Need To Know My Up-To-Date Condition ... - Advanced Prostate...

Advanced Prostate Cancer
10,347 members12,281 posts

Need To Know My Up-To-Date Condition Before Treatment.

CarrotBoy
CarrotBoy

If you don't believe that self-healing is possible or at least beneficial, no need to reply. My question today is: If a person is on the right track and lowering PSA and possibly shrinking tumors with a myriad of natural supplements, food and teas, etc. over time, how can we get re- tested prior to surgery or other conventional treatments? Why aren't we able to get retested to know our current condition? It seems logical if I am healing, what a SHAME to get the prostate disgarded! I heard that the body wants to heal itself. Of course, natural means will take longer than RP, and natural remedies also benefit the heart, brain kidneys, more at the same time, and no side effects! My PSA already dropped from 21 to 8 and so I want retested to see my overall improvement. Trying to avoid surgery.

85 Replies
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Glad to hear your efforts are paying off. What do you mean by retested? Do you want another biopsy?

CarrotBoy
CarrotBoy
in reply to ITCandy

Yes, I would have another biopsy (but hope it would not have all 16 needle jabs again). I have an order for a new PSA test, as much as that tells. Thanks for writing.

Currumpaw
Currumpaw
in reply to CarrotBoy

Hey CarrotBoy!

16 huh? A TRUS biopsy. Not well thought of by those of us who have experience.

The best imaging at this time, to my knowledge. is in bore biopsy using a mp 3.0T MRI. Who does this is as important as the technology. I have suggested names to you in the past. That advice doesn't change. The best imaging is most important for you or any of us. You need to know what you are dealing with.

I suggested a relatively new technique that is the least invasive and most accurate of the ablation treatments. The doctor I suggested is who I would use--but that decision is your decision. You have to be comfortable with it.

Be careful about this self treatment to "heal", to destroy your cancer. Most of us that use diet and supplements do so to extend the time to recurrence or prevent recurrence. If diet and exercise were an effective treatment for cancer, to destroy it, there never would have been treatments and surgery. Sometimes it is necessary to accept that which we don't want to do.

The best imaging will show the chances of your cancer has to escape the prostate capsule and that changes the outlook if it does. At least every six months, were I you, I would have imaging. Even the very best imaging can miss something.

Diet, supplements, exercise and lifestyle changes do eliminate the need for imaging.

What is your Gleason grade? That also determines the urgency or need for treatment.

Reading some other responses I read that your Gleason grade is a 3+4. If so, were I in your situation, I would have some confidence in AS, your diet tweaks, supplements, exercise and lifestyle changes-- if you get the best imaging. Don't let it get out! The mp 3.0T MRI will keep the number of biopsies down which is advisable.

Everyone is different. Ruth Heidrich had great success with diet and exercise that not everyone will have but some will. Imaging! Don't let it get out.

Currumpaw

CarrotBoy
CarrotBoy
in reply to Currumpaw

Well thought out, thanks! What is AS?

Currumpaw
Currumpaw
in reply to CarrotBoy

Hey CarrotBoy!

AS is the acronym for Active Surveillance, what you are doing --sort of.

Imaging is a very important part of AS. Biopsies should be limited. An in bore biopsy using a mp 3.0T MRI greatly reduces the number of cores needed to be taken. A biopsy can cause erectile dysfunction by hitting one of the bundles. When that happens you are about halfway to having a prostatectomy.

Good imaging should be done at least once every 6 months to begin.

Be careful. Anything I know you can know.

Currumpaw.

You can get your PSA tested any time you want. If you can't get it through your insurance provider, the out-of-pocket cost is fairly low.

RICH22
RICH22
in reply to gregg57

we have a lab does whatever tests i want, without a dr's order. PSA test is about $40.

fish7days
fish7days
in reply to gregg57

anylabtestnow.com. $40. Do it as often as you want. Also walkinlab.com. 3T MP MRI around $400 out of pocket no insurance cost. Your regular dr. can give you an order.

RICH22
RICH22
in reply to fish7days

medicare covers 3T mpMRI, should be the very first diagnostic, along with reg. monitoring of PSA. if the mri doesn't show anything, and you have no symptoms of trouble, but PSA goes about 4-5... i dunno. a targeted biopsy is the best but i had a terrible time of it. Most guys claim they got over it fast... took me a month!

What you can never see (with affordable "conventional" testing, at least) is what is happening at the microscopic level with ALL the cancer hiding in your blood, bones and organs. Biopsy is invasive and gives an incomplete picture. PSA is a great measure of... PSA.

