ask about.
    They did not get a gleason score. Is that important? Any other numbers/info to get or track?
    How often will they / should they check PSA?

Any advice about making the most of this visit will be appreciated. They'll have all the records. I'm also curious what you guys think about intermittent therapy in our situation. It would be a nice thing to look forward to. Right now my husband is thinking the worst and believes there is nothing good in his future.

Last edited by Mia99; 10-08-2012 at 08:30 AM. Reason: added to list.

 
Old 10-08-2012, 11:06 AM   #14
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Re: New diagnosis, age 48 no symptoms

A recent comparative study among men with metastases who responded to hormone therapy found that continuous hormone therapy extended life longer than intermittent therapy.

Which hormones he takes may depend on his response as measured by his PSA. The goal is to drive his PSA down to undetectable levels and keep it there. Lupron sends a signal to the pituitary that increases the production of testosterone in the testes. The increase in testosterone then causes the pituitary to completely stop production of testosterone by the testes (this is called negative feedback). Because with Lupron testosterone goes way up (called a flare or surge) before it goes down, Casodex (bicalutamide) - an anti-androgen - may be given for about a week before Lupron therapy begins to prevent the testosterone from getting into the cancer cells and fueling their growth. A newer drug, called Firmagon (degarelix), directly stops the production of testosterone without causing it to surge first.

Some doctors routinely keep patients on Casodex for a longer time, but the benefit is unclear. It is known that eventually the cancer cells may adapt by feeding on the Casodex. However, if Lupron by itself doesn't get the PSA down, many doctors will add Casodex too (called Combined Androgen Blockade).

The benefit of the 5ARi (Avodart or Proscar) is unclear too. It prevents any testosterone that is still there from getting converted into DHT, which is a many times more powerful androgen that fuels cancer growth. If testosterone is held down to castrate levels by the other hormone therapies, and PSA is undetectable already, it may not be necessary. However, it is fairly inexpensive and has low side effects, so some doctors will add it to the mix.

Then there are the two new forms of hormone therapy Zytiga and Xtandi. Both keep working after the cancer cell androgen receptors become immune to Lupron therapy (castrate resistance). More are in clinical trials.

His doctor may want to suggest Taxotere now. I know someone who got it at the start and it kept his PSA down for several years even without hormone therapy.

It is important to monitor PSA frequently, at least monthly at first, to know that the therapy is working. There are "ultrasensitive" PSA tests now, so that even a small rise is detectable. Testosterone and DHT must be monitored as well. There are a number of other blood tests (e.g., liver enzymes) that his doctor will ask for too.

Surgery and radiation to the prostate are not useful after metastases are detected in the bone. Radiation is typically palliative if used on bone mets because most mets are too small to show up on bone scans.

Cleveland Clinic is superb. I hope you will find a great oncologist there and the kind of holistic approach you are looking for.

- Allen

 
Old 10-12-2012, 12:10 PM   #15
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Re: New diagnosis, age 48 no symptoms

Allen, apologies for not thanking you sooner for your help with the 2nd opinion conversation. It did help me get ready. The diagnosis and treatment were both confirmed in Cleveland. There is a clinical trial for Taxotere that my husband needs to consider. The study is in place to determine if there is benefit in receiving Taxotere at the very beginning of hormone treatment as opposed to later, after it's no longer working. I would have signed him right up but he is thinking it over. So the three hurdles are 1. my husband needs to decide to do it, 2. He appears to qualify but will need to pass a physical screening process to be sure he fits the profile in every way, and 3. It's a random 50-50 drawing to get Taxotere or not. That last one kind of sucks.

Any advice about how to convince my husband to apply for the trial? They say that side effects of this particular chemo are fairly well tolerated but any experience there might help. As well as any downside I'm not considering.

The doctor kind of poo-poo'd the specific nutrition advice I've seen. If it was that easy, no one would have cancer, he said. But he stressed exercise and balanced nutrition aimed at keeping weight down. It hasn't put me off the idea but it will make it more difficult to convince my husband about it. I've seen some books suggested here about nutrition and lifestyle but the one on its way to me is Anticancer: a new way of life. Any experience with that plan, by chance?

There was a positive take-away from the Cleveland doctor. He said a few years ago my husband's condition would mean an average 2-3 years survival rate. However, this is an exciting time to manage this health issue because of the rapid pace of development. Just as I've read here on this board. He encouraged a realistic but cautiously optimistic point of view. I'm taking that as hope that we can stay ahead of the curve of these new developments and ride the wave for a long time.

Thanks for helping and listening.

 
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