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Joining the club - recently diagnosed with metastasized prostate cancer (bones).

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Posted 12/5/2011 4:26 PM (GMT 0)
In the last couple of months I had more urination problems than usual (had this for many years) and I had a checkup where the DRE, ultrasound and urine was fine but my PSA was 260. Followed appt with urologist, another DRE and second PSA sample one day later, now the PSA was 470!

Got sent to do CAT scan, Biopsy, Bone scan (in that order).
The Cat scan came back clean (more or less), the biopsy came back with positive identification in all 12 cores (Gleason 3-4).
Bone scan revealed that it had spread to the bones (most of spine, and right shoulder blade).

Both my wife and I where in shock when we heard about the bone scan and started to panic.
I wanted the hormone shot immediately but decided to wait until we talked to the oncologist.

In the mean time my wife got a referral to alternative clinics in addition which we called.
We have always preferred to treat using homeopathy and alternative methods when possible and we started to look into this possibility.
We read enormous amounts of information including Suzanne Somers book Knockout (still not completed it yet) and started to change my diet drastically in the process.

At this point I have started working with a holistic clinic in NY and am holding off the hormone treatment for now while examining the effects of the holistic treatment:
- Drastic diet change
- Eliminating toxins in my environment (purified water, will remove amalgam fillings, etc)
- Lots of food supplements
- Infusions of vitamin C (60G), Vitamin b17, DMSO 3 times / week
- Daily exercise

So far so good, I have not received any new PSA readings yet (I will measure once / month). I feel stronger and believe I am on a good path for now.
Posted 12/5/2011 5:01 PM (GMT 0)
Sorry about your condition.

I have read "Knockout" and other books also.

I would recommend you work primarily with urologists and oncologists and  radiologists since your condition is significant. My opinion is that this is optimal.

The alternative treatment is controversial, especially for a significant prostate cancer. I would do the alternative stuff secondarily. I would not recommend you to work soley with alternative treatment.

Good luck.

 

Posted 12/5/2011 5:16 PM (GMT 0)
Bengan

Welcome to our family.

The treatment path you are gong down is indeed controversial, also seems like so much of the conventional PCa treatments are Twilight Zone stuff.

It is your choice which path to go down and I wish you success. Please do keep us up to date on your progress.

Bud
Posted 12/5/2011 5:38 PM (GMT 0)
Thank you Raddad,

I do not reject the hormone therapy, just waiting for now.

I know most people are not aware of the holistic options and that in fact it seems as you say twilight zone material for many.
I realize that most of you here will look at this with suspicion. I'm not here to ague or convince anyone. I appreciate your support!
I'm joining to share experiences and to learn from all of you and if there is anything I experience that is helpful to someone out there that would be great.
I have learned quite a bit however in case you have questions, I'd be happy to try and answer.
Posted 12/5/2011 5:40 PM (GMT 0)
You might benefit by reading Dr. Patrick Walsh's book "Guide to surviving prostate cancer" The last few chapters pertain to your situation..A good, healthy diet will make ANYONE feel better and live longer but it won't have much effect on prostate cancer.. Your urologist has done all he can do..You need to have a long talk with a Medical Oncologist...There are about 100 of them nationwide that specialize only in prostate cancer and many of them take the holistic approach but they all use hormone treatment in one form or another to do the heavy lifting...

Best of luck to you...
Posted 12/5/2011 5:56 PM (GMT 0)
Didn't Steve Jobs try some holistic, alternative remedies for his pancreatic cancer?

Just asking.
Posted 12/5/2011 6:03 PM (GMT 0)
Welcome to HW.

As has been stated , you do have a serious problem here. Usually a newly diagnosed patient has some time. I would say in your case, days can make a big difference. Once the PC attacks your spine, no amount of holistic or conventional treatment will bring it back to normal. You can arrest it , not cure it.

In my opinion, you should hit this thing fast and hard. HT is probably your main choice, perhaps even mixed with some chemo.

Perhaps the holistic life can minimize the effects of the HT.

Best of luck. Please keep us informed of your progress.
Posted 12/5/2011 6:05 PM (GMT 0)
Bengan, you should also read Dr Snuffy Myers book "Hormone Therapy and Diet. He promotes hormone therapy for advanced PCa supplimented by diet, suppliments, exersize and stress reduction. BB
Posted 12/5/2011 6:13 PM (GMT 0)
Thanks for pointing me to the book.

