I was wondering when started ADT and what was the threshold and/or symptoms that made you decide to start? As a little background, I was diagnosed back in June 2008 with Gleason 8 - my PSA was about 4 at the time but had risen quickly. I had robotic surgery in Sept. 2008. Small encapsular extension and a bit of SVI on the right side. No bones or nodes or soft tissue. PSA was around 0.1 for 2 months. It never went down below that. I then transferred to Sloan for a second opinion. They read the slides and said Gleason 9 and because of that I should do IMRT with 6 months of ADT. I did that. PSA undetectable for 2 years. Then the slow creep. I went to see Dr. Snuffy Myers at that time. I went as Vegan as I could (I cheat now and then but in general am pretty good). So now here we are. The PSA has crept up to 2.4. PSADT has been around 1.5 years the entire time. I had a Choline scan 3 years ago and it found nothing. I had a PSMA last year and it found nothing. All along I have had full body MRIs which do not show any progress. I just had a PSMA last month that showed 2 spots with "Minimal Avidity (1.5) and Possibly active PC". hey wanted me to start immediately on ADT + Apilutimide as a trial came back showing this extends life. My PSA was 2.4 the end of August and then I went on a really strict diet and in Dec. my PSA had dropped to 1.8. I asked to put it off until my next appointment in Feb. Now my daughter is getting married in August and I really want to put it off until after the wedding. Am I crazy? Is this really shorting my life by waiting that long? When did you all start ADT? How long did you wait? Thanks so much for any advise or examples of what you did.
When to start ADT for metastatic disease - Advanced Prostate...
When to start ADT for metastatic disease
You ask: "Is this really shorting my life by waiting that long?"
Which made me think of a paper from Dec 16 :
"One third (33%) of participants believed treatment was at least a little likely to cure their metastatic cancer. Most participants believed treatment could provide symptom relief (76%) and extend life expectancy (95%)."
"A large proportion of patients with metastatic prostate cancer reported beliefs inconsistent with understanding that treatment was not curative."
I have resisted ADT in the past because (a) I was not in need of palliation, (b) the mean time to resistance is short, compared to my life expectancy, & (c) treatment emergent mutations are harder to manage. Why start before you need it, when it will accelerate the appearance of CRPC?
I know that many here will disagree & I'm bracing myself for a robust reaction.
To answer your question, I do not believe that inaction at present will shorten your life.
Thanks for the reply. Since the doctor mentioned the latest clinical trial that compared ADT vs. ADT +Apilutimide showed good extension of life, I asked the doctor for the info on the old clinical trials that showed ADT vs. Placebo from way back when. He said that would be unethical to do a trial like that. Where is the proof? So my feeling is that as long as the doubling time is still 1.5 years there is no proof that ADT vs nothing will extend life.
Reaction to inaction. Ok I was still am reluctant to continue on repeat ADT Lupron 90 day shots in exterior posterior. But I AM continuing on since re-start 09/10/2019. I’m gonna remember that 1st Lupron injection so vividly. S.E.’s S.E.’s they did not happen. So I’m on my 2nd 90 day inj 12/10 and loving it😎.
Not happy taking Abiraterone acetate + prednisone daily though.
I’m thinking if doing my own PSA lab test this week to see my progression or PSA regression or ?
Not happy on ADT Or Zytiga but like that commercial says. DO IT!
Fully agree with Patrick on this. Dont let your fear control you. I would say ..implement Dr Myers natural protocol more vigorouly...hopefully you will not need ADT for long time. Your long PSA doubling time is the proof that these cancer cells are turtles and not tigers. And turtles do not become tigers overnight.
I know from direct experience with him that Dr. Samuel Denmeade at Hopkins agrees with you. Check his credentials to help evaluate his opinion.
Thanks. This is all great into. Dr. Myers was not against conventional treatment he just understood that many things actually do make a difference. I will look Dr. Denmeade up.
Based solely on a little logic and not on any knowledge or experience, I suggest the following answer to your question.
Disease progression in the early stages is slower, then for many (but not all!) men, some random mutations occur that cause an accelerated progression. The absolute ideal would be to start ADT just before such mutations might occur and manage to prevent or delay those mutations. But there's a problem. We don't know whether or when such mutations will occur. The time will be different for different men and even two identical men with identical disease (if there is such a thing) might experience mutations randomly at different times. Therefore there's no way to know when to start.
