Please share protocols, diet, repurpo... - Advanced Prostate...

Advanced Prostate Cancer

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Please share protocols, diet, repurposed or natural supplements for aPC!

Diana2727 profile image
68 Replies

Hi all!

I've been reading and texting a few members of this great community, but couldn't get an answer, hence I am posting this questions here.

I am searching to find the best protocol for my dad, he is 68 years old and has Gleason 9, some mets to pelvic nodes and possible ribs. He is since March on Apalutamide, Goserelin and Zoledronic Acid. He is as well on some new supplements: mushrooms, lycopene, D3, Omega3, sulforaphane, Melatonin 20mg and a few more. He had external radiotherapy but had to stop after 10 sessions, as his white cells were dropping. His oncologist told him not to take any supplements, but I convinced him to see a natural oncologist. His natural doctor told him to go vegan, alkaline diet and have fish max 3 times per week. I have read a lot about Ivermectin and Fenben on facebook - Joe Tippens and Fenbedazole group, and I am new to this group.

I would like to know your experience with:

- Ivermectin, Fenbendazole

- Melatonin (as there is a study that doubled life expectancy for PC)

- any advice on increasing pallets count - lymphocytes and neutrophils are dropping every month.

- diet - how strict are you with carbs? what about fruit? what about fish or eggs?

I've read that Papaya Leaf Extract would do good for white cells, and Hawaii brand was recommended by a few members on a FB group. Unfortunately, we are based in Romania and many companies do not ship here or have a big shipping fee.

I am looking forward to hearing your stories. Any ideas, advice, doctor recommendations are much appreciated.

Thanks for sharing and God bless you!

Diana

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Tall_Allen profile image
Tall_Allen

Having lived in Romania, I'm sure some tsigani would be glad to take your money.

Diana2727 profile image
Diana2727 in reply to Tall_Allen

Hi, Allen! Thank you for taking the time to leave a comment. As an only daughter, spending most of my time (when not working for the US corporation) trying to support my dad's battle, I would have many things to say to you, but I just wish you nothing but the best.

TC007 profile image
TC007 in reply to Diana2727

This guy was a outliner and luckily got cured with medical intervention. He still Don'tDo Understand the pain of desperate patients and family members who don't have any options left. Someone tell him that he is simply lucky and his results are yet to be replicated in large number of patients

Lizzo30 profile image
Lizzo30

Hi Diana My best advice is your Dad has soya milk now instead of cows milk

Limit meat - just chicken and pork occasionally - no red meat

My best tip is give your Dad evening primrose oil capsules every day - my husband and myself have 2 x 1000mg capsules a day

Also turmeric and organic green sea kelp ( not brown sea kelp )

Oranges and red grapes are good too

If your father likes a drink of alcohol then red wine is best choice for him

I was your age when my Dad got prostate cancer

Diana2727 profile image
Diana2727 in reply to Lizzo30

Thank you very much for your message, Lizzo! I didn't allow him soya milk, even if labeled organic, as I was afraid it can be modified or would have some other bad stuff in it. I'll read a bit more on this, thank you.

He is off diaries, his doctor told him he can eat once in a while some goat cheese. He is mainly on plant-based food, not even chicken. Fish - wild salmon, once a week and once a week organic egg. I've read that prostate cancer feeds as well on fat and protein, on top of glucose.

We have grapes, organic, and he eats some. Wine, he'd love a glass, but his doctor told him not to drink at all.

His PSA has decreased from 22 to 0.117

Lizzo30 profile image
Lizzo30 in reply to Diana2727

Hi Diana this big drop in PSA is most likely due to your Dad's ADT treatment ?

But ADT may have an effect on your Dad's quality of life

I think 20mg of melatonin is too much ?

5mg maximum is better I think ?

I still say Evening primrose oil is good at impeding progession of prostste cancer and has zero side effects

Reservratol in red wind has proven benefits

Also pomegranate can work extremely well on some men - are pomegranate part of Romanian cusine ?

Diana2727 profile image
Diana2727 in reply to Lizzo30

Hi Lizzo!

