An outcome I was told wasn't possible .. - Advanced Prostate...

Advanced Prostate Cancer

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An outcome I was told wasn't possible ..

Milly2003 profile image

I joined this Forum shortly after I was diagnosed with Advanced prostate cancer in early 2020. Having been told by my oncologist team that my Gleeson was 9 and the cancer had metastasized to my hip and I had no chance of cure and could expect to live for another 5 years, maybe a little longer. My PSA was 78 at that point. I accepted Hormone treatment but refused chemo. It was at this point that I decided to seek alternative therapies. My PSA dropped first to 13 and then to 4, then to 1 over six months whilst only having the hormone treatment and the alternative treatments that I had chosen. I then underwent radiotherapy treatment, in the main to appease my family.

I had decided to seek any alternative treatment I could in any format in the hope that it might help and considering that I had little to lose. The medical team were very dismissive and said I was 'chasing dreams' and to be careful. My alternative treatments were, Cannabis following Rick Simpson plan which I completed, its tough but I did it. Plus I took, (and still take) huge quantities of vitamin C (2,000mg per day) & vitamin D 28,000ml, Iodine, Turmeric, Ginger, , green teas and regular Tuina massage treatment. I luckily found somebody who has guided me through this extreme vitamin regime.

When I completed my Radiotherapy I asked my NHS oncologist if I could have a scan to assess the results, he refused explaining that I would only be eligible for a scan "When" my condition deteriorated. After much deliberation I decided to go privatly for a full body MRI scan at London's leading Cancer treatment hospital. It was a decision I didn't take lightly "be careful what you wish for' came to mind. But I could hardly have asked for a better result when they called me two days later explaining that I was totally free of cancer! Whilst we all hope for such results I did not expect it.

I withdrew from this forum some time ago as a few people said I was wasting my time having non medically proven treatments and supplements and were very negative..

I have made this post to encourage everybody to keep an open mind and do not dismiss any thing that may help, clearly I do not know exactly what has removed my terminal cancer but I am certain the various things some on this forum said were futile and a waste..... were not! I don't think that I can thank any one thing for this result, it could be one, it could be a combination.

Good luck to all who's lives are decimated by this cruel illness, but please keep an open mind on alternative treatments, and never give up.

151 Replies

What about the micro cancer cells most everyone here says circulate through your blood stream once you become metastatic? I don’t think there is any way your doctors can detect those. I too underwent the full Rick Simpson protocol, twice. I hope it may have killed all the cancer cells that escaped from my prostate into my blood stream. Only time will tell.

Milly2003 profile image
Milly2003 in reply to 6357axbz

Good luck, i hope so too

First off Thank God for your status. Do you have any spiritual beliefs that you feel helped you ? I welcome this post . I am similar in many ways. I did a naturalpathic plan set by a md nat onco. I did extreme holistic diet , high dose c IV’s and dmso . I do 20 nutrients amounting to 40 pills per day.. I did RS Rso plan twice in a row and continue a small dose twice daily . I commend you on adding these methods to the RT and whatever adt you did . Ive done the same . Although your PSA was higher mine was 20 and your a 9 when I was an 8 . I was in more serious condition having k failure introducing bi-lateral neuphrositimy tubes & foley for 18 months then internal stents . I did imrt with Lupron 18 months. I’m still on a test adt drug( Tak-700) stopping adrenal production and I did the orch in 2017 dropping Lupron. You started off bad but got better quickly I see.? Without the Rt and adt neither one of us would be here today. At least I know that I wouldn’t . I’m wholeheartedly into nature alt medicines for any cancer patient. Unfortunately the conventional is a also needed to put APC down . It is great the scan is clear . I’ve had clear yearly scans for six years now . I’m not trying to bust your bubble . Keep doing what you’re doing. It’s working good for you . I too don’t post my alt med here much because there are few followers . Here’s what I am told. No one has said to me I’m cured. My original mo I assume would be elated that I’m still here today . I’m told that there is no known cure for metastatic stage #4 .. And that at any time there can be 2-3 million pc cells unseen by any scans.. not a happy thought . If we live long enough the inevitable return is forcast. Usually the heart will go first from depletion. IMO f. I am happy that you are undetectable with no signs. Now to keep it there for many happy years is one goal . Let me know how you’re feeling five years now? You are virgin with this disease with only one year in. The first is the worst. Listen to Magnus he’s had almost 3 decades with APC . A true vet! Keep up living brother! Don’t worry about others criticizing. Do you !

Excellent response to ADT and radiotherapy.

It must be!i was advised to have two years of ADT but hated the side effects so only had it for 6 months, two jabs.

Anomalous profile image
Anomalous in reply to Milly2003

I don't think the data is super, super solid on extended use of ADT. Seems like RADAR showed about 20 more guys died in the 6 month group than the 18 month group over a decade or more, out of hundreds of men, which is significant but still. that leaves a whole lot that did just as well with 6 months. Evidence is pretty darn clear ADT helps; the length is another issue

My husband is going into his 18th year as a Stage IV, Gleason 9/10 and lousy prognosis. Les had surgery, radiation, zometa infusions, and Lupron from the beginning, no vacations. We got his blood results last night and his psa is zero, again, and the rest of his blood tests were amazing. He leads a normal, active life. We look down the road 6 months at a time since he gets the Lupron 6 month shot. No vitamins, no special anything. Just a relaxed, stress free life on the north shore of Kauai.

I see a paddle in your bio-pic on the beach. Your and his “normal active life” looks blessedly much better than for most as “just a relaxed, stress free life on the north shore of Kauai.” Congratulations on that lifestyle and relish every day on the blue Pacific. ( My own corner of paradise is on the Playa Azul of San Jose del Cabo six months of the year.

We first retired to San Juan Island, Washington in 2007, and 7 years ago we sold it all and moved here. Never look back, just do it! Right? (he still rides his Sportster every day.)