Is your cancer regressing? Very possibly. I initially thought diet, exercise, vitamins etc. might be enough to keep SOME cancers in check, and I still think that about SOME cancers. How about mine? That's guesswork.

What is clear is that PC is hormone-sensitive to some degree. I have decided that a change to my current hormonal regime is a good bet. I want to do that AND the lifestyle changes (which for me are a lot harder to stick with than I thought they would be).

RICH22
RICH22
in reply to noahware

i brought my PSA down from 17 to 14, but after finally getting biopsy and a Gleason 4+3, i went on casodex, with finasteride and tamsulosin. PSA dropped to less than 0.1, where it's been for almost 2 years.

fish7days
fish7days
in reply to RICH22

Hi Rich, good to hear. What have the side effects been like? How quickly did your PSA drop?

Thx!!

It really doesnot matter what treatment is getting your PSA down.....end result is the same and that is your cancer cells are dying. All the world's researchers use PSA as biomarker to know extent of cancer cells inside.

What will you gain by another biopsy ? Nothing. Because biopsy only tells how distorted or disfigured your cancer cells are. That you have already found out in first biopsy gleason grade.

The only real monitoring methods are (1) Bio Markers such as PSA and ALP (2) scans.

My suggestion is that keep using dietary intervensions, physical exercise and your natural

means...BUT monitor biomarkers and imaging scans carefully .

I like your message. But what is ALP? Please explain a little.

CarrotBoy wrote >>> "....My PSA already dropped from 21 to 8 and so I want retested to see my overall improvement...."

PSA going down can very well mean NOTHING other than infection/inflammation is being reduced resulting in a smaller prostate and less PSA. With 3+4 I would not put the cart before the horse. AS could still be "in play."

hansjd
hansjd
in reply to CarrotBoy

Alkaline Phosphatase, a liver enzyme, very important to monitor as it is a prognostic indicator for APC. Determined by blood test, along with other liver enzymes, kidney function indicators, blood cell counts, PSA etc. All important!

LearnAll
LearnAll
in reply to CarrotBoy

ALP is an enzyme Alkaline Phosphatase....Its a marker for bone turnover which tells you about extent of bone mets. For accuracy, its better to get Bone Alkaline Phosphatase . Because total ALP includes 50% which comes from liver.

tsim
tsim
in reply to CarrotBoy

When you had the first PSA you should have had a metabolic panel done. The ALP level should be included.

fish7days
fish7days
in reply to CarrotBoy

Alkaline Phosphatase. An indicator of bone involvement.

When I see posts about alternative medicine approaches I am reminded of Steve Jobs, who expressed regrets that he didn't take the advice of experts around him but spent 9 months dithering around with diet and meditation. I understand his chances were much improved had he acted on the advice of the people around him. With cancers that are more aggressive early treatment is the best shot at cure. I don't want to risk the cancer getting worse as the clock ticks down. And how much can you be sure that you are getting the real story about what is going on with PSA, scans and any other marker. In my case PSA has always been very low. Its not perfect. Scans don't detect everything. Not saying this is you, every cancer is different, but whatever you do, eyes wide open, avoid regrets. You are doing the right thing by asking this esteemed group of men.

D_Alden
D_Alden
in reply to 45RPM

Not to highjack the thread but Jobs lived 8 years after diagnosis with Pancreatic cancer, average is 2 years. Paul Allen of Microsoft lived 9 years after his second diagnosis of Lymphoma and ADAIK he was treated with only conventional SOC. So the things Jobs did don't seem to have much adverse effect. I suppose in the end we will all have some regrets on our journey for 'woulda, coulda, shoulda' therapies that we might have availed ourselves of to delay the date of expiration.

I have been taking fenbedazole for a couple of months my PSA has gone from 7•6 to1•6 I am seeing doc in 1 more month I am going to ask for another scan to see if I still have cancer.I had an injection of diphereline 5 mths.ago but the side affects are too much

Shanti1
Shanti1
in reply to Whoogo

Diphereline is given as an injection that can last up to 6 months. Do you know what strength you were given?

Whoogo
Whoogo
in reply to Shanti1

My dosage was 22•5 mg

Shanti1
Shanti1
in reply to Whoogo

I have an interest in fenbendazole and other off-label meds, so I like to know if a PSA change can be isolated to the off-label med or if it could be attributed to another therapy. In your case, the 22.5mg Diphereline would be given every 6 months and if you were to test testosterone, it should be at castrate levels now. This makes it difficult to attribute the PSA drop to Fenben when the PSA is responding as expected to 6mo Diphereline.