Definitely his decrease in PSA is due to ADT. He has flares and some mood swings, and tries to cope with them. I would also love some advice on what can help him, as he doesn't like to complain. Increasing his quality of life would be great, but I don't know a solution now without ADT.

20 mg of Melatonin is not too much, I think it's too little, to induce apoptosis - cancer cell death.

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

Here are more info about high doses of Melatonin that create . youtube.com/watch?v=Roh4lQX...

Doris Loh has focused her research on Melatonin and other articles show that there is 300mg dose protective for radiation, before doing a scan, plus as a cancer treatment, doses can be as high as 3000mg.

It's the first time that I am hearing about Evening primrose oil and I will search more information on this. Thank you!

Pomegranate - YES, it's part of his supplements.

Teufelshunde profile image
Teufelshunde in reply to Diana2727

Yes, I take 120mg.

Lizzo30 profile image
Lizzo30 in reply to Diana2727

Hi Diana Evening primrose oil is a recent discovery of mine that I am quite excited about, the reason why Evening primrose oil (EPO) is good for prostate cancer is bc it contains gamma linoleic acid which is a natural 5 alpha reductase inhibitor

5alpha reductase is an enzyme that converts approx 10% of mens testosterone into dihydrotestosterone (DHT) it's DHT that causes prostate cancer not testosterone

So stopping the synthesis of DHT is a big deal but EPO does even more than that - the gamma linoleic acid in EPO blocks leukotrienes which play a big part in causing and progressing prostate cancer

Tinkudi profile image
Tinkudi in reply to Diana2727

have you consulted Doris Loh

Lrv44221 profile image
Lrv44221

Hello Diana,

I’m so happy you’re helping your father with this. I am a certified nutritionist so I don’t have the answers you are asking about the drugs. I eat an alkaline diet and find it easy as well as healthier. Mainly, i want to also say the nutrients are well respected by many and I think 🤔 you are wonderful asking about how to help your father. I hope others in here can help you more than I.

Believe in yourself and your ability to help your father. “Belief shifts biology”

Diana2727 profile image
Diana2727 in reply to Lrv44221

Thank you for very much your encouragements!

From your perspective, what kind of water should he drink? Is distilled water making a difference? Or Alkaline water?

"“Belief shifts biology” - Yes, I truly believe in this, and I got my parents two books from Joe Dispensa - Supernatural and You are Placebo.

All the best to you and God bless you!

Lrv44221 profile image
Lrv44221 in reply to Diana2727

Good morning Diana,

You are an amazing person and I am so glad 🙂 you’re doing great things with your father. I don’t think it matters about the water. Use the water he likes and will drink. Those books 📚 sound perfect and I’m going to buy them for myself as well. My husband and I are the same age as your father. He has Pca and I have health issues too.

For us , and perhaps you as well, how we think 🤔 nature and how we believe, makes sense 💜💜💜 also those books by Dr joe should have some words of encouragement explanation and wisdom

I hope that you have a great day and maybe we can talk again.

lrv

Lrv44221 profile image
Lrv44221 in reply to Diana2727

i forgot to say my trust in the medical profession is zero

Drugs are not the answer ( just my opinion as well as my husband)💜

Diana2727 profile image
Diana2727 in reply to Lrv44221

This is so sad. Gets me frustrated and feeling alone. The support groups are doing what a smart doctor should be doing - searching the novel therapies and trying to find individual protocols. Unfortunately, they have so many patients, they are tired and brainwashed. I still have faith that I will find a fantastic doctor at some point and he/she will restore my faith in this profession :)

You are such a warm, genuinely friendly person, and I appreciate all your kind word, and sharing your encouragements. Dr Joe's books make you believe that we are supernatural beings, capable of amazing recoveries, with the proper mindset. Also, I love listening to Anita Morjani, and her wisdom, after going thru terminal cancer, NDE and back on planet Earth. We just need to remember in our darkest hours that we're here together, not alone!

I'm wishing you all the best to you and your husband!

