If I'm eating all the healthy stuff and taking many of the supplements recommended by the smart people on this site, and exercising most days but my psa doubling time is as fast (3-4 weeks) as it has always been post-primary treatment, then does that mean the exercise, supplements and diet aren't slowing metastasis or tumor growth?
My MO claims that the supplements etc aren't doing anything beneficial because the doubling time is still the same during Lupron breaks. Is it possible that the supplements, exercise and diet are slowing/preventing tumor growth or distant mets even while the doubling rate stays the same.
The doubling rate is only in effect when I've been on an intermittent Lupron break. When I'm on lupron, the psa has gone down to 0.01.
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It's good that Lupron is working well for you. As far as PC goes, the reason for dietary changes and taking most supplements is to help you feel like you are doing something to contribute to your therapy. Research doesn't support their use, but psychology does.
there are several studies I've read about certain foods extending life from prostate cancer death. They might not work for all adv prostate cancer patients but I'm trying to determine if the stuff is working biologically in some way even if the psa is rising? If the stuff I'm doing isnt working biologically then I could save myself time and energy and just put all my psychological eggs into exercise and diet baskets and skip the supplements.
The only supplement that has halfway decent evidence is sulforaphane, but even that is weak. Unless any drug/supplement has been shown vs a placebo to work safely in humans, it lacks credible evidence. But you may be willing to accept less proof than a scientist would - and that is certainly your choice.
Not everything works for everyone. I will not ,however. denigrate the work of world reknowned urologists such as Dr. Laurence Klotz or Dr. Charles "Snuffy" Meyers. I don't have anything hanging on my wall like they do.
Low Dose Naltrexone ---
Low Dose Naltrexone and Lung Cancer: A Case Report and ...
Hi Tall_Allen. Do you think that Joe Tippens would be alive today had he not taken Fenbendazole? Do you think that the Care Oncology Clinic are wasting everyone's time and money with their treatment protocol? Do you think Jane McLelland spontaneously went into remission/ cure with no attribution to the many and varied metabolic controls she applied? I think that there is a fair body of evidence that cancer can be held back if the right treatments and controls are applied. Whatever they are... Now finding the ones that work for each individual is a different matter...
I have no idea if he would still be alive, and neither do you. Anecdotes are not proof, as much as you or I would like it to be. The only way one knows what would have happened is to conduct a randomized trial. Cancer patients are prone to being duped by such unsupported claims, and some, sadly, make money off of it.
There are always cases of spontaneous remission for every cancer:
At some point the lupron will quit working and you don't want to let that doubling time get away from you...Things can get out of control in a hurry...Hove plan 2 ready..
thanks fairwind but I'm trying to get a specific answer to my question - is psa the end all be all or can the diet, exercise and supplements be slowing tumor growth even if the psa is rising.
it starts moving immediately. The doubling time is pretty consistent whether it's near .01 or in whole numbers. It goes down from 8-12 to .2 or below in about 2 months but it takes about 9-10 months after that to get to .01. I always read about certain supplements or foods helping block tumor formation but I can't tell if something can be blocking tumor formation even if the psa is rising.
Your first note is exactly why I have been screaming from the rafters. I can advise that NONE of the smart guys on this site believe that diet can have a major impact on advanced PC. Thus, do not rely nor depend upon anyone who professes otherwise, that sadly, has taken so many in as the only way out. See my earlier comments.
You need to live large, make up a bucket list and live life to the max. DO all that you can in scientifically and medically proven treatments, do get into a drug trial or two if you can-if nothing else, you sacrifice in that regard might save an man, perhaps your own son in future and researchers need us to contribute our bodies in order to make advancements.
Do eat and live healthy, but live my friend, for life is short!!!
" Is it possible that the supplements, exercise and diet are slowing/preventing tumor growth or distant mets even while the doubling rate stays the same."
Currently that is not known or knowable.
And personally I wonder if supplements that are protective of your cells are really what you want AFTER you have prostate cancer and you want to your immune system to be killing the cancer cells with unrestrained abandon.
After the cancer mutation has taken place, it is a little too late to attempt to stop cancerous cell mutations or to inhibit the early death of cancer cells.