Whoogo
Whoogo
in reply to Shanti1

I am not sure what has caused levels to drop but hoping it was because of fenbedazole.The urologist was very surprised it had dropped to that level will follow up with him next month

Shanti1
Shanti1
in reply to Whoogo

Well, whatever it is, I wish you health and continued success with your treatments.

Whoogo
Whoogo
in reply to Shanti1

Thanks Shanti1 it is a worry because I do not want to have another injection of diphereline, especially because of chemical castration I am not sure whether this is reversible

Shanti1
Shanti1
in reply to Whoogo

Hi Whoogo,

The chemical castration is reversible, but it can take a while for testosterone to come back after the 6-month injection wears off. You can measure your testosterone levels with a blood test to see where they are. Unfortunately, diphereline and other medications that cause chemical castration do not kill the cancer permanently, they only put it to seep for some time. If your cancer is still confined to your prostate, you may have the opportunity to actually cure it, either with radiation or some other ablative procedure or by having a prostatectomy. Once it has spread to places distant from the prostate, there is no cure, and this is the situation that many men on this forum are in. Do you know your Gleason score or how many cores in your biopsy were positive? This may help you make a decision.

Something else that is repeated often on this site is that urologists are typically not the most well-informed doctors for managing prostate cancer. In your case, it sounds like the urologist may be trying to manage localized prostate cancer with androgen deprivation, which doesn't seem appropriate to me unless it was given to shrink the prostate for prostatectomy or to make it more sensitive to radiation in an attempt to cure. I would suggest making an appointment with the best medical oncologist and the best radiation oncologist you can find in your area and getting second opinions from them. The men on this site are extremely helpful and knowledgeable and can help you sort out the information and opinions you gather from your doctors if you make a post.

Whoogo
Whoogo
in reply to Shanti1

Thanks Shanti1 he told me he wanted to try radiation pellets but because I was waiting to have a bypass surgery on my blocked artery in my leg he gave me diphereline shot.I have been a gym junkie for most of my adult life but after dip.shot I have had really bad lower back pain and fatigue a new haven't been to gym since Dec.I have just been discharged from hospital after bypass and hoping pain in back dissapates so I can start training again

Shanti1
Shanti1
in reply to Whoogo

That makes more sense. I hope you are recovering well from your bypass in the leg and that you are able to eliminate the prostate cancer!

Can you pls tell me what have you used under alternatives , my father has also been trying a few alternatives but nothing seems to work

CarrotBoy
CarrotBoy
in reply to Manal321

There are a lot available, some of which others (even doctors) don't know. Don't take all of these in one day! Maybe 5 or so, some in combination. In the morning, I take a dexox pill, Swanson's Detoxilean. Other Swanson's aids include Curcumin&Berberine, Grape See Extract (capsule), Pycnogenol, Aurora Blue (7 blueberry blend from AK), and Saw Palmetto&Beta Sitosterol. Larry King has a good prostate formula called ProstaGenix.

Other good cancer killers are apple cider vinegar (now in gummies), Quercetin, natural beta carotene, MSM, Selenium (I take them with tiny sulphur tablets), resveratrol, cranberry, lycopene, an vitamin D3 which is actually a hormone! Also garlic or black garlic, vitamin K2, pomegranite, bromelain, and incredibly- melatonin. An occasional drop or two of iodine. Build your immune system with a mushroom blend called ImmPower, but Swanson's has it much cheaper. Take probiotics occasionally for a healthy tummy.

I also drink low sodium V8 juice in the morning, and good carrot juice during the day. Once during the day, I drink Jason Winters original herbal tea. (They say he cured his own tumor(s)?) Food: I have an account of a Dr. Joanna Budwig from Germany mixing unrefined flax oil with cottage cheese to give your good cells more oxygen and energy (electrons)! Add berries or cinnamon for a tasty lunch.

Lastly, I have heard that some anti-oxidents like vitamin C and Co-Q 10 are good in preventing cancer, but watch out, because they turn on you and begin to help the cancer!! As you know, cut down or totally avoid sugar, the worst of all. : )

RICH22
RICH22
in reply to CarrotBoy

thank you, pal - i take several of the things you listed, but rejected a couple of "cures" like the cottage cheese flax oil scam. i haven't seen anything about coQ10 or vit C ever promoting cancer. the 4 most effective anti-oxidants are vit C, E, selenium and beta carotene, which i've taken for over 3 decades... still got 3 forms of cancer, so bottom line? if yer gonna get it, yer gonna get it, no matter what you do. Recently tried berberine, seeking a good anticholinesterase inhibitor, which improves mental alertness, memory, mood, etc. but the stuff knocked me for a loop! tried taking half a dose, still very strong. may try yet a smaller dose, who knows?