Lrv44221 profile image
Lrv44221 in reply to Diana2727

Hi Diana

yes i have faith you will find a dr that can help you. In the meantime you can continue to receive help from those of us on here, I also like Anita morjani. yes in the darkness light persists

I’m by a reader like you

I am related to Lord Byron so I grew up reading his works. A particularly good poem relating to nature is : “there is pleasure in the path less woods” I wish i knew how to take a picture and send it with thi. I have that poem on my wall with paint 💜💜💜

Derf4223 profile image
Derf4223

Exercise

kainasar profile image
kainasar

No reason not to consult a hematologist. Also much can be learned from homeopathic md's and their community.

Diana2727 profile image
Diana2727 in reply to kainasar

He did see two hematologists but didn't come up with a solution. My trust in the medical system has become so low, that I can find from an AI bot better solution.

TomsD1 profile image
TomsD1

PomiT supplement is good. Get his liver function and free testosterone monitored. Consider completely plant based diet. Meditation. Massage.

Irun profile image
Irun in reply to TomsD1

Have you looked at pro phenol? It has the same as pomi T plus peppermint and cloves but in the uk at least much cheaper , I have been using for years now T4n1m1a 10 years after diagnosis G9 PSA 342.

And as another said , exercise !!

Samrecan profile image
Samrecan in reply to Irun

Could you please provide some more details like dosage.

Irun profile image
Irun in reply to Samrecan

I take 1 a day. It says 2 however I have all the ingredients in their real form so I see it as a supplement to the right diet.

Diana2727 profile image
Diana2727 in reply to TomsD1

Thank you! He did some meditation; I will remind him to up it in his routine. Massage - no but could be a great idea. I am worried that on a fully plant-based diet he will not get enough protein and also, he will lose the joy to leave. The is a foodie, and maybe in a few more months he can get to be fully vegan, but weighting the "expense" and the benefit of it, I am not sure. I had a colleague that she had her mum, a cancer patient, on a very restrictive plant based diet. Her mum was craving different food, and she always convinced her not to have it, to keep to the "correct diet". Her mum passed away and her biggest regret was that she pushed her mum to keep a strict diet that made her unhappy. It's such a fine line and it's very difficult for a caretaker to deal with this. How impactful is the diet? How impactful is keeping a diet that make you unhappy? I don't know the answer...

London441 profile image
London441

Help yourself to all the foods and supplements you would like him to try. Exercise is of far more benefit than any of it.

Diana2727 profile image
Diana2727 in reply to London441

Thank you! He has a heart condition, and his cardiologist told him, before having the PC, that he should just walk and nothing more. I think he is stuck with this in his mind, and he doesn't exercise in the gym, but walks over 10k steps a day. When you say exercise is it weight training that you are referring to or cardio? Is there an app that I can search for / YouTube videos or just find a trainer in the gym?

London441 profile image
London441 in reply to Diana2727

I’m not a doctor, but I strongly suggest you get a second opinion on the ‘walk and nothing more’ advice the cardiologist gave him. Particularly if the cardiologist knows he is taking Goserelin and apalutamide.

This is because the extreme testosterone suppression these drugs cause waste muscles, which needs intervention via resistance training. If allowed to proceed unchecked you will regret it.

A trainer is a very good idea, especially one who has working knowledge of his medical condition.

Adventure18 profile image
Adventure18

I suggest reading the book How to Starve Cancer. It has alot of ideas that are worth while. I disagree with only 5 mg of melatonin. Currently I’m at 60mg and many are taking up to 200 mg daily. It’s worth it.

Diana2727 profile image
Diana2727 in reply to Adventure18

Thank you! I will definitely buy some powder melatonin. Pure Bulk is not available to order in Romania, but RawPowder is. What brand are you using? When did you started? Did you see any results / side effects?

About Jane McLelland's book, thank you! I am on her group on FB and I am seeing a lot of great success stories.

I recently got two suggestions.

One, from a lady in US that cured her husband in 5 months of stage 4, colon cancer, changing his diet and working with a doctor based in US. I am considering approaching him to create a personal protocol and monitor his reactions.

The second suggestion is from a lady that cured her husband of prostate cancer, just following the protocol given by another lady that read the book, understood it, cured her girl of cancer, and now, for a monthly fee of 250Euros, will guide others with the protocol. But she is not a doctor... Even if I have a very bad perception about doctors, I would like my dad to get recommendations from someone who will understand that he has cardiac isues and two strokes.