I think that the larger the number of tumor cells in your body (PSA is usually the best available measure), the more likely it is that one or more of them will get a nasty mutation and start to rapidly divide and multiply. So whatever you can do to hold down the tumor population (shown by PSA), the longer you can get away without ADT. You have found a diet that helped. You might also get benefit from exercise and from various vitamins and supplements. See for example: cancer.gov/about-cancer/tre... or the non-technical version: cancer.gov/about-cancer/tre... Search this site for postings on supplements for less well established, but still sometimes useful ideas. Hint, pjoshea13 and Nalakrats are both knowledgeable about the science and have made many postings in this area.
It also makes sense to have a regular schedule of PSA tests (maybe quarterly?) so that if PSA numbers start to accelerate upward you'll get early warning.
I've also wondered about the viability of immunotherapeutic treatments like Provenge for people like you with very slowly rising PSA. Provenge is not effective against aggressive disease but may be strong enough to have a good effect on slowly accumulating disease.
I know that those thoughts aren't very expert but maybe they'll give you some useful ideas to think about.
Best of luck.
Good response but I would suggest getting into IHT right away, see what happens by getting mouthy psa tests, and if your lucky, you can come off after 3 or 4 months. The bad thing is your very high gleason score, this in and of itself supports taking as strong an action as you can as early as you can. Good luck.
IHT INTERMITTENT HORMONE THERAPY. It is simply going onto ADT drugs, single or in combo, for a period of time until the psa drops to its lowest point and stays for two months, then stopping the drugs until the psa rises again-the level to repeat the IHT is still a matter of debate, but with aggressive disease and a forcast of a longer life-ie in good health and not affected by other serious ailments, the harder you hit the cancer, the longer life you get.
There is no magic to this approach, but it only will work for as long as the prostate cancer strain that you have, is still hormone receptive. At some point, one will become hormone resistant, and this important step has to be ended and one keeps on with AHT including the next and last stage of drug options that one has.
The major problem with this approach is it requires more testing, i.e. more frequent psa testing, use of shorter lupron injection duration drugs-it costs much more to buy and get single 30 day injections than it does for the 3 or 6 month versions, and better monitoring if one is going full blast by use of combo approach which would include a three drug combo. The pill costs are not much more as one can still buy them and keep them for the next round, so no loss in that regard.
The major plus is you get a break for your body to recover between rounds and the negative impact on you is less. Again, this is not a cure but the last major weapon that could buy a lot of extra time for some-not all prostate cancer strains will react and cooperate but there is no downside to trying to buy extra time, if your medical program allows for these extra costs or will allow you to pay the difference.
The longer that you can keep pc cells hormone reactive, the better, for once they are hormone resistant, they have moved on to feed on other sources within your body, and it is change, that will eventually, sooner or later, lead to your demise, and for which most of the research money is focused upon fighting.
Remember, there is no cure for advanced prostate cancer, all that we can do is buy extra time. Again, live large, make up your own bucket list and rock on for as long as you are able.
The guidelines are based on CT/bone scan. The PSMA PET/CT is much more sensitive. It is not correct if two small mets can be detected on a PSMA PET/CT to treat you as if the bone scan did detect two bone mets. Therefore ADT + Apalutamide is overtreatment.
You will live just as long (I think) if you wait for the PSA to reach 4.0 and then do a PSMA PET/CT again and radiate the mets with SBRT. Otherwise you can choose bicalutamide monotherapy now, which has very low side effects, to keep the PSA value low.
I agree with this approach. The PSA rise is very slow and no detectable mets so I would use a minimalist approach, something like Bicalutamide monotherapy to start as GP24 suggests. See how that goes. You don't need to be a in rush, just manage this as long as you can with minimal side effects since that should be possible in this case.
By the way, how old are you?
This is exactly the recommendation that Sloan Kettering made to my husband last month - wait until his psa reaches 4 and repeat the psma scan. His psa is doubling every 3 months (last reading 1.73 in December), his last psma scan in sept showed 2 lymph nodes not avid enough to treat ( also they were already radiated so sbrt is not an option on those anyway, the RO said). No adt treatment yet because that would preclude the repeat scan. His MO is an intermittent adt guy and would not start him at all until his psa is 3. We are pretty nervous with this waiting. Thinking about getting an outside psma scan and looking at lu 177
My SBRT RO radiated my lymph nodes which were radiated a year before with SBRT already. So I expect you can get them radiated, even if your IMRT RO thinks it cannot be done. Just ask an SBRT RO and not the IMRT RO. A few ROs even re-irradiate with IMRT.