unfiltered apple cider vinegar is great stuff, lowers blood pressure, blood sugar, DON'T swallow straight! can shut your throat down and stop your breathing! dilute with anything ya want. 2 tbs is all i use, whenever. garlic and cayenne, also great for blood issues.

my buddy in Florida was taking 20! caps of saw palmetto, to control incontinence... told him to get checked out fo PCa, but instead, he started drinking a hot tea with several herbs, lemon and raw honey... presto change o, incontinence gone, along with ALL the saw palmetto! turmeric, black pepper, ginger and cayenne were the herbs.

thnx again for the info. stay safe, stay home!

CarrotBoy
CarrotBoy
in reply to RICH22

The cottage cheese and unrefined flax oil method was documented as working in many countries around the world, which the medical community dismissed. I don't think anyone could make money on flax and cottage cheese.

The book which describes Dr. Johanna Budwig's research is called "How To Fight Cancer And Win" by William L. Fischer. Might be out of print(?), first printing was in 1987. See Chapter 5: The Miracle Of Linseed Oil. It addresses the electrical and communication needs of our healthy cells. What would it hurt? Just sayin'.

RICH22
RICH22
in reply to CarrotBoy

did the research 2 years ago, nothing persuasive and sounded as dumb as the baking soda cure... the idea is the if cancer thrives in an acid environment, making your body more alkaline will kill it. if it were that easy... well come on, it ain't, period! but sure, if you wanna try it, be my guest. i LOVE cottage cheese, speshly the large curd. flaxseed oil is harmless... but linseed oil? no. sharecare.com/health/flaxse...

CarrotBoy
CarrotBoy
in reply to RICH22

Rich you are correct. Since cancer thrives in acidic environment, for a while i was buying alkaline water, until I read that your body maintains a constant pH no matter what. Somewhere around 7.4? And we cannot change that if we try.

RICH22
RICH22
in reply to CarrotBoy

7.4 would be alkaline, so i'm guessing it's less the 7.0. What blew me away was discovering that distilled water is also slightly acidic! waterdistillers.com/blogs/w... - i've used a distiller for almost a decade, paid for itself many times over, not having to buy filtered water, even from the machines outside the supermarkets, that used to sell it 35-50¢ a gallon. h2olabs.com is still selling their excellent units for the same price, $250. Amazing.

Whoogo
Whoogo
in reply to Manal321

I drink 4 cups of warm to hot water every morning no food for I hour after and to tabs of fenbedazole twice daily

yes, please tell us what supplements and foods you're using... sounds terrific!!

CarrotBoy
CarrotBoy
in reply to RICH22

Hope you can see my reply to manal321 above.

Whoogo
Whoogo
in reply to RICH22

There is an article on Google called my cancer rocks it is interesting and reviews seem positive but what works for one doesn't always work for others.I sourced pure fenbedazole from Lithuania 100g(cheap at about $80 postage inc.)and make my own tabs and take 2ו22 per day my PSA has gone from 7•6to1•6over 3 months but I am still under treatment with follow up next month with more tests

RICH22
RICH22
in reply to Whoogo

Totally agree, different things work for different cases. So you've only had a biopsy (what was Gleason Score, from biopsy analysis?), then a shot of diphereline, no radiation, no hormone and still have your gland? Then started fenbedazole, a dewormer (anti-gastro parasite)? Bottom line, you still have your gland, with a PSA of 1.6 -- sounds good to me. You mentioned chemical castration, the diphereline it sounded like... Just trying to put the jigsaw pieces together. Many of us try to tell our story but few of us use chronological order... being distracted by the new information we gather along each step of the way.

Whoogo
Whoogo
in reply to RICH22

Sorry I know I am all over the shop just had a bypass on blocked vein in leg and have follow up with doc on 6th June for prostate cancer I will have a lot of questions for him as a result of this forum.I am not sure about Gleason score was in shock when he told my biopsy was positive for cancer so unbenown to him I started taking Fenbedazole and my PSA went from 7•6 in Dec2019 to 1•6 in April2020and I am hoping it is even lower in June.

Hi CarrotBoy, it looks that you are going the right direction avoiding radical treatments. Please also avoid a second biopsy, another barbaric practice, and do a PSMA PET/CT. Biopsy may spread the cancer and this pet/ct is quite safe. In Europe I have been paying about $1.500 US.

I already told you I am on Fenbendazole and some vitamins. Look at WHOOGO. He is an example of the efficacy of this Alternative Treatment...

