My husband 52 was diagnosed with PCa in April 2018, Gleason 9. He opted for RP which was carried out in June 2018. Whilst surgical margins and all 29 lymph nodes were clear there was SVI and ECE involvement. I am happy to say all PSA results since surgery have been <0.008 which I believe is what they term ‘undetectable’. However with the above stats I imagine it is only a matter of time before BCR. So my question is, what would you recommend to stop / slow progression of this disease? I have read so much about supplements, diet etc and all seem to work wonderfully in mice but I have yet to see a study that is conclusive in humans. He regularly has pomegranate juice, green tea, turmeric etc, avoids dairy and eggs but weighing up QOL with quantity of life it is unrealistic for him to adopt a vegan, no alcohol lifestyle which would make him feel like a patient everyday. I can’t see that diet alone has ever stopped progression of this disease anyway so what are the options, what would you do given his situation?
Advice for stopping/slowing PCa progr... - Advanced Prostate...
Advice for stopping/slowing PCa progression.
I agree with you -- lucky mice! Supplements have not been evaluated in human beings for safety and efficacy, and you have no idea what's really in the bottle. Both green tea extract and pomegranate juice have PROVEN to have no efficacy in humans (in randomized clinical trials (RCTs)), and the liver clears curcumin out of the body in minutes. None have shown any promise in safely reducing the risk of a BCR in humans, with the possible exception of sulforaphane (in a small RCT). I also agree with you about vegan diets - there is just no clinical evidence that it is of any benefit for prostate cancer.
There is no diet that trials have proven that it will fight cancer. The most likely one, however, is probably the Mediterranean diet. I would say this diet has to include sufficient amounts of red wine
Or e.g. this review: "However, Mediterranean eating pattern after diagnosis of nonmetastatic cancer was associated with lower overall mortality. "
researchgate.net/publicatio...
ncbi.nlm.nih.gov/pmc/articl...
Funny there was an article on the news last night that was touting the Mediterranean diet is optimal for preventing all sorts of ills not just heart attacks etc. I’m from Europe originally so we already have many of these things as our standard diet, particularly the red wine!
My medonc always watched for a clear rise in PSA (sudden jump or several rises in a row), then put me back on ADT—until finally ADT just became permanent.
The National Cancer Institute has produced a summary on "Prostate Cancer, Nutrition, and Dietary Supplements". For the "patient version" of the summary, see: cancer.gov/about-cancer/tre... that version was last updated in October 31, 2017. There is also a "health professional version" that has more technical data and was updated more recently (August 16, 2018). Click on "Go to Health Professional Version" just under the title to see that version.
I also like the postings by Patrick O'Shea (pjoshea13). You can find them by searching for "Foods/Supplements-Vitamins" here on healthunlocked. Patrick is wide ranging in his research, looking at lots of different dietary products and he sometimes gives suggestions for brand names that are very helpful. I don't know his research background but it's obvious to me that he knows a hell of a lot.
I have some hesitancy in saying this, but in addition to all of that, I have read and heard from some experts that radiation treatment, once the patient heals from surgery, increases the long term survival of men with Gleason 9 cancers (on average) - even when given before seeing any increase in PSA after surgery. The reason for my hesitancy is that radiation is a very invasive treatment and it produces side effects. I expect that a lot of doctors would say that there's no reason to risk the side effects unless there is evidence of cancer recurrence. They have a point. I don't have enough expertise to argue one way or the other, but it's something that might be worth researching.
I wish you the best.
Alan
Thanks Alan. I too have researched the benefit of salvage radiation prior to BCR but given my husbands young age and potential for causing other cancers down the track it seems the advice is to wait for a rise. There just isn’t strong enough evidence that it really will provide a survival benefit by doing it now. I suppose with ultra sensitive PSA testing we have now you could make a decision about SRT well before reaching PSA of 0.2.