Try not to be nervous, when you start with ADT the PSA will go down again, even when it is above 10 ng/ml or more.
Thanks. His RO did both IMRT and SBRT, and says he already hit those nodes twice. I should maybe get a second opinion.
If they were radiated twice they should be controlled. Probably the next psma scan will show new nodes which cause the PSA value to rise.
Those 2 nodes showed up on the psma scan but not avid enough for the RO to believe they were indeed pca. But nothing else showed up, and with his risen psa 1.73, where else could it be?
"This is exactly the recommendation that Sloan Kettering made to my husband last month - wait until his psa reaches 4 and repeat the psma scan. "
After surgery and salvage radiation it does not matter if these nodes are radiated at a PSA value of 1.73 or 4.0 ng/ml or more. If they are PCa these nodes will be more avid on the next PSMA PET/CT at 4.0 and maybe additional, affected nodes can be seen. You will not radiate mets each time the PSA value gets above 1.0 ng/ml. These radiations typically just delay the progress by 9 to 12 months. I get six months of ADT after each radiation to avoid that the tumor progresses too quickly.
Where can you get the PSMA scan ?
There are several trials in the US,search on clinical trials.gov. Also can get it in Germany and Europe, not sure that’s a play right now with Coronavirus travel restrictions
That is my exact thought. If I had not pushed for a PSMA scan, the other MRI and regular CAT scans would not have shown anything and no reason quite yet to go on ADT. I have thought about just bicalutamide monotherapy as well. One other thing that is really important - I realize now that I did not mention in my first post. Beside a good diet I take a lot of herbals (Curcumin, Resveratrol, Ginger, Green Tea Extract, Grape Seed Extract, Alpha Lipoic Acid, Lycopene, Pomegranate extract, Soy Protein, Help Protein, Flax Seed, Fish Oil, Olive Oil ) as well as Aspirin, Metformin and a Statin.
I cannot tell if these herbals are the right combination. I would not take Aspirin for an extended period of time, it can cause side effects. A friend of mine assumes that ALA masked his PSA value. So the cancer progressed while the PSA value did not.
I congratulate you for your natural anti cancer interventions...inspite of naysayers,,,these do help slow progression. The rumors about herbs and natural anticancer foods masking PSA is one of the biggest b*s propagated by some vested interests. What masking ? Guys... the cancer cells are DEAD and therefore they can not secrete PSA.. period !
If PSA is not a specific biomarker for extent of PCa..why all your researchers use it to prove efficacy of their new meds, chemo ,R T etc. When Enzalutamide lowers PSA they jump with cheers BUT when Turmeric lowers PSA ,..its masking ! Pure hypocricy.
your wrong, and again, please do not insult our scientific based researchers and cancer specialists. Most of the alternative supplements are nonsense and have NO supportable evidence.
Yes - I have read about this in many different articles. I have seen this effect in my own PSA tests. I keep a spreadsheet of what I am taking along with the blood test results. I have always "hoped" it was actually slowing the cancer down - and maybe there is a placebo effect if it is only just masking the PSA. But this points out a very important observation that nobody is going to do long term trials on this because it is so expensive and there is no money to be made.
Trials can be done even when there is no money to be made. Money can come from government sponsorship or cancer charities. Even the insurance industry is starting to sponsor trials, but in that case they do stand to make money if a cheaper alternative is found.
Don,t depend on govt of a capitalist country to finance such trials..its not their business.
These kinds of trials will be sponsored by govts of countries who have health care as human right .
well, I live in Canada pal, and our government spends little on research for prostate cancer, s compared to aids and even breast cancer. It is in fact a joke so better get your facts straight before you open your mouth and make FALSE statements.
As much as I hate the current processes in place around the world, my biggest objection to this is the fact that these research facilities do not share or work together very well, and for the obvious reason that there is a great deal of money to be made when the group who can sort it out, make PC a chronic or curable disease. I am angry that so much research money is lost for these facilities to each have their own lab and set up-which are huge costs, instead of setting up in several large centres, where they could be shared and the best of each type of testing equipment would be constantly available.
It will in fact, be privately funded research facilities that will make the break through. Some share government facilities and get grants etc. but the fact is that much of the funding does come from major medical organizations.