Most excellent life! We spend the other half year in Bend OR. Do you surf? We are kookie longboarders and much better kite-surfers. Traded up my Africa Twin this year for a BMW R1250GS Adventure. Sportster is a great ride for the island.

No surfing but I love to kayak and Les will paddle board.

Maluhia a me Aloha!

17+ yrs. phenomenal!! Keep doing what you do. Change nothing. Congratulations,

Mike

St Pete

Thanks. It's been a long slog but we've made it this far. His doctor said that it is unreal for him to "have a Gleason 10 sitting right here". He's the longest living patient his doctor has.

Btw: my son and I learned to Kitesurf in Kauai in 2001. He was 11. We still kite 20 yrs later. We learned in Hanelei at Pine Trees, and at the Y on the North Shore a mile west of Hanelei. So beautiful. Unreal really. Best,

Mike

St Pete

Lots of kite surfers down at Anini Beach. Yes, it's a gorgeous place to live with wonderful people! We feel very lucky.

in reply to bluepacifica

That is quite an accomplishment! 18 years with stage four is very impressive and gives hope to many. Good luck with continued success.

Meadowbank profile image
Meadowbank in reply to Milly2003

I am gleason 10 and had 30 radiations finished and started the jab,and I am up to my 3rd jab of Lucrin 22.5mg every 3 months till it stopsworking ?? last month 3 differnt radiation scans, full body scan, full bone and lung scans and after many treatements this my last resort and the 3 scans came back that i am in recession. (releif) 3 years of 3 diff cancers, Gp said upto 5 years max, i am trying to prove him wrong..just 2 jabs and quiting is a waste of your future life, side effects I forgot in last nights post come from 2 radiations, Chemo, immunotheropy, and now Lucron.. foggy brain, lost my head hair perminent, muscle shrinkage, genetal loss and bad rashes and lost a few others but I am happyto wake each day and when out of lock down in AU we plan to travel and enjoy life again..Please re think and get back on ADT and smile at the side effects as my wife said first you worried, hid your depression and now you dont worry just smile

Good luck and I do hope you get back on board the train trip ..

Milly2003 profile image
Milly2003 in reply to Meadowbank

Thank you, I wish you all the best with your ongoing treatment, I am not being advised or prescribed any further treatment other than regular PSA tests which is very fortunate.

No spiritual beliefs I’m afraid but I did have a determination to beat it whichever way I could. I went with both conventional and alternative medicines .. not chemo, but everything else. Now nothing thank god, just the vitamins! Good luck with your treatments

Lulu700 profile image
Lulu700 in reply to Milly2003

It takes some doing and even good luck to go into a clear status .. may you remain happy and Healthy . 🏋🏽‍♂️💪

ADT will certainly shrink metastases on its own for some time. That is especially true when ADT is combined with prostate radiation to destroy cancer in the prostate, because the prostate is otherwise the source of many new mets. The science tells us that it works much longer when combined with other therapies. Your "open mind" may be costing you years of life.

Milly2003 profile image
Milly2003 in reply to Tall_Allen

I only had six months of ADT, I hated the side effects and stopped, against advice.I have no cancer and an undetectable PSA, I have no further treatment or medication.

All I have done my be a waste but from where it sit it is difficult to see how.

I left this forum due to the one sided view of most on it, it really is quite astonishing to be sitting here being told how wrong I am.

I have never sought to advise just to share my experience and I am extremely pleased and thankful to no longer have cancer, how ever wrong I am.

Tall_Allen profile image
Tall_Allen in reply to Milly2003

Good luck. I hope it holds.

Milly2003 profile image
Milly2003 in reply to Tall_Allen

Thank you.

gregg57 profile image
gregg57 in reply to Milly2003

You said: "I left this forum due to the one sided view of most on it, it really is quite astonishing to be sitting here being told how wrong I am."

If what you mean by one-sided is that most of us here choose to follow proven scientifically-based treatments, then I'm happy to be known as one-sided.

It's certainly your choice to stop ADT against the advice of your doctors, but I have to be skeptical of anyone diagnosed with stage 4 prostate cancer who claims their cancer is completely gone, especially with unproven treatments. I'd hold off a bit longer before making claims like that, you are only a year and half in and likely still getting the benefits of the Standard of Care treatments you did.

It is great that you've had such a good response so far, hopefully it will continue.

maley2711 profile image
maley2711 in reply to Milly2003

I think most folks here try to be open-minded. For us, could you provide any links to studies showing benefit from the alternatives you used?

Milly2003 profile image
Milly2003 in reply to maley2711

No I cannot, as most know there is little or no research into many alternative treatments, but then there is no financial benefit to the pharmaceutical industry. I took the advice of someone who is very knowledgeable regarding the benefits of certain vitamins, enzymes and supplements, i realise I am very lucky to have access to their knowledge. I can list all of the therapies I took both medical and non, if anyone is interested. Possibly these books may be of help also .. The Iodine Crisis by Lynne Farrow, High Dose Vitamin D Therapy by Tiago Henriques

maley2711 profile image
maley2711 in reply to Milly2003

how are they knowledgeable without the benefit of underlying studies of some sort? anyway, most of us have no relationship with such person(s). I might try some...provided I knew that there would be no adverse consequences(outweighing a proven benefit). You are/were wise enuf to also follow SOC guidance!!

Bebby1 profile image
Bebby1 in reply to Milly2003

I hope you go on for years and years Any success is great news

TommyCarz profile image
TommyCarz in reply to Milly2003

What did you hate about ADT? And how old are you?

in reply to Milly2003

It is always good to see how others are managing. Especially those with positive results. Like you stated, without actual documentation on the therapy you chose it is difficult to know exactly what treatment is doing the most good. I think that is what people worry about and that alternate therapy might be counter productive to the traditional therapy when you do both. Everyone must choose for themselves though. You are happy with your decision for your therapy and that is what matters most. Age, physical health when diagnosed and state of mind all play an important role.

maley2711 profile image
maley2711 in reply to Tall_Allen

To be clear........radiation to prostate produces/is the source of many metastases???