You might be an exception to what has happened to so many of us PCa patients / survivors, but I have yet to see anyone claiming (successfully over time) to have beat this disease down by supplements and diet alone.

I look forward to seeing how well you manage(d) in the future. We could all benefit from your experience - I hope you are correct while wishing you well ....

timotur
timotur
in reply to RonnyBaby

Agree, from what I've learned since dx, a good diet may slow progression, but only SoC-tx can cure PCa, or significantly delay its consequences.

RonnyBaby
RonnyBaby
in reply to timotur

Just to mention something interesting - I totally changed my diet - went KETO and went 'trendy' - for awhile.

I hated KETO -it felt like my life was changed forever - in a negative way.

I lost a lot of weight, but that made NO difference (as far as I could tell) in terms of the bigger picture outcome.

I'm now eating more like I used to - prior to PCa Dx - although I am eating 'better' by including more veggies.

I still get my 'fixes' because at the age of 68, I believe that some type of pie and ice cream won't change a thing - unless I get stupid and go overboard.

I do a lot of supplementation and I'm a medicinal cannabis grower / consumer.

I didn't get ANY better at all - I had to go thru the full spectrum of treatment(s) before I could state with confidence that I thought I was getting and feeling better.

Perhaps that was in my case only, but I doubt that it doesn't apply to many others ....

timotur
timotur
in reply to RonnyBaby

RB: you have an inspiring bio, keep doing what you are doing. After dx, I was able to "flatten the PSA curve" by dropping meat/dairy, but it didn't go down until I had ADT/radiation. I think the best bang for the buck is a good diet (esp broccoli/kale) and exercise, and avoid insulin spikes to minimize the IGF-1 factor, however it's done, keto, low-carb, whatever. Beyond that, I lowered milk consumption due to association of the protein casein with PCa. I still eat red meat 1-2x/wk, but try to keep it to high quality grass-fed beef. I do cheat once a week and eat an In-N-Out burger with fries. I take a few supplements to avoid metastasis-- aspirin and MCP. That's about it, hope for the best.

RonnyBaby
RonnyBaby
in reply to timotur

I know you've posted in the past, so you have a track record to share. Without reading your bio (now) , I recall a positive outlook and attitude from you - we aren't the same, as PCa survivors, yet we offer up / exchange our experiences hoping that some else can benefit from it.

Your comments show how plugged in you are to whats' happening in your particular case + fighting back - good for you - I certainly wish you the best

CarrotBoy
CarrotBoy
in reply to timotur

Tell me what SoC-tx is. So many abbreviations!

timotur
timotur
in reply to CarrotBoy

SoC = Standard of Care (best practices)

tx = treatment

CarrotBoy
CarrotBoy
in reply to RonnyBaby

My PSA dropped again from 8.4 to 7.6 in two weeks. Something is working.

What are the opinions in regards to Dr. Ornish' lifestyle approach to slowing/stopping early stage PCa? If I recollect, 50 men in the control group, 50 in the experimental. All in the control group got worse, all in the experimental stayed the same or improved. That's where I'm at currently, I have (so far) essentially zero to very slight change in PSA for 3 years now. I keep trying tweaks to see if I can't do better. I get PSA tested regularly, and MRI annually. Are there opinions about large dose Vit D? I'm currently taking 7500 IU daily, and it is recommended for COVID as well.

RonnyBaby
RonnyBaby
in reply to wstein25

Glad to see your results - no doubt, some of us have the right biological combo(s) and lifestyles to assist us in combating cancer in general and PCa specifically.

Perhaps you could elaborate more in a separate post on what lifestyle and/or dietary changes you've made with some of the more significant statistics and numbers to allow others to learn something that might help them on their journey.

There's so much info out there, it's hard to keep pace with what you can or can't do ....