Thanks for your very detailed response I also agree that the Cells are there somewhere and it would make sense to me to try and get them before they take hold again. I’m not sure why further threatment is given only with reoccurrence or rising PSA when you then spend the rest of your life chasing it. Why not target those cells before they have chance to find a new home and set up camp. Or maybe you can’t kill cancer cells in a dormant state. I don’t have enough understanding on the subject so could be stilling rubbish. We have a 10 year old son and with a dad (diagnosed 52), grandfather (died of PCa at 68)and great grandfather died from PCa I’m hoping they find that silver bullet in the next 40 years! How long have you remained undetectable?
So my question is, what would you recommend to stop / slow progression of this disease?
I am new to this journey and like you have an interest in actions that I can take to slow the progression. My thinking is that we should present at the Clinic in as good shape as we can. In other words don't show up Obese, smoking 20 a day and holding a quarter pounder in your hand.
I think you could do certain things which can only assist mentally and physically.
I have no medical training, these are what I am doing to help myself.
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1; Get your BMI to within a healthy range.
nhlbi.nih.gov/health/educat...
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2; Exercise to maintain general physical fitness. (10,000 steps a day buy a $100 "fitbit")
Recent findings Exercise has been shown to be safe, feasible and effective for advanced prostate cancer patients, inclusive of patients with bone metastases; a previously excluded population due to patient and clinician fear of adverse events.
journals.lww.com/co-support...
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3; Muscle resistance training to maintain Muscle mass.
4; Eat a healthy diet (Mediterranean diet seems balanced)
5; Buy "Charles Snuffy Meyers Book" and read everything on this site
He is a prostate cancer specialist, has been surviving Stage 4 PCa for 20 years.
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Learn all you can, Filter the BS and form your own opinion.
These are my top 5, they are very cheap BUT also the hardest things YOU will have to DO.
They should have a common sense approval from nearly everyone.
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The next 4 can be expensive or hard to attain, they also involve a subjective opinion.
6; Get the best medical team around you, all disciplines including your GP.
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7; With the advice of the smart people on this site, get your GP to put you on Metformin
ncbi.nlm.nih.gov/pmc/articl...
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8; a Statin and
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9; possibly an NSAID Indomethacin.
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The next point is the most highly divisive. There are very smart people who treat this topic like a political or religious belief. As I said earlier, have your BS filter turned on.
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10; supplements
There HAVE been phase 3 trials for supplements which slowed progression in cancer cells.
10.1; Vitamin D (seems to be considered a hormone rather than a vitamin)
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youtube.com/watch?v=QrU1yrm...
_
Grand Rounds in Urology
Published on Feb 16, 2017
Dr. Thomas E. Keane presented “Vitamin D and Prostate Cancer” at the 6th Symposium on the Treatment of Prostate Cancer (STOP-6), which was held in Lisbon, Portugal between October 14th and 16th 2016.
youtube.com/watch?v=IyPTNpj...
10.2; POMI-T
Pomi-T® combines broccoli, turmeric, green tea, and pomegranate
Professor Robert Thomas is a Consultant Oncologist at the Primrose Oncology Unit, Bedford and Addenbrooke’s, Hospitals specialising in Breast, Skin, Colorectal and Prostate cancer. He is professor of Biological and Exercise Science at Coventry University, a Senior Clinical Tutor Cambridge University and a visiting Professor at the University of Bedfordshire. He is medical advisor for the lifestyle and cancer website Cancernet.co.uk.
Although still embracing mainstream oncology research, he has an academic interest in the evaluation of nutritional, lifestyle and self help strategies after cancer and has published over 100 peer reviewed scientific papers. He has designed and numerous UK RCT’s including the worlds largest evaluation of a polyphenol rich nutritional supplement in men with prostate cancer (Pomi-T study).
youtube.com/watch?v=T9xX29q...
and
ncbi.nlm.nih.gov/pmc/articl...
Again I note; I have no medical training, just someone trying to find my way through the maze, good luck
Wow thanks that is a lot of information right there and I might need a couple of hours child free time and a cup of tea to digest all of that 😳! Luckily my husband has youth on his side is generally healthy and exercises everyday anyway, is a non smoker, has a reasonably healthy diet etc. We have 2 young children who keep us both fairly active. Just one question regarding the above, I thought metformin was used in conjunction with ADT, are you suggesting it could be taken while PSA is still undetectable as a preventative measure?