I believe it is just confusing sentence structure…Ta meant the prostate is the source of Mets.. so radiation of it is helpful

Thanks - you are right - I changed the wording. I hope it is more clear now.

Tall_Allen profile image
Tall_Allen in reply to maley2711

Sorry to cause confusion. I meant what concerned-wife said.

maley2711 profile image
maley2711 in reply to Tall_Allen

thanks......just checking.

in reply to Tall_Allen

I understand that you helped a lot of people on this site and this is a good thing, but not everyone is reacting to medication or alternative medicine the same way. You push medication of all kind too much without being really qualified. It is good to be an advocate and express your opinion and experience, but you need to curb your negativity to people who choose another path. It is demoralizing and depressing and we don’t need this.

Cramlingtonboy profile image
Cramlingtonboy in reply to

Tall_Allen gave some cautionary advice and best wishes. To characterize that as negativity could also be construed as, er, negative, demoralizing and depressing. We all have our opinions but we should recognize that medical best practices are what keep most of us alive on this forum.

Cramlingtonboy,

At this time with clear imaging and negative test results--what treatment would any doctor prescribe for Milly2003? Just have to keep testing right?

Currumpaw

Tall_Allen profile image
Tall_Allen in reply to

Thanks for your minority opinion. Please don't tell me what I need to do, and I won't tell you what you need to do. I think you are harming yourself, but that is your choice.

Karmaji profile image
Karmaji in reply to Tall_Allen

We have on this forum different opinions and different types of holistic vision.

In no way APC is one fit all treatment as it is so very heterogeneous and we are all different in our mind and body states.

TA is giving excellent knowledge on chemical drugs and therapy approach. The belief in RCT does not have to be blind belief, but a simple marker.

Once I have APC, I have developed an integrative approach. I have to change my whole lifestyle to eradicate the very cause which led to APC. This includes TA vision of chemical therapies, Nutrition is the best medicine, exercise, intermittent fasting, mindfulness, choiceless prayer projects us into quantum space of non duality.....

After APC, I am a changed person with a new QOL.....

We are what we think, what we eat and how we are connected to life force...

I hope one day our medicine will evolve to heal the patient and not the disease. There is no need to develop toxic drugs....we have all the know how to develop treatment with no toxicities....but took a wrong scientific direction...

Our whole nutrition is toxic...processed food, pesticide, diary products with hormones and antibiotics, food with no minerals due to industrial agriculture, GMO foods, life full of stress, no time to stop this running, ......

As Omar Khayam said long ago....

Drink...I know not whence I came and why

Drink....I know not why I go nor where

=======

Drink...I know not whence APC came and why

Drink I know not why APC goes or does not

Let us share our journeys.....each of us has a unique journey with some common mileposts....

gregg57 profile image
gregg57 in reply to

Tall Allen's posts are fact-based and informative. They follow the science and the results of clinical trials wth human cancer patients. These are not his opinions.

If you want to see opinion-based posts, there are plenty from the so-called "alternatives" crowd here who just use excuses when asked for proof as if it's not even necessary to prove anything as long as it sounds good.

Here's an example when asked if he could provide proof "No I cannot, as most know there is little or no research into many alternative treatments, but then there is no financial benefit to the pharmaceutical industry."

But aparently, lack of proof is no obstacle to making claims of miraculous cures, we just need to accept it and stop being so negative!

With alternatives, you don't get clinical trial data, just anecdotes like "I tried this..." or "I've had luck with that..." or "a very knowlegable person thinks this will work..."

My PSA dropped first to 13 and then to 4, then to 1 over six months whilst only having the hormone treatment and the alternative treatments that I had chosen. I then underwent radiotherapy treatment.

That's a nice response to ADT and radiotherapy. Somewhat expected with your somewhat low PSA level and over all low volume/mets of cancer.

My PSA of 1647 went down to 243 after a couple months on Lupron alone.

Probably would have continued downward on Lupron alone but I started chemo so cant tell.

Two years after my brachytherapy in 2011, my RO told me that my cancer was cured. I didn't believe him. I was right. My can came back as a recurrence outside the prostate, which was treated and ADT. But now I am fighting with metastatic prostate cancer. During a clinical study at NIH that included a full body 3T MRI and a PET/CT scan. The MRI was clean but the PET/CT scan detected metastatic disease in multiple lymph nodes. You see MRI can miss cancer that can only be detected by PET scan. You should go for a PET/CT scan.

Anomalous profile image
Anomalous in reply to dac500

plus they don't always put off PSA

I hope your Oncologist set up your appointments for future PSA tests while you are at this critical post treatment juncture with possible remission.

Probably PSA check every 3 months for a couple cycle’s then go to every 6 months twice then annually provided there is no progression.

Scans in about a year Pet/Ct scan. Not MRI. dac500 made a point about this as well.

Hopefully no re-occurrence. You would be naïve to think you are in the clear—cured.

Hopefully tamped down enough to last until you are so old you pass from something else.

But again, you can’t take it for granted. Get your PSA tests and possibly scans as recommended.

And if you do have progression, if the sleeping micro PCcells wake up and get hungry again, hopefully you won’t shun medical treatment.

Luckily you had sufficient medical treatment this first round at diagnosis. You should get a lot of "time" without re-occurrence from the radiation therapy you had. But keep an eye on it.

Congratulations on your good results so far. Declaring victory so soon and ascribing it to your alternatives seems premature at best but I like the optimism. A better scan might be helpful. What is your testosterone?

I would not be too quick to proclaim mission accomplished, I went several year at 0.000 another words cancer free, until it came back. I hope yours never does, and healthy living has its merits. I have friends who have smoked pot since the 70s and some of them have cancer. Good health to you.