wstein25
wstein25
in reply to RonnyBaby

Hey RB,

I'll try to be concise but also provide what I hope will be useful information. From being "well", in June of 2017 PSA rose to 4.5. A biopsy was recommended. After considering the risks of infection, false negative, and even possible spread of a contained cancer I elected to get the U of Michigan Mi-Prostate test. I don't pretend to understand how it works. Some genetic materials in the urine:"T2:ERG fusion as well as another marker, PCA3". The results of the test claimed that the results of a biopsy with 91% certainty would indicate cancer and a 72% likelihood of aggressive cancer, presumably meaning high Gleason score. This all scared the hell out of me. I am very leery of how profit driven modern medicine has become. Don't get me wrong. The diagnostic tools are nearly magical. I spent probably a week scouring the internet and found Dr. Ornish' study, and decided to give it a try. I immediately began a whole food plant based diet. I think soy sauce and ketchup were the only processed foods I allowed. Over the interval from 11/15/17 to 10/15/18 I tested PSA every 3 months and PSA dropped consistently (starting at 5.0) to a final value of 3.2. I was pleased except for the fact I lost about 18 lbs in the process dropping to around 139 lb, which is pretty darn low for someone 6 ft tall. Then stuff happened that I can't explain. I haven't been as scientific as I should have - I never thought I would need to be . I have since then gained a few lbs, about 145 now and my PSA has bounced around, and peaked at 5.19 this past January. It has since fallen to 4.9. Supplements I have tried: Cayenne, Turkey Tail, Reishi, Pomegranate, Ashwaganda, Red Yeast Rice, Rosemary. Currently I am taking Vit B, C, D, and E, low dose aspirin, Selenium, Turmeric. I am scheduled to be tested in about a week and I'll let you know. BTW, Ornish' protocol called for large amounts of soy. I probably don't get as much as his participants got, but I have probably 1 serving of Tofu plus 1/2 cup of soy milk every day.

Best of luck to you.

CarrotBoy
CarrotBoy
in reply to wstein25

Hold up on the vitamin C and E. Oral C begins to aid the cancer. However, high doses of intervenous vitamin C are known to help.

wstein25
wstein25
in reply to CarrotBoy

Hi CB,

I would be curious to know of the sources that recommend against C and E. I have more or less taken Ornish as "God's truth". Are there any other clinical trials that have had success? I suspect there are many that have concluded otherwise. I searched for the journal article of Ornish' study, here is an excerpt describing the experimental group's protocol:

"Experimental group patients were prescribed an intensive lifestyle program that included a vegan diet supplemented with soy (1 daily serving of tofu plus 58 gm of a fortified soy protein powdered beverage), fish oil (3 gm daily), vitamin E (400 IU daily), selenium (200 mcg daily) and vitamin C (2 gm daily), moderate aerobic exercise (walking 30 minutes 6 days weekly), stress management techniques (gentle yoga based stretching, breathing, meditation, imagery and progressive relaxation for a total of 60 minutes daily) and participation in a 1-hour support group once weekly to enhance adherence to the intervention. The diet was predominantly fruits, vegetables, whole grains (complex carbohydrates), legumes and soy products, low in simple carbohydrates and with approximately 10% of calories from fat. The diet is intensive but palatable and practical. In earlier studies most patients were able to adhere to this diet for at least 5 years.10 –13"

He has his group taking massive mounts of C and a good bit of E. And they all held constant or improved. If I knew how to add attachments, I would include the whole paper for you. Thanks for "listening".

CarrotBoy
CarrotBoy
in reply to wstein25

Hello wstein25. Thanks for your information. My source for avoiding vitamin C appear in the book, "How To Starve Cancer" by Jane McLelland, Grad. Dip. Phys. Page 95: ". ..there is a clear distinction between supplements that prevent cancer and supplements that treat it. There is a tipping point where some anti-oxidents useful for prevention (LOW oral doses of vitamin C, E, and N-Acetyl Cysteine (NAC), a precursor of glutathione then switch their allegiance and support the enemy, hwlping to promote and fuel its resistance to apoptosis (death) , making it immortal."

Page 141: "In the case of vitamin C, the sweet spot for its cancer-busting properties is a HIGH dose." Page 142: "LOW doses of vitamin C and ALA are to be avoided. At these levels, vitamin C and ALA help glutathione neutralize the excess toxicity inside the cell allowing it to remain immortal".

Someone said you have to take 2000 mg of C to be effective, but when you quit, you may have a relapse. Intervenous vitamin C is said to work because in uses high doses. But you can take oral C along with intervenous C.

wstein25
wstein25
in reply to CarrotBoy

CB - How interesting. In Ornish's study, the protocol called for 2 G - that's 2000 mg of Vit C daily.

RonnyBaby
RonnyBaby
in reply to wstein25

The fact that you've been 'stable' in terms of PSA for 3 years is remarkable.

I've read of a few patients who have stabilized long term, which is what I'm hoping for.

Without reading your whole bio / story, I'm wondering about your original Dx and numbers that might make it more so.

You're not undetectable, but you've succeeded where many others have stumbled.

Thanks for your generous response. It is interesting to note how many supplements we BOTH take that are similar. Picking high quality supplements and the timing / interaction are factors in how well they support the organism.

I look forward to seeing how you manage down the road.