Jane's protocol is so complicated that I can't manage it myself, and I need a smart doctor to create a treatment scheme with repurposed drugs for his condition. Do you have any recommendations?

Cape1 profile image
Cape1 in reply to Adventure18

yes, that is the Jane McLelland book and considered the Bible of metabolic approaches

Regarding exercise, 10,000 steps is very good, but I also do weights and HIIT swimming and bouncing/bounding on a mini trampoline. You need to move lymph, as it won’t move itself, and moving lymph is ground zero for the immune system to work its magic.

Diana2727 profile image
Diana2727 in reply to Cape1

Great advice! Thank you!

TomsD1 profile image
TomsD1

Low dose naltrexone for bones too. Is he hard of hearing? Adt has increased depressive and cognitive impact in deaf men. Address social isolation issues.

Diana2727 profile image
Diana2727 in reply to TomsD1

He is hearing very well, thank you for the information.

Graham49 profile image
Graham49

suggest you look at this from the NCI.

Prostate Cancer, Nutrition, and Dietary Supplements (PDQ®)–Health Professional Version

There's also a patient version.

Diana2727 profile image
Diana2727

Thank you, Graham! Is this it? cancer.gov/about-cancer/tre...

I did search, on several pages, plus PubMed, where I find that there is more "positive" or encouraging information.

YC22 profile image
YC22

follow dr William Makis he is an oncologist re ivermectin and fenben

He has done extensive research on the turbo cancer deaths from Covid shots as well.

Also high doses Curcumin and garlic.

Also C60.

Also THC and CBD

My dad was diagnosed in Oct 2021.. PSA at 5000 , paralyzed and given 2 months. He had surgery the morning after entering hospital..

walked after 2 months still does and gardens etc he says he feels better than he has in years almost 3 years after diagnosis

All of his doctors say they are shocked some say he’s a walking miracle …

Yes I firmly believe that there are Gods natural healing protocols and some pharma can help. Faith , belief in healing, whole foods, low processed sugars raw foods supplements can all help .. pls message me for more info..

each person is unique and may need a different protocol.

I wish you the best!

Keep the hope and faith always 🤗

Screenshot
Diana2727 profile image
Diana2727 in reply to YC22

Congratulations on your journey with your dad! Wow, 5000 PSA, it's something. What G was he and what was the stage?

My dad is taking Curcumin, garlic as well. With CBD and THC we don't have a solution.

He is not taking Ivermectin and Fenben yet.

Would love to PM you for more info, thank you for sharing this information!

God bless you for taking such good care of your dad! May he live a long and happy life.

YC22 profile image
YC22 in reply to Diana2727

Thank you❤️

Teufelshunde profile image
Teufelshunde

Get Dr Gregor's book How Not To Die and read the PC chapter and the studies associated. Lot of good info online from docs.

Diana2727 profile image
Diana2727 in reply to Teufelshunde

Thanks for the info. I will search it, but if you should find a link, I would much appreciate it, so I will be sure I get to the recommended book.

NecessarilySo profile image
NecessarilySo

I tried a lot of things and found lycopene to actually help. I focused on lycopene and have essentially rid myself of all aPC tumor pain. I might have actually cured myself but can't prove it. I used low sodium v8 juice four times a day in January and it seems to have cured the cancer but I have developed a problem of kidney stones. Read my bio for more details.

Diana2727 profile image
Diana2727 in reply to NecessarilySo

Congrats on your great alternative practices! Amazing progress! I think I read your story a few months ago when I put my dad on lycopene. I love the magnet and hot therapy, I would love to understand more about it.

NecessarilySo profile image
NecessarilySo in reply to Diana2727

Best way to understand it is to try it. If it helps, your dad should know right away.

tunybgur profile image
tunybgur

TBH, you are better off searching for scientific data relating to this subject that has some research backing it up.

Some of the best stuff relates to starving cancer cells of their favourite foods, Carbohydrate and Glutamine.

Restrict these and the cancer cells cannot grow or spread.

Carbs are relatively simple but it means giving up some things, possibly a near Ketogenic diet, I tried this myself but found that I cannot live without a slice of my favourite bread, but significantly reducing carbs is hopefully enough.