It would interesting to have feedback/opinion on IP6 (inositol).

Fash01 wrote --- " It would interesting to have feedback/opinion on IP6 (inositol). "

Much was posted on another PCa forum regarding benefits/wonderous results of IP6 --- and then NO MORE. Seem to recall it was never a *stand alone* but instead *in addition to the kitchen sink.*

WOW! I never asked to see my scans, but your story prompts me to do just that. Continued good luck to you!

Scans without the radiologist interpretation is useless.🙉🙊🙈

Milly2003 profile image
Milly2003 in reply to doc1947g

Really!! I did not know that…… got knows who the people were taking through the scan results, must have been cleaners

doc1947g profile image
doc1947g in reply to Milly2003

Scans or MIRs consist of hundreds of pictures that have to be examined carefully each one of them to be able to give a diagnostic.

BTW, cleaners are not doctors.

Milly2003 profile image
Milly2003 in reply to doc1947g

Well I assumed that most people would understand after a scan the consultants take you through the findings, well they always have in my experience.

doc1947g profile image
doc1947g in reply to Milly2003

Sorry to say, but very often you have to ask otherwise they will not say anything.

in reply to doc1947g

Here the techs are not allowed to discuss any findings with the patient. Our doctor went over them at the follow up exam. I then called and requested my own copy of the results for the file I keep at home. If done at our local hospital I could have gone online to see and print the actual results myself. However we had to travel some distance to a hospital equipped with the PET scan machine needed for best results.

doc1947g profile image
doc1947g in reply to

The same here.

I hope it works but you still well within the window when hormone therapy is known to suppress cancer to the exact extent you describe. Alternative therapies can be great but please also consider proven treatments like Zytiga.

I like your optimism. I too have experienced some black and white thinking on this site. There are many who do not venture outside of the certain known established scientific facts - backed up by RCT data. Thats fine by me, and very valuable data - - which we should listen to. But there is a tenfolds broader arena of things that "may help" but are unproven by the establishment. And because they are unproven the establishment cannot tell you that they dont work - no proof!

Here we are on our own, and we need to work with probabilities. The best example I have seen is the posts by Cashlessclay - he systematically varied elements in his diet and monitored the results - brilliant. Do dont despair if you get some tough messages from the RCT guys - they mean well, and are very well informed.

But the problem with the supplement/vitamin approach - as well as the diet approach - if you get a good result you have no idea if this was due to your standard treatment, your alternative treatment, or your type of cancer, or the state of your immune system. So I agree - do what you feel for - and enjoy while the cancer is suppressed. Let the future look after itself and tackle it when regular PSA tests and occasional scans suggest a new phase.

Thank you, I am optimistic and have just recorded my circumstances so far, my oncologist suggested PSA test every 6 months but I am having one every 3 months, my last scan at the RMH did not show up any cancer in the two previous areas that had been identified and no cancer evident throughout my whole body so right now it could not be better, I am however mindful of the future.

London441 profile image
London441 in reply to Milly2003

What is your testosterone?

gregg57 profile image
gregg57 in reply to London441

Based on his PSA, his testosterone is likely to still be castrate.

Anomalous profile image
Anomalous in reply to gregg57

I have a window sill lined with bottles that I take almost cult-like

London441 profile image
London441 in reply to Milly2003

If you don’t know your testosterone history, you have not ‘recorded my circumstances so far’.

Milly2003 profile image
Milly2003 in reply to London441

I have never had my testosterone checked, further it has never been offered to me or spoken about since diagnosis so I am unable to say.I was on ADT for 6 months only, been off for 8 months now

London441 profile image
London441 in reply to Milly2003

If you’ve never had your testosterone checked, you are uninformed about your status. That ‘it has never been offered to me since diagnosis’ means it should have been.

You declared yourself cured with metastatic Gleason 9 disease, based on a MRI. You had radiation, but only to ‘appease your family’.

You also cut short your ADT, refused prescribed chemo don’t provide a current PSA. You also have no idea what your testosterone is and apparently never have.

Having provided this cherry-picked summary, you then assert that cannabis, massage and vitamins have made the difference. Then you whine that you had to previously leave the forum because of negative feedback on your non medical treatment.

I try to keep an open mind, but spurious claims like this leave me no choice but to believe you have told yourself what you want to hear and employed co-signers to reinforce it.

Know your numbers! Directing one’s own care, especially against medical advice depends on it.

If you can’t sell it better than this, expect more negative feedback.

Milly2003 profile image
Milly2003 in reply to London441

What! I have never tried to sell anything just explained what has happened to me and things I feel have helped. Furthermore I have never said that I am cured … your words.I have never been offered or advised a testosterone test from either the NHS oncology team, a private Oncologist or The Royal Marsden Cancer Care in London … so I am unable to comment on what you stress is so important. I have no need to prove anything to anybody, I am just telling others what has happened to me. I have had undetectable PSA for over one year, an full scan at my counties best facility and have no visible or detectable cancer, that is all I have said. And my earlier withdrawal from this site was never due to a healthy debate as to which therapies each of us find useful … more the absolute negativity of certain people. How my apparent good news can result in your response is a mystery to most.

London441 profile image
London441 in reply to Milly2003

It’s great news, and I’m happy for you. I’d also hate to see you ride off into the sunset with incomplete information. It’s a unnecessary risk.

CAMPSOUPS profile image
CAMPSOUPS in reply to Milly2003

Semantics: cured etc. The following are quotes from you:

they called me two days later explaining that I was totally free of cancer! Whilst we all hope for such results I did not expect it.

.I have no cancer and an undetectable PSA

I am extremely pleased and thankful to no longer have cancer, how ever wrong I am.