Tonik25,
I would not suggest that your husband take any medication.
I have no medical background.
Your medical team will put you on a standard of care treatment.
For most people that is fine. These are the experts you have chosen and follow their guidance to the letter. That is what I am doing.
.
IF you want to be an advocate for yourself, take from the smart people on this site, read extensively about PCA and help yourself in any way you can WITHOUT affecting your treatments. Keep your medical team informed of everything you do.
.
There are trials ongoing right now that are leading edge. Most of these we will never get on. They are very expensive drugs and treatments. They are out of reach for most people. If you get on one! it will exclude you from many others.
.
There are also trials that are repurposing old medicines like Metformin, Statins and Gout treatments that we can obtain from our GP. If at some stage in your treatments you feel you would like to discuss these with the team, you will be better informed for that conversation.
Thanks yes understand completely. The messsge is get informed and get the best medical team you can. I’ve been talking to Dr Joshua who is running a trial here in Australia with two common drugs with surprising results especially when coupled with ADT. You need a rising PSA to take part though which is something we are hoping to avoid! I am following many of the trials with interest.
Perhaps you could give details of DR Joshua's Aussie trials. I live in Sydney and am have been in remission from localised PCa for 5 years. My brother is Stage 4 and may be interested in local trials.
Hi Alan, this is the link to an article about the trial, the contact number is at the bottom of the article.
9news.com.au/2018/12/26/17/...
I know the link says testicular cancer but the article is about the prostate cancer trial.
3 years undetectable is fantastic, here is to many more years of that. I look forward to reading your theories once you present them. I have become fascinated with the subject so read this forum with much interest.
G'day mate.
Me thinks 'fish and chips' from a Greek establishment, followed by two scoops of chocolate chip ice cream (kids only one scoop each) will fill the bill.
Live and Laugh your arse off as often as you can.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 12/30/2018 1:37 AM EST
A study at the University of Wisconsin reported last summer showed that adding Metformin to Zytiga had a beneficial affect on survival rates. Ask your MO too check out the study as some of them might not yet be aware of it.
I applaud you for being so proactive and conducting as much research as you can to help your husband in his journey. Based on his family history, has anyone suggested genetic testing? I had a test (from color.com) recommended to me by a MO at Presbyterian, after our initial hour long meeting where he told me that he was impressed with all the research I had done except for genetic testing possibilities.
I did initially try using Foundation Medicine for tissue samples from my initial biopsy in June 2018, but there was insufficient tissue for them to process their 400 gene test. The Color cancer genetic test, which is simply providing a saliva sample in a tube and mailing it to the lab, resulted in me being diagnosed positive for the BRCA2 genetic defect. My older daughter did follow through with the test, and unfortunately she is also BRCA2 positive. She has proactively enrolled in MSK's RISE program to be regularly monitored.
The use of a PARP inhibitor (i.e. Olaparib, Rucaparib) will most probably be in my future once I become castrate resistant. There are very encouraging clinical trial results for this type of therapy for BRCA2 positive PC patients. Last week I met with Dr Susan Domchek at UPenn Abramson Cancer Center, who is one of the top researchers/Oncologists in the country for BRCA mutations in both men and women. PARP inhibitors, as appropriate, definitely need to be considered as a treatment option.
For now, after several months on ADT and then RP on Nov 14 as part of the SIMCAP clinical trial, I am responding well and will continue on with ADT. I will be following up with my doctors about adding a statin and Metformin, as there are recent studies that show benefit, as well as a good amount of discussion on this forum.
Best of luck. Keep up the research, and keep asking questions. Knowledge is power.
Thanks for all the information. I am really keen to explore genetic testing, I’m not sure where it is available in Australia, I will be checking with our GP to see what the options are. Our children are young so I can’t imagine we would be testing them until much further down the track but i believe knowing genetic causes of this disease can provide the potential for more targeted therapies.
I’m Gleason 9 with SVI and ECE as well. I had fast bcr and then SRT plus ADT. Sooner or later it’s likely to be your next step.
I’m sorry to hear BCR was so soon for you, how long did you remain undetectable? Did you have RP or radiation as your primary treatment?