Ths!!

wstein25
wstein25
in reply to RonnyBaby

RB,

I mentioned a few reasons why I did not want biopsy. What I didn't say was, earlier in the summer of that year, 2017, I had a dumb ass cycling accident, totally my fault and totally preventable. I broke my hip and had to have emergency surgery for hip replacement. So I am bionic now! Titanium, and UHMW.

In any case the fear for anyone with joint replacements(or it should be) is infections. If the artificial joint get infected, it almost always has to be removed and replaced. Medical speak: "revision". And revision surgery is a total nightmare. Takes many hours, often loss of bone, and no doubt even more scar tissue, pain, with less range of motion. So the idea of increasing my risk of infection from a biopsy was a huge factor in my getting the UMich test. I get an 3T MRI once a year and so far, the "lesion/tumor/spot" has not changed much, maybe larger by a few %. But I really don't know how accurate they are.

RonnyBaby
RonnyBaby
in reply to wstein25

I got lucky - I got a 1/2 knee Oxford and one knee cap replacement about 6 years ago. So far, so good.

Don't know what its made of.

They tell me a 1/2 knee is easier to replace later than a full one, assuming I live long enough or still qualify for 'senior' assistance.

wstein25
wstein25
in reply to RonnyBaby

Other - I exercise about 45 minutes a day. A very brisk 1/2 hr hike-walk, and a second 10-15 minute easy walk after dinner. Ornish had 1 hr of meditation every day. I would go nuts!

RonnyBaby
RonnyBaby
in reply to wstein25

You're doing all the right stuff.

I'm also one of those who can't seem to meditate - my brain doesn't shut down easily and I have a BIG insomnia issue that keeps me off balance far too often.

I take a bunch of herbals and some medical cannabis tinctures to try to manage the sleep disorder, which is genetic in nature.

When I was under active treatment, the insomnia was worse - it felt like a curse at the time.

I had to ween myself off the prescription sleep aids - they just made things worse.

Then, the search for 'natural' sources to help combat it began.

I'm still trying to solve it, but IF I ever get it happening, in a repeatable way, I'll be sure to share it with anyone willing to read about it.

I'm as bad a hardcore case of insomnia that is out there - medically confirmed as genetic .... (sleepwalking history confirms it FYI)

IF I sleep between 4 - 5 hours in a night, that is a huge success. Typically, I get maybe 3 -4 hours in a 2 - 3 day period.

My worst stat is the week long sleepless ( a personal record) event that happened about 4 months ago. I was bouncing off walls while I tried to walk - couldn't drive, incredibly overtired - barely able to speak etc ...

It makes me wonder how I didn't get cancer sooner !

How can a human heal properly if they can't sleep ???

I know some people manage well without sufficient sleep (I've done it my whole life) but common sense and the medical community keep hammering home the fact that I'm abnormal ....

wstein25
wstein25
in reply to RonnyBaby

RB - insomnia sounds awful. I get a bad night's sleep every once and a while and feel like crap all day. I sure hope you can figure it out. Have you been tested for metal and other toxins?

RonnyBaby
RonnyBaby
in reply to wstein25

NO, not tested for them, but it could be a possibility.

In my case, it runs in the family - my mother and all my siblings take Rx drugs to sleep, but they really don't work in the long run - so some add booze to close the deal.

My cannabis is the key - that's what I'm working on in terms of genetic selection with a bit of trial and error. I don't drink alcohol, other than 1/2 a glass of red, with a meal.

Problem is it takes months to try (grow) a new strain.You also need to source medical grade seed(s).

I grow my own - I don't trust other sources and the cost is big $ if you have to buy third party bud.

I really liked the book Radical Hope. It’s got something for anyone that wants to improve their health during cancer : I am listening it thru Audible . It’s what all these wonderful people that happens to have PC all say on how to live and thrive.

😊

Chocolate chip ice cream (two scoops)...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/15/2020 6:10 PM DST

New York Style Cheesecake with Chocolate chip ice cream(two scoops)

To die for.................

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/15/2020 9:15 PM DST

RonnyBaby
RonnyBaby
in reply to j-o-h-n

Make me one of those too, Alexa (after you roll me one) ...

j-o-h-n
j-o-h-n
in reply to RonnyBaby

To live for.................