For some reason your "research" led you down a rabbit hole. You missed the in your face fact that Gleason 9 and especially metastasized outside the prostate ( your hip ) prostate cancer will not be gone. You still have it. The foot has been taken off its accelerator. I wouldn't even say brakes have been applied just foot off accelerator for now so that their is no progression to be seen with what we have available to measure it.

doc1947g profile image
doc1947g in reply to Milly2003

Here in Canada, PSA and Testosterone Total are done together.

BTW 6 months of ADT will very often put your PSA undetectable for a year or more, like for me, but that does not means that you are cancer free because the PSA result from the ADT and ADT fools the tests results.

🙉🙊🙈

MichaelDD profile image
MichaelDD in reply to doc1947g

Your right about the return time. I'm on "vacation". A year this month. Mine showed 215 at 6 months. 511 last week. Last 2 years PSA has been less <.014

in reply to doc1947g

Exactly! Prostate cancer learns to survive without testosterone to feed on.

jfoesq profile image
jfoesq in reply to Milly2003

This is exactly why many of us questioned you using the term "cured". If you were cured, then your ONC wouldn't have recommended follow-up PSA tests. You ARE in remission, which is awesome! All of us are thrilled for you. But- some of us react when the term "cured" is used inappropriately. I hope your remission lasts a VERY long time.

Milly2003 profile image
Milly2003 in reply to jfoesq

I did not think I had used the word “ cured” as for my oncologist advice it is to have psa test every 6 months, I am having a test every 3 months.

jfoesq profile image
jfoesq in reply to Milly2003

My apologies. You didn't use the word "cured". But- you did use the words "free of cancer" which I interpreted to mean "cured". I am not sure what else was meant by that and if I were a doctor I would not have used those words under these circumstances. Regardless-I wish you the best.

Milly2003 profile image
Milly2003 in reply to jfoesq

I do not profess to know a lot about prostate cancer other than what you learn when you have it, and have only ever explained my situation, my latest scan was undertaken in August resulted in me being told that there was no evidence of active disease, my right acetabular lesion is no longer visible with a return to normal bone fat. I was told by my oncologist that this is very good news indeed, my PSA has remained undetectable and I feel very healthy and well, as said i am having regular PSA tests but no medication.

jfoesq profile image
jfoesq in reply to Milly2003

Sounds great Good luck to you. FYI I have been fighting this disease for 9+ years since diagnosed at age 54 I had 3 "vacations" from treatment in the first 4 years but, unfortunately, I won't have anymore since the last one only lasted a short time befoe my PSA began to rise. I am still responding to Lupron and Zytiga, which is great but , while my PSA remains very low (.12,.09,.08,) it is no longer undetectable.

Milly2003 profile image
Milly2003 in reply to jfoesq

That’s great! As said i tried anything on the basis there seemed nothing to lose.All the best going forward

Burk profile image
Burk in reply to Stoneartist

Excellent response!

Stoneartist profile image
Stoneartist in reply to Burk

Thanks

Thank you for sharing! I’m so happy to hear your story of health being restored, I’m hopeful that my husband will be able to share similar news one day!!😊

Although I cheer everyone who is in this game, this fight, or on this path... Being such a short duration from diagnosis and treatment, the evidence of your alternate path having effect is a bit premature! Many have good response early on, only to find disappointment later, and the lack of a complete diagnosis work-up post therapy leaves much undiscovered in your case. MRI alone...? But the mind, the mind is the least understood and can have powerful effect over the body, it does every day and little we notice. I hope you have found your path that brings you exactly what you seek. Because in the end, it's only ourselves we owe to the choices we make, nobody can say we're wrong or right!

Good Luck and Best Regards

Thanks for sharing your victorious story! You have encouraged many!

Milly2003, what a testimony your is--one for the ages! So inspiring to see someone go against the odds stacked against them like you did, against medical authorities' "doomsday prognoses" and naysayers' doubt and come out triumphant.

It goes to show us that conventional medicine alone is great, especially with the advanced sophisticated diagnostic tools at its disposal, but not so great that it can claim an entire "monopoly on the healing process." Alternative, Complimentary, Integrative, and Chinese Traditional Herbal medicines can lay claim on it as well. So can Subtle Energy-Based medicines such as Reiki, Qi gong, Pranic Healing, and spiritual and Divine healing, all, lay claims as well.

In my two decades of researching and studying about healing and betterment from all schools of medicine and healing as a writer, I've had opportunities to read many testimonies about or talk face-to-face with people who've received healings or significant improvements from every last one of these.

This said, could I caution at this point Milly2003, let's not think in terms of "touchdown--game over!" Cancer cells don't surrender so easily. Instead, they tend to retreat, go into hiding like a guerrilla army, to plan a counter- attack of some sort. So keep on guard and wary of such a move by them.

I like what I saw in terms of your botanical and nutritional therapy "battle gear"--cannabis, tumeric, vitamin-c, green tea, etc. After laying off a little here or there, I hope you resume with these. If you're not using the advanced forms of tumeric (Life Extension Curcumin Elite, Longvida, Curcuwin, etc.) you might want to consider them. They can be many times more absorbable than the regular "95 % curcuminoids" tumeric, which at best allows maybe just 5% absorption, and even less reaching the cells, the reason people have to take much larger quantities of it to get therapeutic value.

With the green tea, try Matcha Green Tea (powder). It's numerous times more concentrated than green tea (leaves) in terms of polypehnols, flavonoids, catechins, etc. The key compound for prostate cancer and health, of course, is EGCG in green tea and matcha. Recently, I read a report on a study demonstrating its ability to halt precancerous prostate cells from developing into prostate cancer cells. This apex green tea compound can also be purchased in pure extract form for even more enhanced therapeutic benefit.

Please don't forget Broccoli Sprouts for their very high concentration of Glucoraphanin, which combines with the enzyme in them myrosinase to create Sulforaphane, a top-ten super phyto-compound that needs to be included in anyone's arsenal against any form of cancer. It plays too many critical roles to be over-looked, such as detoxification, tumor suppression, anti-metastatic, improving cell signaling, but perhaps most important, suppressing the expression of "bad genes" that increase risks of the disease, while promoting the expression of "good genes" that contribute to cellular health.