In response to both you and billyboy3 , diet is no substitute for cancer treatment, but emerging evidence seems to suggest a healthy diet and exercise can make a huge difference over time. If you don't survive your cancer for years, there won't be time to make a difference.
There are no magic bullets, and what happens in a petri dish isn't what happens in your body. For example, some people try to "starve" cancer with diet, and end up starving the immune system that's trying to fight the few cancer cells that are resisting ADT.
Exercise is hugely important because it helps with sensitivity to insulin and other cellular signals. It also promotes heat shock proteins that protect normal cells from cancer treatments. Cancer cells usually make large quantities heat shock proteins for themselves, so if you don't exercise you can end up in a position where your cancer withstands treatment better than your healthy cells.
My theory is if you're lucky enough to get a good response to treatment, then healthy habits can make a significant difference in how long you respond to treatment. That's why I'm taking my Abiraterone, eating broccoli, and running like a lunatic.
Most of my thinking about diet is heavily influenced by this video previously posted by somebody else: uctv.tv/shows/Diet-and-Exer...
There's no definitive proof in there, but they are trying diet and exercise interventions and looking at long term outcomes, and seeing some statistically significant differences. Of note is that their recommendations specifically say "Do not consume single vitamin or mineral supplements unless doctor recommends".
They are recruiting for studies here: urology.ucsf.edu/lifestyle-.... The data is coming. If you live near UCSF you could be part of that data.
The sad truth about statements like- consult your doctor about this it that is that they don't know much about many things. Some doctors no nothing about food vitamins it supplements because they haven'thad a class on that since their freshman year in college. a year or two ago I asked the medical oncologist from metformin and he literally didn't even know what it was!
Thanks for the video. I believe that Dr. McDougall also advised against vitamins except for one, B12. A vegan needs to supplement with B12.
I have seen how my body responded to supplements in the past before cancer. The difference now is the amount, types and frequency.
Organic? Fish? A can of lightly smoked sardines? I posted a study where men that consumed fresh fish had a lower than average incidence of prostate cancer and men that ate smoked or preserved fish had a higher than average incidence.
It seems that the diet that the folks at UCSF put together is reverting to a starting point and ignoring studies showing the efficacy of drugs such as Metformin, Atorvastatin in slowing prostate cancer not to mention natural substances proven in studies to be helpful.
It is a good diet but a little "light" on some of the important things.
Diet alteration studies to a plant based diet to treat prostate cancer aren't new. I have been doing this for too long. There have been similar studies and diets including Dr. John McDougall's diet that Ruth Heidrich, a committed runner who I believe holds records, made famous. That was in the 1982.
This study was about 20 years ago. In the video a man with prostate cancer and bone metastases reversed his cancer and the metastases disappeared in a bout a year. He was all "better" healed, right? He began eating some turkey, chicken and tuna fish. His cancer very aggressively came back. Returning to the diet that had healed him no longer had an effect.
Interesting video, but not completely convincing. As they say in the video, one case study doesn't prove anything. As for the study with 10 men, pause the video at about 3:29 and look closely at that chart they pan over very quickly.
You'll notice that yes, PSA did drop in the experimental group, from an average of 6.23 to about 5.98. That same group also lost 4.5 kg (about 10 lbs), while the control group did not. Weight lost is also known to impact cancer, so did the diet directly affect the cancer? Or simply cause weight loss that then affected the cancer.
Similarly, did they control for the confound that men who better adhered to the diet may have been more health conscious and exercise more? Sleep better? etc., etc.
Now here is the very important point to all this: This diet intervention showed about a 5% drop in PSA over 12 months. For comparison, about 80% of men on ADT will achieve at least a 50% drop in PSA. Diet is just not in the same league as medicinal approaches to getting out of control cancer back under control quickly.
BTW, thanks for sharing links and videos with actual information! I very much enjoy an evidence based debate.
Look at the video at 2:20. Arachidonic acid, an omega 6, found in sunflower, corn oil, safflower and cottonseed oil. Dr. John McDougall's diet followed by Dr. Ruth Heidrich specifically said not to consume oils. Interesting. That was the early days. We now know the benefits of olive oil and black seed oil.