See my profile; my history is all laid out. I was never undetectable after RP. Went from .1 to .2 to .3 then I had SRT. It’s gone undetectable when on ADT then rises when I went off ADT. So I’m still castrate sensitive thank goodness.
Bob
Three years is great!
What are your medications and supplements?
Sure appreciate your postings....
Any comments on Beta Glucan. Really great write ups on it. especially Beta 3 Glucan.
I personally have long believed that a PCa(very high risk 13 years now) and most but not all all cancers are never cured. They will go into long term remissions but are relentless and BCR’s are inevitable unless the patient expires from a competing morbidity or accident or other cause of death.
PCa survival can be very deceptive compared to other cancers because of its inherently slow doubling time which in the past I have read is some 400 days. Some 6 years ago I was diagnosed with early NSCLC that was treated by orthoscopic surgery. 6 years later I am deemed cured,,,only because lung cancers very rapidly progression and if no recurrence at 6 years,,,it is possible/likely it was all surgically removed before stestemic metastasis had occurred.
Published PCa statistical cure rates are extremely deceptive and disengenious imo because one can have anyone of a myriad of therapies and be deemed cured, when in fact the patient was not cured, as PCa is normally a disease of older men who are much more likely to die from a cardio, diabetic, car accident or some other event before PCa would eventually and inevitably recur and expire the patient.
Given all this, it not suggested to not submit to all available medical technologies to slow the progression to the point where one of these competing morbidities can be listed as cause of death.
I have often thought of PCa as a mother lode of gold located somewhere in the high Sierra mountains. Thru forces of nature this mother lode is slowly eroded and eventually finds its way down the rivers and streams and one day in 1849 gold dust and nuggets ar discovered in at Sutter’s Mill in Calyfornua.
A cancer tumor, once a cell has develop the ability to metastasize and has been growing and doubling for many years in the prostate until large enough to be incidentally caught in a biopsy, to me is like that mother lode of gold. Over let’s say 20 years from when a single cell goes rogue and becomes a cancer,,,for all these years, blood and lymphatic fluids have been washing over it and small flecks of fully cancerous tumor have been spread and deposited thruout the body,,,,each fleck having the ability to begin dividing too in to a full fledged tumor,,,and of course with mutations occurring at times as cells do when the divide.
So you have destroyed the mother lode, but what of all these millions/billions of cells that have been spawned and themselves are quietly doing whatever sleeping or snoozing cells before they awaken to perform their havoc.
Given all this and other reasons,,,some valid, others perhaps not so much, is why I chose early on not to submit to any treatment 13 years ago when first diagnosed. I have compiled quite a list. More than one of my fellow travelers and Physicians have suggested and old adage that I was whistling past the graveyard.
I would often say to myself, I will not treat this until I see the whites of its eyes. Well last year that finally occurred. However I had 12 years where my QOL was not compromised one iota and I lived just as though never diagnosed.
I certainly do not urge anyone to subscribe to what I believe or my strategy in dealing with this horrible disease. Howeve will note in passing that if not for being diagnosed with PCa and the way that I have dealt with it,,,,I would never had caught my lung cancer at a time early enough to be apparently likely successfully treated. There is no watchful waiting allowed on some cancers.
Hopefully I will catch your thoughts when posted.
I have seen almost no information on this topic over the the 13 years since my diagnoses. Almost as a verboten subject that no one cares to address or see in print.
I too have many other musings on this topic and how trials and studies outcomes often present a distortion of fact. Often wonder how they ever gain publication to professional journals given the data and information that is omitted or inaccurate.
At 52, I had a gleason score of 9. I did not change my diet and went on with my life like before I got the disease. That was 10 years ago. I'm 62 and still battling. The best medicine is a strong mind and keep active. Don't try being a health nut now and doing a 180, but I will say everybody has a differnt DNA and what works for me might not work for you.
again, be careful and wait for some clinical trials results: "Copper is acting on different molecular pathways leading to a proangiogenic response necessary for carcinogenesis processes. It appears that copper also influences the spread and formation of secondary tumors via the activation of enzymes responsible for cell proliferation."
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