Glutamine is more difficult, but there are ways to reduce this common amino acid.

Exercise reduces Glutamine significantly, but the secret is not to replace it all with protein shakes or energy drinks afterwards, just water is fine.

Just search 'Starving Cancer Cells' and there are masses of data out there, but make sure it's only the scientifically proven stuff you read.

Good luck

Diana2727 profile image
Diana2727 in reply to tunybgur

I didn't know about exercise and glutamine. I always thought that exercise is recommended only for muscular mass, but great info that can stop progression. About carbs, he is not eating normal bread, flaxseed home made bread with rye. No potatoes, but he eats fruit and some rice, occasionally. I find it close to impossible going ketogenic, vegan and not lose weight. He did lose 7kg and should stop doing so.

VLBIV profile image
VLBIV

If you talk to 100 people about supplements, you will get 100 different answers. If that is the path you want to pursue (and even that can be debated extensively), it is good that you are speaking to an "expert", but don't throw out conventional treatment protocols. Many of the standard recommended treatments have proven track records. Be open minded to all qualified input and don't rely on exclusively one voice. Also realize that everyone is different and what works for one person may or may not work for your Father. I'm at a little over two years since diagnosis now and still ticking, so it's worked for me. I wish you the best.

Diana2727 profile image
Diana2727 in reply to VLBIV

Thank you for your comment, I fully agree with it. I'm gathering info from doctors, medical research, personal experiences such as the great ones here, and the basic protocol is the conventional one. Anything else is on top and as an additional support.

Wishing you a long and happy journey.

VLBIV profile image
VLBIV in reply to Diana2727

Your Father is a lucky man. You will help him!

Sagewiz profile image
Sagewiz

I am very strict on eggs and sugars. No alcohol. The best natural supplements that I have researched are pomegranate extract, modified citrus pectin and chlorophyll. There are others, but not as prominent. My Naturopath advises me on my selections and his recommendations. The Moss Report is a good source for researching the history and studies.

j-o-h-n profile image
j-o-h-n

A normal (delicious) Romanian diet.

Good Luck, Good Health and Good Humor.

j-o-h-n

YC22 profile image
YC22

check out dr William li “eat to beat disease”. He helped his mom to heal from esophageal cancer…

Gaden profile image
Gaden

My experience: 70 yrs old now. PC identified in 2002. Had proton rad which reduced PSA from 8 to about 1.4-6. After 3 ½ yrs it returned when PSA crept up to 2.2 Urologist ordered an MRI which turned out clean. However a PSMA/PET showed 3 mets in bones and a couple in soft tissue. Began ADT (1 month Firmagon followed by monthly Lupron shots).

I also concurrently started adjunctive therapy with FLCCC Frontline Leading Edge Clinic which can serve in all 50 states. I am also on Keto diet to starve the cancer cells of glucose and counteract the glucose increasing result of ADT.

After two months combined therapy PSA dropped from 2.2 to 0.23. I expect that it will drop to undetectable (below 0.04) within a month or so. I will then stop the ADT (which I detest) and remain on a maintenance program with the adjunctive meds/supplements.

I am taking 30mg Ivermectin (higher than Frontline recommends but well within tolerance levels), 200mg Mebendazole (human form of Fenbendazole which is formulated for animals), 1000mg Metformin twice daily, 30mg melatonin (slow release), as well as berberine, low dose doxycycline, low dose naltrexone and numerous other OTC supplements. Frontline is also ordering several blood tests to evaluate possible conditions that are often overlooked by traditional oncology care.

I highly recommend Leading Edge (drpierrekorypatientportal.m... The doctors and nurses are highly knowledgeable, very responsive and reasonably priced, although insurance will likely not cover it. Good luck with your father's treatment. You are going the right way--not simply relying on big pharma. There are other complementary (perhaps some replacement) therapies out there that don't involve systemic poison.

PELHA profile image
PELHA

To wean my husband off soda pop we always have brewed green ice tea m.

dhccpa profile image
dhccpa

I eat a whole food plant based diet. Plenty of whole fruit. Very small amounts of fish. Plenty of exercise.

Also do fenben, ivermectin, and a plethora of rotating supplements, too many to list here.