Yep, the UCSF material puts eggs/choline and saturated fats into the "possible higher risk" category, and puts olive oil, cruciferous vegetables, and fish in the "possible lower risk" category. I haven't had an egg, sausage, and cheese breakfast sandwich since. Those are out, pea protein powder in soy milk are in. Will still have the occasional omelet as a treat, and I've had maybe 5 hamburgers in the past year.
What were we debating about again? Because we seem to agree that eating healthy is important, though I still say far from curative. "Vegan" isn't specific enough, because you could have an impossible burger, french fries, and a large soft drink and be both vegan and unhealthy.
The immune system begins in bone marrow. The small shocks transmitted through the skeletal system when running on a surface, not quite as much with a treadmill, stimulates the body to deposit minerals in the bones and stimulates the immune system.
A vegan diet and the use of some herbals to clean and optimize the liver's functions.
Testing for heavy metals. If heavy metals are found to be high, chelation to remove heavy metals should be done. A bonus--chelation also removes atherosclerosis.
We are past beginning, basic, vegan diets as there has been so much research regarding certain supplements, spices and certain medications such as Metformin and even simple aspirin can prolong pro long doubling time.
Lignans! The blended drink I make which contains seeds has many lignans opened by the blender's blades!
The UCSF diet didn't take lignans into consideration.
No mention of black pepper and bromelain to increase absorption.
As for debate, there are many articles and studies in support of that which I speak of because reading them is where I learned. Studies and observations by doctors and scientists that aren't beginning their research but are well into it. I wouldn't hitch my wagon, or my prostate, to a neophyte.
Broccoli sprouts are much more effective in killing cancer than the florets.
Don't think a petri dish is the basis and end point. Some of the prostate cancer studies are sort of a hybrid in vivo, in vitro. Subjects are given a diet, a supplement and then their blood is drawn. The blood is drizzled on prostate cancer cells cultivated in petri dishes.
You will enjoy reading about this lady if you haven't.
Dr. Ruth Heidrich, breast cancer, metastases to ribs. Surgery was the only treatment she had. She found an add in a little neighborhood type of paper by Dr. John McDougall recruiting breast cancer patients to a vegan protocol to heal rather than chemo and radiation.
DR. RUTH: A LIVING LEGEND Already a marathoner, she was unbelievably diagnosed with Stage 4 Breast Cancer! With Dr. John McDougall's help, she refused chemo, radiation, & hormone blockers and went vegan. The results of the dietary change were so powerful that, not only did she beat the cancer, she then added biking, and swimming.
Your immune system begins in your bone marrow.
Your liver needs to function optimally when fighting disease. Diet and supplements can restore it to functioning properly.
Running and her diet? She was already a runner when diagnosed. Did the diet combined with her running "clean" out her body and strengthen her immune system? She is now in her 80's. That diet is hard to do.
The Japanese have been prescribing PSK for decades for chemo patients to boost the patient's immune system. Polysaccharide K is Turkey Tail mushroom. Not much money in dried mushrooms.
Good thoughts currowpaw. I do all the things you mentioned, all of them. The only bad thing is that the naturooaths say they have the least amount of success with people who already had radiation and chemo so I'm climbing a steeper hill. Nonetheless, I'll keep trying to do the best i can.
Well we know via clinical trials that adding either early to Lupron has huge advantages to extending life. No comparison yet which is better. Seems like less SE with Zytega.
Because i have coronary artery disease and zytiga increases risk of heat events. Plus, there haven't been any studies that show whether using zytiga and lupron simultaneously is not effective than subsequently also quality of life in zytiga is very poor for many.
Intermittent Lupron outcomes are almost the same as steady Lupron injections in most studies. That said taking a break, even a small one, between shots gives the body and the mind a little bit of time to heal. Quality of life issues such as fatigue and muscle weakness can be addressed. You can even have a little sex if your nerves have been spared.
Intermittent is working well if you have one or more months before your PSA rises past the point you or your care giver feel comfortable with. During this period diet, exercise, and the appropriate vitamins and minerals needed to rebuild your strength are very important. One should always consider taking anything that helps build immunity.
Sooner or later we will find the right genes to engineer and then this disease will become treatable. Krisper techniques are improving and T-cell targeting is improving daily. Till then we are all looking to prolong our lives any way we can. One of the best ways to improve the effectiveness of Lupron is to take a small amount of prednisone while you are on it. I take .5 mg. twice daily. My nerve sparing procedure was in 98 and I have been on Lupron for more than ten years. Never give up hope!