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/21/2020 2:45 PM DST

Drphil1938
Drphil1938
in reply to j-o-h-n

You guys don't know the truly exceptional value of a well made gin martini, stirred not shaken with two queen olives stuffed with anchovies. To drink not die.🍸🍸🤠

j-o-h-n
j-o-h-n
in reply to Drphil1938

To drink and not drive.....🍸🍸🤠

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/21/2020 8:35 PM DST

If you want another prostate biopsy you are a better man than me ... errr, wait, after 3 years am I still a man? 12 of them big assed hollow core needles. I counted them. And as I hobbled down the hall I told myself "never again". I think there are better ways to get the knowledge you want. I'm sure someone here knows the answer. (Isn't it possible that the biopsy itself can spread cancer cells, and then you are metastatic?) Hope I'm not bugging you. Best of wishes.

LearnAll
LearnAll
in reply to monte1111

AND the better way than the bloody biopsy is called PARAMETRIC MRI of Prostate..which is infact a better option than biopsy because you can see tumor fully and clearly this way and measure size, location etc. And as usggested by someone else above..a PSMA Ga68 PET CT will make even a 2 mm size tumor visible ..but in USA its only available in 2 or 3 hospitals.

Ga68 PSMA PET CT is available easily in Germany, Australia, India and a few other countries.

Parametric MRI of prostate is commonly available in USA. Costs about $2000 to$2500.

Is it not universally accepted that a Pathology Report from a TISSUE BIOPSY is what is needed to IDENTIFY PCa Grading (Gleason Score) whereas SCANS can not do that???

CarrotBoy
CarrotBoy
in reply to LearnAll

Thank you LearnAll. Your message what I was looking for in considering a new diagnosis. Now, to find a doc/facility willing to do that. Any that you know of? I'm in PA.

Let them knock you out........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/15/2020 9:17 PM DST

Well, PSA is only one factor to consider. What's your Gleason score? What involvement of cancer? My heart is with you but my head says you need to get informed as you can before making a decision. All the best!

Carrotboy...

My Onco was not in agreement with me going off Lupron...so I studied dozens and dozens of research papers and put my data in it to see if I am a suitable candidate for Intermittent ADT. And I am. So I had my last Lupron inj on Dec04,2019 and since then, I have been monitoring my PSA, T level, ALP, CRP and other labs. I am paying privately for every 2 week testing and keeping record. Yesterday, My PSA came 0.2 and Free T came 0.05 ng/dl. Note that I am off all ADT for last 5 and 1/2 months.

I am a huge believer in natural treatments and physical exercise . My diet is loaded with a lot of antioxidant, anti-inflammatory ,anti cancer foods ,herbs ,spices, leaves and roots. I walk 5 miles a day every day (have fitbit record) and dance on bollywood music. Lie in sun 20 to30 minutes each day.

Paying for my labs out of pocket every two weeks is somewhat expensive ( approx 100 -120 dollars a month) but it is much cheaper than toxic treatments and the troubles which come with them. I am asymptomatic so I do not see need to do imaging scans often. Keeping an open and objective mind ...whenever needed on basis of lab data..I will get back on lupron train.

CarrotBoy
CarrotBoy
in reply to LearnAll

So glad to hear the natural route is working for you. Yours is one of the few positive messages (positive in terms of success).

RonnyBaby
RonnyBaby
in reply to LearnAll

I noted your comment with interest and would like to offer something up about an ADT holiday 'plan'.

I also note the 5 1/2 months and low 'T'.

I'm on an ADT holiday now. It started with a withdrawal time from ADT - typically, time ON = time RECOVERING to 'normal' - or your new normal, which could be permanently altered. It's a crude rule of thumb, but not that far off the mark for some.

I was 'on' for 16 months and have been 'off' for about 20 months. My PSA numbers have really jumped in the last 6 months, along with my 'T'. I'm at least 1.3, but I'm expected to climb back somewhere. The fact that the prostate (even a radiated cooked one) still 'functions' seems weird, to say the least.

My testicles shrunk a lot - they've come back whole and round again - another 'surprise'.

My MO doesn't want to make any predictions or guesses - we don't really know where I'll end up, but I will deal with it in due time IF I need to cycle as well. At least I'm still castrate sensitive and there's room to grow before any alarm bells go off.

In the meantime, I'm living like a normal 68 year old - doing fine and enjoying the good time(s) while I still can.

When I first got the Dx 3 years ago, I thought I was a dead man walking. Ask me today when I think PCa will actually kill me - I'd be thinking at least another 5 more likely 7 - 10 - maybe more - who knows - the point is I don't have the answers but I have learned how to better cope with the fact that mortality is something we all need to accept - we just hope for a good day today and a better one tomorrow.

I was on lupron for first 8 months so I do not believe that it is only natural treatment.

I do know that natural way has contributed to me getting better.

Logic is that if whatever you are trying can reduce your PSA from 13 to 8..then...why the same treaatment can not reduce PSA from 8 to 3 ?

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