Wonderful job on offense, scoring the big TD against it! Now, let's do a super job on defense, and keep it from coming back!

Thanks for your kind and very knowledgeable reply Back2health, you’ll be pleased to hear that I haven’t stopped any of the supplements that I take, and have no intention of doing so any time soon. As you say the conventional treatments and diagnosis techniques are something we can’t do without but I certainly believe that my dietary changes and all of the many supplements that I take have helped greatly. Good to hear from you and I’ll be looking into the tips that you’ve kindly given.

in reply to Milly2003

You are right about a healthful diet being a big boost.

Great to hear that Milly2003, that you have incorporated "phytochemical/nutritional therapy" into your health program

and intend to maintain it.

Also, I'm glad to hear that my Reply was of some help. It's just that I'm inspired by your success and your approach and would like to see it all continue in the right direction.

And I certainly believe it can!

doc1947g profile image
doc1947g in reply to back2health

Sounds like advertising.

Milly2003 profile image
Milly2003 in reply to doc1947g

I don’t understand ?

doc1947g profile image
doc1947g in reply to Milly2003

Every single herbs and tea.

Milly2003 profile image
Milly2003 in reply to doc1947g

Your point is so ridiculous it is mot worthy of comment.

gregg57 profile image
gregg57 in reply to doc1947g

I agree.

There are people on this forum who are not cancer patients or caregiver/advocates for one, but use the forum as a soapbox to promote whatever unproven alternatives they've "heard about". They often disparage the Standard of Care at the same time while taking no risk to their own health.

I am opposed to allowing those people to use the forum to promote their own alternatives to treatment agenda. We need to call them out.

TomTom1111 profile image
TomTom1111 in reply to gregg57

We recently booted one and the other cheerleader should be ignored.

gregg57 profile image
gregg57 in reply to TomTom1111

Thanks. Good to hear!

TomTom1111 profile image
TomTom1111 in reply to gregg57

You remember...the guy discussing going to Mexico to be cured and the other guy encouraging others to pursue that avenue (my words).

I think the site admin booted him after several days.

CAMPSOUPS profile image
CAMPSOUPS in reply to TomTom1111

Cheerleader AKA sm60. Mr. Scorpion himself.

CAMPSOUPS profile image
CAMPSOUPS in reply to CAMPSOUPS

I was ashamed actually for wasting most of a day going back and forth with him.

back2health profile image
back2health in reply to doc1947g

doc1947g, I am on this site to share my knowledge about prostate cancer based on what I know and have experienced like everyone else on this site does.

As a "discussion/exchange" site, it should be fair for me to share what I know, have learned, or experienced--just like you do-- without being regarded as someone whose advertising.

If something "sounds like advertising," it means something is being "sold or promoted" in a certain way. In my Reply to Milly2003, I am not selling or promoting a product, a service, or even myself. Instead, I am simply sharing my knowledge with him based on my learning, training and experience.

Can't you see, this guy has an outstanding testimony, one I'm certainly inspired by. His Integrative Approach of enlisting botanical and nutritional therapies along with highly selective conventional medicine coincided with nice results.

So in my Reply to Milly2003, it was my desire to share what I could with him ways he could make what he's already doing with natural therapeutics even more enhanced with the goal of keeping himself cancer-free!

It simply bodes well to have this type of hope for another. Because if we can learn to have it for someone else, we can develop it for ourselves as well.

Rectal cannabis, fisetin and turmeric work for me.

As you can see in your thread here, this forum is full of various forms of support and encouragement for you along whopping doses of many-sided views and suggestions from both research and personal experiences. Nothing wrong with that! Good luck and hope you stick around.

Proven medical science is great, and I believe alternative therapies can also be helpful. My humble opinion is to incorporate both. That is what I try to do

back2health profile image
back2health in reply to Oct18

Great idea Oct18. What "integrative medicine" is all about.

Modern, conventional medicine scores great with regards to it's sophisticated diagnostic technologies and advanced procedures to address critical conditions.

But its "either surgery, chemo, or radiation" approach to prostate cancer leaves much left to be desired since they all can have quite undesirable consequencies.

The beauty of "natural therapeutics" is that when employed effectively, they can produce nice results with very few, if any, side-effects.

Hello Milly, So tell us how old are you now?

I hate to be a naysayer but to be "totally free of cancer" is when it dies with you or you never had cancer in the first place.

Anyway, I am glad you are feeling the way you are and I am happy that works for you actually worked for you. Keep fighting, posting and keep well.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 09/18/2021 1:16 PM DST

Boywonder56 profile image
Boywonder56 in reply to j-o-h-n

Short and to the point....gtrate rrsponse

Milly2003 profile image
Milly2003 in reply to j-o-h-n

I am 58 , as I have said i had a MRI full body scan in August, the first since diagnosis, the results is that there is no evidence of the cancer in the prostate or hip where there is a return to normal bone fat.

Cooolone profile image
Cooolone in reply to Milly2003

MRI alone? No CT?

No Biopsy?What about any non invasive genetic test?

I've always been a curious mind, not being a jerk, just want to know when you say "No Evidence" you are saying this determination is being made from a single test? If yes, then that leaves to much open to question in my opinion. And it's not for me you see, as it doesn't effect me. But for you! I would want additional testing to collaborate the test(s) all together to reach a conclusion.

Best Regards

j-o-h-n profile image
j-o-h-n in reply to Milly2003

Wonderful..... just keep ticking............

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 09/18/2021 10:29 PM DST

Milly2003 profile image
Milly2003 in reply to j-o-h-n

Many thanks

in reply to Milly2003

A PET scan is the best, but they don't do them unless really warranted. Insurance doesn't like paying for it! Very expensive.