Good comments. The part about the Prednisone is something new to me. I know it's used with zytiga but didn't know about it being used work lupron alone. In what way does it improve things, and how do you get it prescribed without the zytiga? Does it have side effects?
Small dose prednisone, .5 twice daily, is well known to most oncologists. It reduces PSA which means it fights cancer. It has been in common use since 1989...
The benefits are the same as mentioned in the initial study. It is of more use in intermittent ADT than in steady therapy and depending on your response can prolong your intermittent periods.
You have to remember that many oncologists don’t like intermittent therapy. They don’t trust their patients to test for PSA monthly and report for a shot. It’s defensive medicine on their part. They all expect bad outcomes to result in lawsuits. Likewise many fear their patients will stop taking Prednisone abruptly which has risks of its own. As far as I’m concerned Prednisone has worked for me.
Not sure you ever got a straight answer to your question. Although not nearly as well read as some men here, it seems to me that, as Tall_Allen suggested, the evidence that diet, supplements, etc., will improve or prolong one's life is scant indeed. And, testimonials don't mean squat scientifically.
Btw, I changed (hopefully improved) my diet and I exercise almost everyday. Do I think any of this is really going to make any kind of difference "in the long run"? Nope. BUT, it does make me feel like I'm doing SOMETHING; that I am somehow in control; that I feel better psychologically. And, THAT, I think is important.
I was only "on" Lupron for 9 months (plus one month of Firmagon). Truly, a poster child for its nasty side effects. But, I remain hopeful that the side effects will decrease over time (apparently a LONG ASS time). Meanwhile, I'll continue with the exercise and some supplements (that aren't doing any harm) AND, most importantly, try to live fully. As in, do it NOW.
Good comments. Another thing to think about with supplements is that thereare many studies that prove that supplements help fighting the cancer but the question is is your skin cancer at a point where it's much stronger than it was before you had any treatment. Therefore let someone might be doing now may not make much of a difference but if you would done it five years before you got cancer might have made a huge difference. none the less you could do about 10 different things that are supposed to help you like make a little bit of a difference and it keeps you focused on healthy living. If I listen to everybody it said just eat whatever you want one time won't hurt you then I'd be doing it almost every day so you have to ignore those comments from people.
I switched to a Mediterranean diet and exercise daily but I do it to help offset the SE’s of being on prolonged ADT. I feel better and staying in shape and maintaining muscle tone and bone health and allows me to better enjoy the things I like doing. I also feel that living a healthy lifestyle and staying physically active and fit allows my body to better “fight the fight”.
Not sure if it’s doing anything to hold back my cancer but hopefully it’s helping my body to deal with some of the harsh meds that are.
Great job.....I do crazy shit and wake up feeling like a million....I am about to hit the peloton for my 45 min ride this week. I have to be careful not to ride so much that I get overuse syndrome...mostly ITB tightness and leg fatigue....Lift and play......jogging with my dog is for her these days as the Peloton has taken over...Having that coach ride with you makes all the difference in the world....not like a treadmill and TV set....My PSA hovers around 2 to 4 been on Xtandi/Lupron for one year...still not Met...good diet....fly ....We all need to hold out and keep out heads up....Blue Skies. Sky King and Penny (woof)
yes I did ....it lasted 19 months,(Lupron alone) I had 34 proton sessions at MD Anderson and they went well...tumors cleared up but my psa went from .2 to .8 and continued to climb.....Currently at Duke because I can jump in my plane and make the trip in one day...once Clinical Trials are indicated I will go on a nationwide hunt to find the best one suited for me....however between MDA and Duke I have a shot at staying in the South....Blue Skies, Sky King and Penny (woof) Not really confined to the USA either...but we will see....
How long was it after the proton before the psa started rising again? Did you do the proton before or after the Lupron? Do you rely on a medical oncologist to tell you what clinical trials you are eligible for or do you try looking them up on a website? Do you see any other departments at Duke other than an MO?
It doubles every 3-4 weeks but that's not take the point of my question. It's a generic question pertaining to everyone, regardless of their doubling time.