Tom...that's interesting. Doubts are being raised about cheaper meds where no big profit is possible..nothing new. \
What if someones PSA is going down but at the same time all other biomarkers ALP, Hb,LDH,Albumin, RDW, Calcium level ,excercise tolerance and so on ) are also improving with a re-puposed cheaper, older medication....will it still be considered "masking" ? BTW, this is what is happening in my case with anti cancer, antiinflammatory food, herbs and spices added to SOC
I am not here to propagate any particular point of view ..I am not a salesman for clinical trials, bIg pharma or supplement company. I am .just a human being with open mind to observe all possibilities.
I am happy I started this conversation. These are the things I think about all of the time. Everyone seems to agree that inflammation can cause prostate cancer and many other ailments. And anything that lessens inflammation is a good thing. The cancer cell micro-environment can effect how the cell grows. And so anything we can do to effect that micro-environment in a positive way can only help slow down the cancer as well as help boost the immune system.
Absolutely agree with you. Just like other entities of Onco-Industrial Complex have their agenda ...we should have our own agenda ..totally based on what is truly good for us (the patient) Our fear of death and suffering comes in the way of our clear thinking and good judgement. This fear is exploited by profiteers as when we are afraid we are vulnerable to manipulation. Antidote to fear is good information.
There is no doubt about inflammation being a fundamental cause of PCa and its very logical to use anti inflammatory food, herbs/spices which lower inflammation. My C reactive protein (best measure of inflammation) is now 0.3 ..best ever in my life dut to dietary changes. Also, we need to make our body hostile to cancer cells so they can not grow fast.
Out of curiosity, I looked up my C-reactive protein result. Last tested in June 2018, it's also 0.3. Body fat is a significant contributor to inflammation. I've lost 10 lbs since diagnosis, and I wasn't overweight to begin with. Have you lost weight as well?
Tom..that only says that you are doing something right ! I was 160 lbs before diagnosis and now I am 145 lbs. I walk 4 to 5 miles a day every single day and never eat junk food from outside. Everything made in our kitchen. No soda, no fruit juices. Only drinks i drink are water, black and Green tea. The day can not end without me eating one cruciferous veggy and drinking a a glass of tomato juice. I have lot of energy and feel happy most of the time. Besides I work 40 hours a week in a job that require full concentration. Also, no hotflashes ,just sometimes a wave of mild tiredness.
We should continue to compare notes, as we are similar in many ways with a few key differences. I dropped weight from mid 160s to low-to-mid 150s, run or walk 20-30 miles many weeks, though there are days with hardly any exercise at all. Had Chinese food for dinner last night, no soda or fruit juices, occasional V-8 juice, sugar and cream in my coffee, dark chocolate for a snack most nights, lots of chicken, cut way back on red meats, wife makes pizza with low-fat cheese, work full time as a software engineer. Hot flashes come and go. Some days I have manic energy, other days I nap very easily (particularly a week after Xgeva), but really that varying energy level is just a slight exaggeration of my old self.
I think that we have similaries...but some differences...I have never eaten any meat in my life. Never. Do not have a single family member in 3 generations with PCa.
I did not need any radiation, chemo or surgery as of today. Gleason Grade 3+4=7
Interestingly, my lipid profile has ne ver been better ...I have lab results to compare for last 30 years. ALP 59, AST 13, ALT 18, Hb14.7, Albumin 3.6, LDH 129, CRP0.3.
I watch all these parameters every 2 weeks...yes its hassle to get blood drawn every 2 weeks ..but i am doing it.
Didn’t some researchers recently say that chicken was bad also??
You have such discipline. Not even a glass of champagne on new year’s?
that is another false statement, as there are a number of causes of PC, and alot more not yet understood about the disease, but for you to say that it is because of inflammation is absurd. Inflammation of what I would ask?? Gee, study up man, because no matter how healthy you think you have become, this will NOT cure or prevent the spread of advanced prostate cancer, so stop with the lies and bs please. You are hurting those who come to this site for information directly relating to APC, not some kitchen cocktail you imagine will work.
Stop thinking conspiracy theories for a moment. The whole point of "masking" is that PSA stops being consistent with other indications of cancer (scans, symptoms, ALP, etc.)
I know of at least three ways to lower the result of a PSA test:
1) Kill cancer cells so there are fewer cells producing PSA (radiation, chemotherapy),
2) Stop the cancer cells from producing PSA, which may or may not be fatal to the cells, but usually corresponds with a slowed growth rate (ADT),
3) interfere with the PSA test itself by preventing reagents from reacting with PSA. In this case the cancer and PSA is actually there, but the test result is wrong. This last method is "masking".
If you only look at the PSA results, there's now way to determine which of these mechanisms led to the lower numbers. You need to look at symptoms, scans, other blood markers, etc. to get an accurate picture of what the cancer is actually doing.