I think it's a little early to claim a result that wasn't possible....4 years from now and you have the same result...then by all means claim success..but within 2 years..that's not a possible outcome when it comes to cancer.

On the bright side, you've had a very good response to ADT and RT.

rbtbrsrd profile image
rbtbrsrd in reply to TomTom1111

I had surgery July 2009, P3b, refused radiation and hormone therapy. Take 200-400 mg of multi-plant full spectrum cannabis oil nightly at bedtime. PSA still undetectable. I sleep 7-9 hours nightly and my blood pressure is never high. I use to suffer from insomnia and high blood pressure.

TomTom1111 profile image
TomTom1111 in reply to rbtbrsrd

You can use the "cured" term...that's a tremendous result!!

Curious. What was you post surgical pathology and gleason score?

Milly2003 profile image
Milly2003 in reply to TomTom1111

Gleeson was 9 and I did not have surgery as it was not an option.

TomTom1111 profile image
TomTom1111 in reply to Milly2003

What was your psa a diagnosis?

I was G9 psa 12.3 prior to surgery...post post surgery psa was G9 pT3bN1M0. I'm assuming your were M1 right?

in reply to rbtbrsrd

Well surgery removed the prostate...that's where it all starts! The only way you would have measurable PSA is if some prostate gland was inadvertently left in you.

That's very interesting, I was diagnosed in May 2019 Bone, Lung, and Lymph metastasis, PSA 629 & Gleason 9 on six of six core samples. I started therapy immediately, and didn't reach nadir (.30) for 20 months. Personally, I'll remain dedicated to the ADT for as long as it works, even with the side effects. Good luck with the unconventional treatment, I hope it's Lon lasting

gregg57 profile image
gregg57 in reply to TommyCarz

"I started therapy immediately, and didn't reach nadir (.30) for 20 months."

Low PSA nadir and long time to nadir like yours is the best prognosis based on the statistics.

Congratulations! Fantastic news. My only question is how do you know the alternative treatments were in any way responsible for the wonderful result. And, as others have questioned- did the doctors also tell you that micro- cancer cells ( that I don’t believe can be visible on a scan) were also gone. There is a big difference between “cured” and unable to detect.

cfrees1 profile image
cfrees1 in reply to jfoesq

I think you nailed the summary for most of the men here who are skeptical. The results over 2 years or less don’t really say much. “No Evidence of Disease” simply means that the imaging that was used (or maybe even the best available at the time) didn’t detect cancer but it absolutely does not mean that the cancer is gone. It simply means that the scans didn’t detect any suspicious nodes or tumors. I was in that state for 18 months too, but my doctors never suggested that I was free of cancer and we kept on treatments. We all wish for the best results for everyone on this board, but to suggest that a change in diet and adding supplements is the reason for current success rather than the conventional treatments received is a bit of an eye roller.

back2health profile image
back2health in reply to jfoesq

Good point jfoesq. I've been doing quite a bit of reading about "precancerous cells" that appear normal under MRI and CT scan but on microscopic examination are found to have abnormal structures. There were two of them that I read about.

The one called "LG-PIN" (Low Grade Prostatic Intraepithelial Neoplasia) cells appear "normal" in most ways even under miscroscopic exam, but aren't, and is considered not to be a risk for prostate cancer.

Note: The prostatic intraepithelial neoplasia cells are found inside of the "tissue lining that surrounds the prostate gland"--and not the actual gland.

The other called "HG-PIN" (High Grade Prostatic Intraepithelial Neoplasia) cells appears absolutely "abnormal" under the microscope

with enlarged/ swollen nuclei and other gross distortions of cellular components . It, according to reports, poses a 30 % risk of developing into prostate cancer.

Curious to find out about the "drivers" that would cause the HG-PIN to develop into full-blown cancer cells, I did further digging and found

that "Inflammation" (chronic) was the biggest factor being discussed.

Also, male hormone androgens were a factor being discussed. Practically the same factors, among numerous others, that also worsen mature prostate cancer cells.

Also, curious to find out about what natural compounds where being investigated that demonstrated an ability to Prevent HG-PINS from converting to actual prostate cancer cells, the biggest thing I came up with from several sites was the polyphenol EGCG from green tea (something

I am quite familiar with from being a longtime consumer of Green Tea Matcha). Even more interesting, the findings of the report, according to the authors, suggested that EGCG not only demonstrated an ability to prevent the conversion from precancerous to cancer cells, but that it also helped the precancerous ones return to normal--quite fascinating, I thought.

Thank you Milly for keeping in touch, and sharing. I always say, we all present differently, and we all react individually. I hope this remission has wheels, and keeps rolling throughout your life. Please keep us posted. Mike

St Pete

Are you claiming long term effects...with diagnosis in 2020? I don't understand.

cfrees1 profile image
cfrees1 in reply to JPnSD

Yep, this is the problem. Guys are throwing out the word “remission” but you need 5 years of NED without any treatments to be considered in remission.

I have claimed nothing, despite so many people struggling to read, I have told what has happened to me, diagnosed with PSA of 78 in 2019, now been undetectable for a year, latest scan has no visible cancer…. That’s it! No claims and so much shit from a few, sad as much as anything.,

TFBUNDY profile image
TFBUNDY in reply to Milly2003

Great and encouraging result. Please keep us informed of your future results. I have no idea why people reporting good news get flack. I am very happy for you and very interested in how the results were achieved on the basis of listen learn decide. Keep your eyes open for the new diagnostics able to detect early cancers. You might ask De Bono and his team what is available as a trial. I just had an MRI and I'm sweating on the results. My main medication is gin and tonic by the pint. Cheers

in reply to Milly2003

I don't mean to undermine your success. Your method is most likely aiding in your overall health. But at after a year, your radiation treatments should have given you exactly the same results even without the extras. Just keep doing what works for you. You have a good outlook and that is very important. Stay involved.