In reply to your original question: PSADT is probably the best parameter we have to monitor whether or not a particular regimen is actually working. So when you try something new, whatever it may be, while you are off Lupron and you again have a short (rapid) PSA doubling time, then that shows that the regimen is not working for you and it is time to look elsewhere. However you are happily very responsive to Lupron. And the evidence does suggest that intermittent ADT is "not inferior" to continuous. Indeed adding abiraterone to Lupron is superior for survival. The added side effects, cost and impact on QOL are all real considerations in that decision.
As usual, I agree with TA. I also liked the replies from BillyBoy and EdinBmore.
IMHO, There is no, none, zip, nada reliable evidence anywhere that going on a specific or highly restrictive diet, or taking any supplement, definitely stops or slows advanced PCa in the majority of those of us who are Stage 4. Different things work for different people.
Testimonials, even those that sound authoritative, are unsubstantiated crap. They are usually based on the experience of one person (or a few). Some of them are just trying to sell you snake oil.
Having said that, I still take Metformin. I’m a Type 2 diabetic, so I can justify it on that basis. If it helps keep my cancer in check, well that would be a big bonus. If not, at least it’s helping my blood sugar issues. I also take sulphoraphane (BroccoMax)...have no idea if it does anything. But it’s cheap, and the most likely supplement to provide any benefit whatsoever. There’s a whole laundry list of other supplements that evidence has shown to be either ineffective, or have such low bioavailability in non-toxic doses that they won’t help you, and amount to basically flushing your money 💵 down the crapper🚽.
I have yet to see any conclusive evidence, or results from a large scale clinical trial that definitively proves that going vegan, or any other highly restrictive diet, will add a year, or a month, or even a day to your life. If you can handle it, and it makes you feel good, and it improves your perceived QOL, then by all means go for it. If passing on an occasional steak is torture for you, don’t go on it. That once in awhile treat isn’t going to kill you. Just be smart about what you eat. I once asked my M.O., Dr. Tan, at the Mayo Clinic in Jax about going on a restrictive diet. His response was “maybe you could try something like the Mediterranean Diet.” He didn’t say, “you must go vegan, or totally give up red meat or dairy products, etc., etc.
In reference to PSA doubling time, he said that while PSA increase is always a factor in determining treatment options, at this point (on the edge of becoming castrate resistant), they look equally at the appearance of and changes in symptoms, and other factors, to determine what changes in treatment, which drugs and procedures, are likely to be beneficial.
For those of us on the Stage 4 train, our clocks are ticking a little faster than for healthy people. But before you chug-a-lug a liter bottle of pricey (and sugary) pomegranate juice, or spend a fortune on a worthless supplement, do your research. Don’t buy into the hype, or a rah-rah You Tube testimonial. Be smart and informed about not only your treatment decisions, but also your diet, supplement, and exercise decisions. Most importantly, do things that make you happy (I choose golf 🏌️⛳️😎). Appreciate all of the wondrous gifts God has put in your life...your significant other, your friends, family, pets (they’re family, too), and nature. There’s only so much you can do to extend your lifespan, but a lot you can do to make that time meaningful and enjoyable. In one of his last interviews, David Letterman asked Warren Zevon if he had any sage advice in dealing with his mortality. Zevon replied, “enjoy every sandwich and every minute.” He meant that sandwich to be a metaphor for all of the good things in life we all too often take for granted.
End of sermon. Remember, everything I say is a lie and that’s the truth. 😉. Mark
Good thoughts, for to coronary artery disease my Dr is thinking nubeqa will be added when the lupron stops working solely. God, exercise and dirt are critical to mood. If i don't have exercise and either green tea matcha powdet or coffee then my not is bad. Those things make it good for several hours.
PSA doubling time is the metric your oncologists are using. For them, it is the "end all" as there is no other. One of the speakers at the recent Detroit Conference gave a great metaphor: "Prostate Cancer is not a corn field; cancer is a meadow." That is brilliant, especially for a mid-Western audience. PCa is not one disease, but many. Cell lines are different and respond differently to different treatments. I would not want to pin all my hopes on supplements and exercise in the face of clear evidence that the cancer is mean and aggressive. "In God we trust; all others pay cash."