Enzalutamide and Abiraterone were approved because they significantly prolonged overall survival in men compared to a control group, not because they lowered PSA.
If anti-inflammatory foods reduce your pain and allow you to exercise then you should eat them. We can argue if they are directly prolonging your life or merely allowing you to exercise and control your weight which in turn is prolonging your life.
Also interesting is this study of statins: onlinelibrary.wiley.com/doi..., which shows lower PSA among statin users but possibly worse outcomes due to delayed diagnosis caused by PSA masking.
There is no conspiracy theory...what I am proposing is "multipronged attack" I repeat my question: If all markers incl scans are moving in right direction along with decreasing PSA...will you still label it as "masking"?
No, of course not. But, you said "BTW, this is what is happening in my case with anti cancer, antiinflammatory food, herbs and spices added to SOC". Well I've not made the same dietary changes that you have, and yet I'm seeing all the same benefits. So maybe it's the standard of care that's causing all those benefits?
Back to the original post, when somebody asks about the benefits of ADT, those of us getting great results from Abiraterone can't say "I've had great results from diet and lifestyle changes".
show this over a period of time in a scientifically acceptable process, then if you are still alive and have no advancement of your advanced prostate cancer-that is what and for whom this site was set up to assist, then we will listen. Otherwise, you are just shovelling manure off the back of a truck-which would ok if it were only your life at stake, but each of these demented posts are hurting others.
What a cogent intelligent reply
Thanks. I have been taking a lot of heat on this site recently, but have been at this a long, long time, so have picked up a few words of wisdom.
I am only alive today because of having great research and cancer support docs, so feel I must do my part for my being so fortunate, and assist others thru the nightmare of their battle with advanced PC.
The dedicated research scientists some of whom are physicians deserve thanks from us who benefit
Have you read about the man who collaborated on Abiraterone?
Talk about such a contribution to mankind.
Your ideas are right on. It is so refreshing to read them.
So true Hirsch. Those of us who have advanced prostate cancer, which is why this site was set up, are all brothers in this terrible war, which will take most of our lives. What we must do is to try to keep our lives intact, while we engage in these battles and live what remains of our lives, as best as we can.
The war will take a tremendous toll on us and our families, so we must work together, help each other as best as we can, support our researchers and cancer med staff, and by our actions, leave the best image and path for those who follow.
With luck, some may battle and still be alive when the day comes, and it will, when a cure will be found, or lacking that, when it is made chronic.
So best to everybody, keep focused, stay on course, and LIVE LARGE!
nonsense being spoken yet again LearnAll. The co-discover of the psa test, Dr. Murphy from Seattle, was one of the greats for patients of advanced prostate cancer, who dedicated his life to us. I resent, no make that greatly resent your making this FALSE STATEMENT, on this site. Although not perfect, the psa test is still in use as the key testing modality for PC that we have-sad but true.
Why do you alternative guys think that you can make the false claims that you do on this site? This site was set up to assist men not put fear into them, for what already is one, no make that the worst experience of a man's life to be told that he had advanced prostate cancer.
You are doing a terrible disservice to your fellow man, why???
Bullyboy...I dont know if its worth responding to you. You keep insisting as if I am against Standard of care which is your distortion of my position. Let me make it in simple English " I am not against Standard of care" Do you understand now ?
I am for SOC PLUS anti inflammatory food/herbs/spices and excercise . Are you able to understand my position now...or I still need to clarify more.
There is some controversy on whether to start ADT before metastases are detected, but there is no controversy that ADT should definitely begin when metastases are detected. Randomized clinical trials proved that ADT with either docetaxel, apalutamide, abiraterone or enzalutamide extends survival longer than ADT alone. So, yes, it is probably shortening your life to wait. Think about sticking around for your when your daughter has children.
If it is the case that no rct exists about ADT as mono therapy extending (or reducing) life by itself, then an rct showing life extension for ADT with docetaxel is no proof for the efficacy of ADT itself.
It would be foolish, considering what we have learned in the past 5 years in about half a dozen RCTs about the life-extending power of bi-therapy for early metastatic PC to do a mono-therapy.
Good point - I do plan on giving in when metastases are detected. But now there is a gray area as to how they are detected. The cancer is pretty far along to show up on conventional CAT Scan / Bone scan but that is still the final word to insurance companies. But the newer scans show things sooner. If your PSA is present we know the cancer is there somewhere. Why wait for it to do damage that can be seen? But the other thought is that treatment is guaranteed to eventually cause mutations that are quickly lethal while the more mellow versions might take longer to be lethal if you don't monkey with their biology. On a graph which path is better? That is the problem. There are so many variables that is it hard to tell which path is correct. On any given day I can convince myself to follow either option.