One BIG difference between holistic and conventional medicine is that conventional medicine looks at what is visible (in this case the tumor) and then goes after that. In holistic treatment the whole person is treated because there is a reason (or several) that the cancer started in the first place (like fungus on cream cheese, it will come back even if you chop it off). Therefore in conventional medicine we use a pill or an operation that will yank that tumor out or hormone treatment that will affect the PSA. This works perfectly if you break a limb or are in a car crash where you need immediate attention to save your life but for chronic conditions like cancer I feel I need a more wide approach.

The holistic approach changes the environment so that the cancer does not have any more capacity to continue and strengthens the body to deal with the cancer cells which it is supposed to do (and does all the time) anyway.

So it is not a matter of a "diet" or a specific pill or activity that is used but rather every aspect of your body's function is examined and propped up.
There is tremendous success in holistic treatments of cancer including prostate cancer. There does appear to be quite a bit of polarization however between the two worlds. That is the conventional practitioners seem fairly oblivious to anything holistic or they'll treat it as a "sure you can play around with that stuff if it makes you feel better" type of thing.

There is a vast world of doctors (most started as MDs or oncologists) who treat people successfully (not less successfully than conventional) and with much less side-effects (only positive side effects - more alert, more function, etc) than conventional medicine
Posted 12/5/2011 6:26 PM (GMT 0)
Bengan -

Interesting post and I applaud you for your seemingly strong conviction and attitude. I too am on a holistic treatment plan here in NY (probably with the very same supplements you were referring too!!), but I must say i intend to supplement it with Ht and other traditional means if the holistic approach does not slow my doubling time. I'm 7 months into the holistic approach and there has been no impact yet on doubling time, but I'm in great shape and feel great.

I'm not mets yet and I wonder if you did HT and slowed the sucker down a little it might not give the holistic approach some more time to work. In any event, godspeed to you
Posted 12/5/2011 6:49 PM (GMT 0)
Thank you for posting Keeping Faith. I appreciate hearing that you too are doing holistic treatment. The prescribed plan for my (by the holistic doctor - who is an MD BTW) is to go for 3 months and then possibly introduce ht so I might very well end up there if there is no improvement.

I also feel fine for the most part while adjusting to my new diet and supplements (there are a ton!) so my stomach is a bit nervous.

I am experiencing what feels like muscle pain in various parts in my body especially in my upper right arm but also in my right leg. The pains feels like inflammations (which I have always been susceptible to) but I do not know if they are related to the PC.

Have anyone here experienced this type of symptom in conjunction with PC?

Certainly my urination symptoms are pretty bad (usually need to go about once an hour, three four times per night)
Posted 12/5/2011 7:08 PM (GMT 0)
Bengen:

So sorry to read about your current situation. Usually, we do try and give as much support and encouragement as possible and we try not to criticize others' choice of treatment. Occassionally we get into pretty good "discussions" in terms of when to do certain treatments and what doctors to see, etc.

However, I hope you are not fiddling while Rome burns. I hate to upset you, but there is a reason these are called alternative and not standard treatment. As someone else said, you don't want to lose too many days here eschewing the standard of care in your situation.

I would suggest you consider cheking your PSA on a monthly basis.

Anyway, good luck to you. There have been reports that a lot of these treatments are very helpful, but I know of no research suggesting that this should be your only treatment at this stage.

Mel

Posted 12/5/2011 7:11 PM (GMT 0)
Bengan

I'm being seen at Columbia, where the holistic urologists (Yes indeed they are MDs) work with the oncologists. I see both every visit.

I've counted 18 pills/day, green tea - and a glass of Pinot noir!. Plus diet (no meats, only soy milk, only whole wheat pastas, no oils or fried foods, and bottled spring water) and lots of exercise.

Only downer is so far I'm still doubling under 3 months, but I've lost 23 lbs and last blood pressure test the pretty nurse called my arms cannons!!!

hey I take what i can get
Posted 12/5/2011 7:30 PM (GMT 0)

Sorry to hear about your dx but glad you found this site and the support it offers. You have already been given some sound advice from "survivors" of this beast. My condition is similar to yours and I would like to offer my 2 cents concerning my treatment and how this has affected my life.