Milly2003 profile image
Milly2003 in reply to

I will, as I have said so often to the bigot’s I have just explained what I have done and what treatment I have had, never claimed anything, just shared some information.I don’t know what has had such a positive effect and it could be anyone treatment or a combination.

My oncologist is extremely happy with the results as am I, and I will continue with my chosen path but right now very pleased to be off medication and feeling healthy.

CAMPSOUPS profile image
CAMPSOUPS in reply to Milly2003

"never claimed anything, just shared some information"You pick and choose what to say.

You claimed you are free of cancer. We can read and re-read that in your post.

You are either uniformed of the fact that cancer such as yours which has spread outside the prostate is still present systemically in your body or you are purposely trying to pull one over on us. I believe the latter.

Even if you had not attributed your "results" to alternatives. If you had only the ADT and the radiation and posted that you were free of cancer you still would have heard from so many of us here trying to get you to understand that you need to keep a close eye on your prostate cancer as it will more than likely show up again after the effects of the ADT and the radiation wear off.

Milly2003 profile image
Milly2003 in reply to CAMPSOUPS

Really.

CAMPSOUPS profile image
CAMPSOUPS in reply to Milly2003

Absolutely. We care. Therefore we try to inform.

Milly2003 profile image
Milly2003 in reply to CAMPSOUPS

Thank you for explaining that!!

Thank you, good luck with the scan, I have only detailed what has happened to me, I decided early on that I would try anything that sounded plausible as I had nothing to lose, I had treatment from the nhs but opted not to have everything on offer.Right now I am not an any medication at all, I still take vitamins etc and have a psa every 3 months which became undetectable a year ago and remains the same now. And of course I will follow advice regarding future diagnostics. A little win and beer hasn’t done me any harm!

All the best

CAMPSOUPS profile image
CAMPSOUPS in reply to Milly2003

Your basically still "on medication" now. It will be several months before your testosterone comes back to normal from your prior ADT treatment and your Radiographic treatment has effect lasting at least 6 months to years depending.

And radiation he had. Just the other day I learned or was reaffirmed of the long response gained from successful radiation.

Yea. You have explained well what was the aggravating background noise.Almost sly. I felt he is a child at times. Playing innocent but then coming back to not his words "Ahhh, I dunno. Cancer is gone. That's all I can say ".

HU/Malecare is my first digital social experience. No prior Facebook, twitter etc.

Some are seasoned at words when they don't have to face the other person and we could be seeing that at work sometimes here.

Like you! Get a life for Christ sake

You could not see through anything! I thought this was an adult forum, do your parents now you are on it?

When you write PSA is undetectable, is that an ultra sensitive PSA, or a standard PSA?

Ultra sensitive, my comments are made in conjunction with my Whole body MRI, but I will not attempt to justify something I have no need to do to the people questioning my validity. I thought some might benefit, I did not realise that others are so accusing and damming it’s beyond understanding and I can only assume achieve some benefit beyond debate, I apologise as I know yours is just a simple question.

I have read that a healthy diet is extremely important in cancer treatment. I agree one should know their testosterone level, it is what feeds the cancer cells after all. After radiation the oncologist proudly declared my husband cured! No test or scans...just his opinion! I thought he was reckless in saying that. Like you said, microscopic cancer cells can be lurking where the radiation was not even directed. Two years later, here we are with bone mets in spine, hips and ribs. Also while having no detectable PSA levels during those two years. As the urologist explained five years ago when PSA was 105...cancer is smart. It hides as it adapts to its environment and then again takes hold. It's sneaky that way. The urologist suspected microscopic bone involvement even five years ago. In the U.S. doctors usually ask for a total PSA with testosterone measurment. It gives a more exact prognosis. Low PSA is good, but the testosterone level needs to be known as well. I'm all for using a healthy diet and some suplements, but there are ones that in the long run can be harmful. I am more comfortable with a doctor in control but I also get that some people need to feel in control of the situation. After all, how could years of medical training know more than them? To each their own and self medicating is only affecting themselves. Ones mental state is important too.

Really? Why make assumptions or diagnose a course of treatment? You are not his doctor.

Because Buddy, you were telling someone else what they need to do for a situation that doesn't pertain to him and he didn't even ask about . Also, he explained completely what he was taking for supplements and how often he was tested. He hasn't had a recurrence so why even go into that? Every person is different, every cancer is different. That means treatment varies too. Hopefully he will listen to an actual doctor first. You didn't tell it as your experience, but as advice for another.

in reply to

I'm new here, but from what I can see there is plenty of advice going around on this forum. I think people can figure out what's useful for them.

Hey Milly - thanks for posting. I appreciate hearing of what other men are doing. It’s hard to make sense of any one result outside of a science-based framework. But if your doing good that’s what counts. Keep monitoring your PSA as you move forward

Milly2003 profile image
Milly2003 in reply to Chugach

That is the problem, but even in a science based framework you may not know what worked for you, it could be all of them.Good luck

Awesome news. My husband is on ADT and many of the supplements you are taking(and others) Im meeting someone about getting cannabis for him. I was told different strains work best for different cancers. I dont know why people always feel they have to take sides when our goal is all the same. Both methods of attacking this shitty disease have their merit and synergy is fantastic when you can find it. Thank you for posting all this. It gives me hope and reassurance that we are taking the correct approach by using everything that might help. Keep it up! Good luck and congrats!

Milly2003 profile image
Milly2003 in reply to Redgold

Thank you, I have not heard of different cannabis for different cancers, I used THC cannabis the aim is to take 60 grams at a gram a day, it’s very important to build up the intake slowly.Rick Simpson has video’s on YouTube and online, again just explains what he had done.

I hope your husband responds well to whatever treatment he has.

Good luck.

Thank you! I didnt know he has videos. You used oils?

Yes, it’s cannabis oil and quite thick liquid, I put it in tomato juice or something similar as it tastes awful.

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