Good reference to the meodow. I don't pin only in the everybody good and supplements. I use that for quality of life and to augment the cancer medicine. Thanks
that's what I'm thinking. It just seems like I have a new problem every six months, knees, back, stomach, now back once more (but bone scan and ct showed no mets on the spine so bone density test in a few weeks.
Exactly--a different cancer, it's aggressiveness in a different host with a different response.
Factors.
Not pinning all hopes on supplements and diet? One certainly shouldn't have bacon and eggs for breakfast, an Italian sub with processed meats for lunch and a charred steak for dinner with mashed potato --the salad--had one last week. Got any ice cream?
As I pointed out earlier in another response--even the lowly aspirin prevents metastases--which is well documented.
There are too many studies published with headings that have acronyms such as NCI and NIH and so on that have found certain foods, spices, medications and supps suppress or kill cancer, well, I am not going to refute studies such as the latest about capsaicin and many others that are well documented.
Granted--these won't work for everyone--but let us put those failures in a proper context--which is--do the heavy duty meds and treatments of conventional medicine work for everyone? Chemo failures? Prostatectomy failures? Radiation failures? ADT failures? Yet we hold a spice, a food or a supplement to a higher standard? Without thinking outside the box as the Japanese have at times done as is evidenced by their innovative use of PSK to strengthen a patient's immune system that is receiving chemo treatments--not much money in dried mushrooms!
No disagreement. I wrote to him directly about the benefits of a heart-healthy diet and of exercise. And, yes, not enough is said about the eventual failure of the mainstay drugs.
While I understand the quality of life impacts of continuous Lupron use ( personal 7 years experience ) I would stay on Lupron continuously . Just because of 1 study showed intermittent ADT as good as continuos ADT your experience appears that you are an outlier to those statistics . Some of these studies have been inconclusive to determine increased efficacy . What study are you referencing ? Fight on warrior ! Good luck on your decision
So you think keeping the psa as low as possible will work better than letting it off there mat for a while and then wrestling it down again to keep it confused. I suppose it's all a guessing game. One thing i know is that in happier when not on lupron. I only know of that one comparison study from a few years ago. I asked the doctor why there was a slight difference between staying on and getting off of it he said because the people that were taking a break sometimes it didn't come back to the doctor quickly enough or something along those lines and it got out of control and spread so I assume that if I just kept it under a certain PSA essentially under control and then started the lupron again. At least give me you know 6 months at a time so I guess like I said for it's a guessing game if yours last 7 years that's an anomaly that's a lot more than the average which is great I'm happy to hear that for you I do have a question though what was you're doubling time when you're not on it?
Never off it - my doubling time was 4 months while on Lupron . Lupron plus Bicalutamide has kept me undetectable for 2 1/2 years . I’ve had 2 patients as a home physical therapist who opted
intermittent ADT and when it got out of the bag it took off . Just my opinion and very little observation . -not recommending any course of action on your part . Intermittent ADT not for me , not with a heavy metastatic load and a GS 9 ( 5+ 4 ) . Peace
thanks for your info. I'll talk to my doc about the casodex. I've spoken to others who used it too. I think it was something snuffy Myers recommended as well. I'm happy to hear that it's working so well for you. I hope it keeps working for many years.
I had a similar problem albeit doubling every two months while on ADT vacation. IMHO diet and supplements have nothing to do with cancer control. But diet is great for losing weight to control cardiovascular risk and other obesity related ailments . I lost 50 lbs recently.
As I found out, if you have a short ADT vacation due to fast PSA DT then intermittent ADT is not for you. I switched to estradiol patches in order to comfortably ( few side effects) stay on systemic therapy full time.
This is somewhat off topic (or is it) but I have heard of PCa patients / survivors with very HI PSA numbers that function 'normally' without treatment. One man I know has been over 1,000 for years and does nothing about it. He's not alone.
However, I'm not suggesting that it is meaningless, either.
It is one of several factors that make variable approaches to treatment and/or surveillance protocols.
One thing I do know - there is no consensus on treatment(s).
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PSA Doubling Time
Adding docetaxel for BCR CSPC at 3-mo doubling rate
Could my psa variations be a result of lab errors ?