My first symptoms were pain in my legs and back, mostly at night,I had lost 30 lbs in about 6 weeks. I went to see my doctor and they did my bloodwork, My PSA was 980. I was referred to a urologist and was set up for a bone scan and biopsy. Both were bad news, biopsy was positive in all 12 cores and the bone scan showed mets in my legs, pelvis, spine, ribs, arms and skull. It was suggested to me either HT or orchiectomy, which I chose the orchiectomy.

Within 30 days my PSA dropped to 1, and 90 days later it was not detectable and has remained there since. I am now approaching 2 years since my surgery and my life is almost normal. As many have done I have changed my diet and my lifestyle. Although I realize the sacrifices this has placed on myself and my family I am alive today and I thank God for each and every minute.

May you have success in your choices and keep all other options open

Posted 12/5/2011 7:33 PM (GMT 0)
Bengan, Welcome

I fully understand the holistic approach. But I never like the word Alternative. The better word is complimentary. And thus the better way is two or more approaches that complement one another to get the best of both options. And I don't think it advisable to do just the alternative instead of being treated by doctors as well when things get really serious.

I come from a family full of doctors, surgeons, nurses etc. all of whom have had to deal with (major) healthl problems in their own lives. They always did it with a combination of surgery or medication and lifestyle changes as they felt that any one on its own was simply not enough.

Many guys are Gleason 6 with no mets when they come to HW and thus have plenty of time to make decsions. I would however caution against too much delay, as with some situations, perhaps including yours, there is a limited window in which conventional treatments will be efficatious.

Oh and watch out for unrepresentative increases in PSA levels when PSA tests are done after a DRE.

Alf
Posted 12/5/2011 7:35 PM (GMT 0)
Prostate cancer is a process of cell de-differentiation. Once it has become metastatic, it is usually because the prostate cells have reverted to a form of stem cell -- a stem cell with important gene sequences obliterated, making it unable to shut off growth, and telling it to grow uncontrollably.

Whatever treatment you choose has to address this issue. Treating what caused the cancer in the first place won't turn these stem cells off. They are on their own, convinced of their immortality. They have defeated your body's normal defense mechanisms. Unless the treatments can kill the cells or deprive them of some vital nutrient or turn off functionality, they will just keep on growing.

For many years I have used alternative treatments such as you mention. But when I got prostate cancer, I had to look very hard at what these approaches promised. To me, they promise much, but there are no medical studies to show that they have the kind of drastic effect you need to stop the cancer. As others say, it's great as supplemental treatment, but to stop these cells, you would be best to go for treatments that have been shown in studies to have effect.

Reading the literature about metastatic and aggressive prostate cancer, I can see that many new treatments are on the horizon to specifically attack the growth mechanisms at the molecular level. My goal, at least, is to try to keep the cancer at bay while these new techniques are refined, tested and released. Even now there are some treatments that offer hope in advanced cases. But the first thing is to try to bring the cancer under control. Hormone therapy is a great first step.

I wish you the best with this difficult disease. We all know how agonizing the decisions can be.

Nellie
Posted 12/5/2011 8:43 PM (GMT 0)
I wish I had confidence in your approach, and I hope your strategy works for you, but when I came to the line in your original post that said you were reading Suzanne Somers' book, I had to ask myself if you are serious.

Can someone please tell me what medical credentials Suzanne Somers possesses?  I enjoyed her work in Three's Company, but I was unaware of any medical expertise (other than selling the Thighmaster.)

I'm not trying to be flippant.  I seriously want to see EVERY man who is affected by this disease get effective treatment for it and hopefully overcome it.  Prostate cancer is a vicious and unrelenting adversary.

I say attack this disease with every weapon in your arsenal, but especially with treatments that have been proven effective in serious clinical research.  To me, a  truly "holistic" approach is just that:  throwing everything at it, including traditional and to whatever extent you're comfortable with, alternative treatments (assuming they don't hinder the effectiveness of the proven medications).

 

Posted 12/5/2011 8:45 PM (GMT 0)
Thank you so much for your replies and support. Lots of food for thought.

Just to complete the picture has anyone here actually gone to a holistic clinic and gotten a program?