You should consider getting on the following trial first before going on ADT or ADT + anything else ____ NCT03315871
"But the other thought is that treatment is guaranteed to eventually cause mutations that are quickly lethal while the more mellow versions might take longer to be lethal if you don't monkey with their biology. On a graph which path is better? That is the problem."
Actually, we do know the answer across the population: reducing the cancer load is more powerful at slowing down progression than the selective pressure of ADT. Here's what the lead investigator of the TOAD trial found (TOAD was among recurrent men before metastases were discovered):
"One of the most thought-provoking findings was that the development of the castration-resistant phase occurred significantly earlier in the men who started treatment after a delay, a counter-intuitive finding. This may again be linked to treating low volume disease before it grows resistant clones."
They also found that in spite of earlier detriments, like hot flashes, the health-related quality of life was no different for the two groups:
Reducing the cancer burden also was found to trump evolutionary selection pressure in several studies of adjuvant ADT with radiation. In TROG 03.04, the authors, like you, hypothesized that:
"longer durations of androgen suppression might preferentially deplete welldifferentiated, slowly evolving tumour clones, which could potentially lead to an overgrowth of highly malignant, rapidly evolving tumour clones."
But instead they found:
"The cumulative incidence of transition to castration resistance was significantly lower in men receiving [18 months of adjuvant androgen suppression] than in those receiving [6 months of adjuvant androgen suppression].
Nice recap. Concise. Thanks!
Thanks. That is an issue I was struggling with.
IMHO, it is very controversial to say that you have metastases when your MRIs are negative, the PSMA PET is equivocal (SUV of 1.5 could be anything. Get a second reading in other institution), your PSA is stable around 2 and the most important your PSADT is 1.5 years and remains stable.
You should consider to get a second opinion on the PSMA PET reading, if they think those spots are metastases you could get them treated with SBRT and see what happens. Monitor your PSA every month. If starts increasing and the PSADT starts shortening then you should re-evaluate your situation.
Best of luck.,
Thanks for the feedback. These are all great suggestions.
I am an outlier. The RT wanted ADT in Aug 2018. Based on side effects, I declined. I'd wait and see what PSA showed. After RALP, the RT and MO wanted to start ADT + salvage RT as "Standard of Care.". For the same reasons of side effects I said " No, let's see what the PSA shows.". My PSA remains undetectable. For me, "median survival" extension of about _six months_ is not worth two years of hot flashes, breast, sagging ass, softening bones, weakness and muscle loss (that is NEVER fully compensated by exercise) and maybe hip fractures. I am 75 with G 7&8 T2N0. I hold open the options for additional treatment but expect to die of something else.
I am 62 - that is the problem. Can I really extend my life with ADT? I still have weddings to give for daughters and dancing and skiing with the family. It seems the more I read about PC in the spine and fractures the ADT itself is weakening the bones and causing a lot of the issues to begin with and the resultant metabolic syndrome is helping to provide the cancer with a pro-growth environment. What happens if you just eat really well, exercise, take the anti-inflammatory products as we have been discussing? Would your bones and PC be better off over all in that case than monkeying with the cells with ADT? That is the billion dollar question.
You have released a firestorm, it appears, dagrear. My brothers and sisters on this forum seem to forget that the things used for "treatment" are ALL poisons. That is how they work. The MOs --and I bless them! -- have only a single metric: survival. Survival with bones made of ceramic is not my idea of a good time.
I started ADT on day 1 when dx with G9 metastatic PCa. I too was a patient of Snuffy Myers and he had me take a very aggressive approach that included triple ADT with Lupron, Xtandi, Avodart and chemo.
I’m coming up on the 6 year mark in March, I’m still on Lupron and Avodart along with Metformin and estradiol patches (Snuffys protocol) I recently stopped taking Xtandi due to long term SE’s. At this date I am still hormone sensitive and PSA is undetectable. On we go.
Tal is correct and those of you who espouse taking supplements in an attempt to replace ADT medications that are PROVEN To work, are making a major mistake. There is no conspiracy and those who profess to think that there is, should prove this or stop these nonsensical statements.
Again, there is NO Magic cure for advanced prostate cancer, no matter if you too an entire health food store into your system, as some are professing is the case.