I do regular treatment as well, 6 years now.

Tinkudi profile image
Tinkudi in reply to dhccpa

What dose of. Ivermectin and fenben do you take

dhccpa profile image
dhccpa in reply to Tinkudi

Fenben 700-800 mg twice daily for half of each week.

Ivermectin 18-22 mg 1-2 times daily for 3-4 days per week.

I've varied that here and there over the last 4-5 years, but those are my basic doses.

Tinkudi profile image
Tinkudi in reply to dhccpa

Ok you feel any side effects from these ? You take these while also being on ADT ?

dhccpa profile image
dhccpa in reply to Tinkudi

Yes, I've been on Lupron the entire time.

I had rises in ALT and AST for a month or so, and my PSA rose after about 3 months for a couple of months. Both of those things corrected when I took a week break and never returned. That happened in the first 3-4 months after starting fenben in Feb 2020. No problems since.

Tinkudi profile image
Tinkudi in reply to dhccpa

Thanks. Was the rise in ast Alt and psa mild or a lot. ? Why would psa rise

dhccpa profile image
dhccpa in reply to Tinkudi

ALT moved out of normal range on the high side.

PSA jumped from .8 to 1.3, then 1.4, then fell back to .8 on its way down to all-time low of .5.

lcfcpolo profile image
lcfcpolo

Mebendazole is the human version of fenben, although Jane McClelland advocates that fenbendazole is better. I also take Prostaphane which is basically sulforaphane, quite expensive but this is the only supplement that I have seen which has had a small trial. There was a post the other day about statins and in particular combining with Metformin that have shown some success. Good luck to your Dad and yourself.

Diana2727 profile image
Diana2727 in reply to lcfcpolo

Thank you, lcfcpolo!

I didn't know about the difference between Mebendazole and Fenbendazole. Thank you!

My dad takes sulforaphane, as well.

There trials on Melatonin ncbi.nlm.nih.gov/pmc/articl...

Also, MCP is worth taking a look pubmed.ncbi.nlm.nih.gov/146...

and IP6 ncbi.nlm.nih.gov/pmc/articl...

The problem is that there are so many supplements with good results, and today I talked with a clinic that would test your blood, take cancer cells, and scrub it against all the classic and alternative therapies, even natural ones, and would tell you what is working and what is not working for you. This is around 3000 USD, so quite a lot. Plus some tests for gut, that are around 800 USD. If anyone did them, I would be interested in knowing what and how changed your protocol.

MoonRocket profile image
MoonRocket

I follow the happiness protocol....I eat food in moderation and don't take any supplements. I take enough oral medications, I don't need to take anything else.

The caveat is if one is deficient, then certain supplement to resolve the deficiency.

Diana2727 profile image
Diana2727 in reply to MoonRocket

Thank you for sharing your protocol! Sounds like a great one as long as the Gleasson score is a low one.

All the best to you and much happiness!

MoonRocket profile image
MoonRocket in reply to Diana2727

Gleason 9 (4+5) with a somatic ATM mutation from the original tumor ( I think is rare for ATM mutation). Fortunately I was diagnosed before metastasis set in. I'm not curable but have very low volume of disease at the moment.

Diana2727 profile image
Diana2727 in reply to MoonRocket

Wow! Congrats on having a low volume of disease. I have read that you do a lot of exercise, and that may be a good factor, plus loving your life, that is boosting your immune system. My dad didn't do any genetic tests, as his oncologist said it is not covered, and wouldn't change his treatment.

Are you taking only hormonal treatment?

MoonRocket profile image
MoonRocket in reply to Diana2727

Yes. Only hormonal treatment currently. Was on mono ADT, then the EMBARK trial results were released and my MO put me on mono xtandi. PSA is starting to climb so I'm adding back the ADT (Orgovyx).

A good website to sign up for and listen\watch webinars or ResearchToPractice. Dr Neil Love has interviews and a attends the oncology meetings where the latest research and clinical practice is discussed. He then has sessions where several top pca researchers discuss treating patients in different settings and how they apply the latest research.

Lrv44221 profile image
Lrv44221

hi Diana 🤔 thinking about you

Poem by lord Byron

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