I have a two year program where initially I get 3 treatments per week. These treatments consist of infusions with massive amounts of vitamin C as well as Vitamin b12 and something called DMSO. Both the vitamin C and the b17 are cancer killers. I also take something called ApeX (silver oxygen nano clusters) which is the third cancer killer.

What is your experience with the ht? Is it correct that the symptoms disappear and that the PSA goes down until one fine day (3-6 years) when the PSA starts moving up again and the symptoms start returning? Is the progress faster when that happens?
Posted 12/5/2011 8:50 PM (GMT 0)
Clocknut,
Suzanne Somers book Knockout is not about her giving advice but contains interviews with a bunch of holistic doctors who are famous for their work.
Suzanne herself is an advocate of holistic approach which she implements for her self.
Posted 12/5/2011 9:02 PM (GMT 0)
We are very evidence based here re cancer treatment. All medical treatments undergo rigorous assessment before their efficacy is accepted. This process does not seem to apply to what is known as alternative or holistic "medicine". It did not do Steve Jobs, Steve McQueen, (and a myriad of others) with all their money and resources one iota of good. Claims and assertions abound but I have never seen one fully documented case of holistic "medicine" curing cancer. (Billy - some text removed, rule 4, please -142). I think you would be wise to adopt a more rational approach.
Bill

 

Post Edited By Moderator (142) : 12/5/2011 2:26:37 PM (GMT-7)

Posted 12/5/2011 9:35 PM (GMT 0)
Oops. sad What did I say? The remark about modern day witchdoctors and a quick buck was intended as a generalization and was most definately not directed at anyone in particular. I am humbled by your admonition 142. smilewinkgrin
Posted 12/5/2011 10:04 PM (GMT 0)
Billy,

That was it - sent you an email explaining.

Posted 12/5/2011 10:14 PM (GMT 0)
Welcome to HW,

From reading your post, I am very much concerned for your well being. With that high a PSA, that many cancerous cores, and that much metastisis already to your bone structure, you are in a very serious situation. Normaly, for those starting with more indolent cases, we always stress to take lots of time coming to any treatment solutions. But in your case, you already have very far advanced prostate cancer, and time will work against you.

In my opinion, you need immediate traditional help, most likely in some form of horrmone therapy, or some combination hormone therapy. You may need spot radiation for some of the existing bone issues. Or you may need to be on chemo. In any event, you need to do something to buy precious time to slow down this advancing menace in your body.

I am not for these alternative methods, I will be honest with you. However, I don't think you or anyone else is wrong for trying such things, but they should only be a secondary means of helping yourself, only in conjunction with standard medical treatments for such a serious case of prostate cancer.

If you devote much time and energy applying the holistic or alternative approaches to your cancer, in lieu of traditional treatments, you very well could lose whatever window of opportunity you have before you. That is where the danger lies in my opinion.

You need to be under the care of the best oncologist you have access and means for. A good doctor will hear you out on some of these alternative means, but don't be surprised if many of those approaches are discouraged.

Of course, it is your body, your cancer, and your life. The ultimate decision(s) are entirely in your hand. As some other poster mentioned above, that alternative approach line of thinking may very well have cost Steve Jobs his life, since he did have a survivable chance with surgery with his particular variant of pancreatic cancer. We will never know for sure.

Please give some serious thought to some of the combined suggestions that have been offered to you so far. This is no time to test theories and unproven methods in your thinking, you need to act, and act soon, to slow down this fast moving cancer.

My best to you, regardless of your decisions, we are here to support no matter what.

David in SC
Posted 12/5/2011 10:31 PM (GMT 0)
Bengan

Very sorry to read your story. I don't have any first hand knowledge on your treatment choice but I wish you the best. I have made radical changes to my diet and wish I'd done so years ago regardless of having cancer or not, because I'm positive that I'm much healthier as a direct result.

Hero

Posted 12/6/2011 2:05 AM (GMT 0)
 The prescribed plan for my (by the holistic doctor - who is an MD BTW) is to go for 3 months and then possibly introduce ht so I might very well end up there if there is no improvement.

nothing wrong with that approach if that's your wish.  just stay on top of it and please keep us posted, and the best of luck to you cool !

ed

 

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