It is 2020 and I cannot believe how much crap is being posted on this site and the hard and damage that it is doing to those in the war who actually. have advanced prostate cancer, and for those who are just entering into this last stage of life. NOBODY should have to deal with this, and those who propagate these falsehoods, should be ashamed and held accountable.
This site is meant to help men and their families, not throw wrenches into what should be a concerted effort on us to do our part.
Read again the first sentence of your second paragraph, BB. Substitute "entire pharmacy" for "entire health food store" and the results are the same: there is no (MAGIC, or other) cure for advanced prostate cancer. Yes, you view supplements as "a major mistake." You may be correct. It may also be the case that insufficient funding prevents _proving_ that a supplement works. That it has not been rigorously studied does not make it untrue. If a regimen of healthful foods and supplements create a positive attitude and environment inside the body, can you really prove that it is not beneficial? that it does not mobilize the body's defenses? You can't. I am not ashamed to say that there are lots of things about PCa that no one understands. The honest experts readily admit this and keep themselves open to other possibilities. Might you not do the same?
I am receptive to whatever actually will work, but again, it must be proven by scientific means, and to actually work for an extended period of time. I resent that people are being taken advantage of and avoiding or delaying scientifically proven results and embark on some alternative-call it complementary once it is proven to work, approach and end up losing the narrow window of treatment options and extra time on the planet.
You might do some research and find out that ALMOST ALL the health food supplement companies are NOW owned by the pharmaceutical big boys, not because they work for cancer BUT because of all the money that they will make from suckering people into using these supplements.
I am in FULL SUPPORT of anything, including the kitchen sink, if it helps to fight advanced prostate cancer-again why and what this site is for. I am NOT supportive of any claims made that cannot be proven to work and effectively battle the disease.
Lessening side effects is a good example of where some supplements can be very useful but that is a much different animal than to actually fight the disease.
In a reply above, you mention above treatments that are "proven" to work. Some food for thought to advance the argument:
These are direct quotes in emails to me from an MO at Hopkins;
On 5-6-19 "I would advocate holding off treatment until actual disease. Usually this means on CT scan and bone scan. New scans more sensitive and may see things earlier but not sure yet how to use this info."
On 7-2-19 "My recommendation is based what we are seeing on standard imaging not Axumin. No one knows right now what to do with these new imagine (sic) platforms as it relates to treatment decisions." ....... "First line therapy is hormones which are not curative, have lots of side effects and no trial ever showing they do or do not improve survival. So given lack of info on benefit and the side effects, I still would wait if regular scans are negative. However, I understand anxiety and if Axumin were positive, might be reasonable to tink (sic) about starting something."
On 9-27-19, in reply to my informing him of 2 positive nodes on PSMA scan at MSK and PSA of 4.27, with PSADT of 7 months. " I will reiterate what I said before. We have no studies that support giving hormone therapy to patients with rising PSA and no disease on regular imaging scans. We have no data to say it is good and we have no data to say it is bad. I base my recommendations to not start hormone therapy on three things: (1) there is no data to support it, (2) it is not curative, (3) it has lots of side effects that can affect your quality of life and your health. It would not be wrong to start hormone therapy if you are anxious. Some physicians make a different decision and promote using it earlier.
I know that you and many others on the forum, eg., Tall Allen, strongly advise ADT ASAP, as did Dr. Myers, and as does my MO at MSK. But the guy responsible for the above quotes is among the leaders in the field at arguably one of the leading institutions for PC. So is something "proven" or not proven?
I should have been a woman----they have it so easy.
I am somewhat shocked at what you have been told, but need more details in order to assess his recommendations for you. I am confused though, did you have surgery and now having a reoccurrence, or are you still in the early stages of original disease??? This makes a big difference in one considering treatment options, as does age, current health etc.
There is in fact lots of data to support the early start of IHT/AHT, for advanced prostate cancer, and its giving one more time. I agree that there is no cure for advanced prostate cancer, so we agree there. There are side effects but if you can go on IHT-intermitent hormone therapy, then these are lessened a great deal.
Even with AHT, what is worse, to have side effects and have to learn to cope with them, or to die earlier? At some point there will be no point in more treatments, but at this stage, still lots of life to live so why gamble???
If you are much older and not in great health, then perhaps watchful waiting, which is what I am thinking is the place that you are at, then what he was suggesting, has some merit.
Prostate cancer is not some foreign object. It is the most common form of cancer for men. It follows a path in its growth, and is quite predictable in this for most cancer patients.
Spend some time at the medical library and study PC. The more than you know, the better able you will be to direct your treatment according to the guidelines that are out there.
Thanks Billyboy for the reply.
I am 78, will be 79 in Sep. Surgery in Jan, 2012. Gleason 3/4, T2c, all else negative. Recurrence Jan 2016 at 0.2. Jan 2017 at 0.3 Now 5.07. PSADT 7 mos. Excellent health, not overweight, active, only script is 5 mg rosuvastatin. People often underestimate my age by about 10-14 years. (I'm cute) Doc at MSK wants to start adt---says if we begin before PSA of 10, will be IHT. If more than 10, will be continuous. Doc at JH says wait, as I mentioned. As it happens, both of them went to Columbia College Physician/Surgeons. JH doc is co-director of their prostate cancer research program. So I have opposite input from MSK and JH. Maybe I should go to UCSF, Duke, Vanderbilt, Moffit, et al
First, I do not give out medical advice beyond using the statistics and results from proven research-which in and of themselves, evolves constantly. Further each man has factors that should NOT be blanketed into any category without having all of the information.
That said, the medical approach and recommendations that were made to you, mirror my own, and are pretty standard, although more to the aggressive side of treatment options.
Interesting that you have two opinions which vary only in terms of when to start ADT. You are 79 not 49, so that too was a factor I am betting in opinion two being less aggressive in terms of when to start to take action, buying you a year perhaps, with no treatment.
As I noted on an earlier post, my opinion. is that the earlier and harder you hit back, the better the response and most importantly, the less cancer that is in your system first, and secondly, the less cancer the less is the risk and/or shear number of the more aggressive cancer cells will be in your body.
Your call to make, but with you being in good health, meaning you could handle more rounds of IHT, should it continue to work, then why wait???
Increased risk vs some lower quality of life, but buying you more time on the planet, gee a no brainer to me. At some point, there will be a cure or a medical break through that will make PC a curable disease or one that be considered a chronic one, i.e. like aids. Yet another reason to consider pushing the envelope on treatment, for the longer you can survive, the better the odds that some bright research crew will come up with the MAGIC PILL for us.
I have had many rounds of IHT and am still here, yes the side effects do build up, some are not reversible, some do partially reverse, but, given the choice if I had to do it again, would still opt for going to the max, pedal to the metal!!!!
As a side note, as part of my bucket list, I built a drag car and although I suck at it, it has been a joy for me to rocket down the strip!!! In other words, LIVE LIFE LARGE, as one never knows when something might happen to change it.
I think if the Baltimore professor was in your condition he would be running to get a Lipton shot.
I did not say that it was a mistake to use supplements. What I am saying is that there is NO scientific proof that they will cure advanced prostate cancer or prevent its spread, so for anyone to state otherwise is a LIE, simple as that. It is only those who make money by being snake oil salesmen who want people to believe that the entire world is a conspiracy and that they, and only they, have the solution. Nonsense!
NO supplement, no herbal medicine, no naturopath will or has cured someone with advanced prostate cancer, period. This is no good feelie disease, this is a life threatening beast that one cannot wave some wand over and profess that someone is better.
I think that you need to do a lot more studying about prostate cancer before you take a stand on the position that you noted. In the meantime please refrain from making statements that have no foundation of support.
Over the years I have encountered many men who choose to wait until it was too late, so why would one risk an early death vs enduring and if lucky with IHT, which could extend one's life by many years. Better to be on this side of grass for as long as possible. I do not mean to minimize the side effects from AHT treatments, but seriously, when you die you do not get to come back and redo the movie, i.e. a mistake early in this game, can and will put you out of it much earlier.
But I respect each to his own, but ask your families, do you want dad around longer, even if he is grumpy and has bigger breasts then mom?? Come on boys, get on with the game, rock and roll and suck it up!!!!!!
I just started another round and hate it, promised myself I would not do another one, but guess what, my inner brain said, hey stupid, if you die, you take us with you so get off your butt and get over and get your injection and start the cycle one more time. Almost 20 years later, I am still at it-and I look great in a bra!!!!
Which AHT are you on? My husband’s MO, who will put him on treatment when his psa is 3 or more, does intermittent and said we would have a choice of mono therapy or multiple agents at that time.
I strongly recommend you not to stop ADT because cancer is so aggressive and may progress and Your latest psa isn’t under 1 .I know the side effects are awful but unfortunately that’s the only way by the time of being to stop this monster