Thinking of stopping hormone treatment as it is so awful.Really interested in other peoples experience of alternative treatment
At diagnosis my psa was 78 and i have got it down to 0.3 on diet, nutrition, supplements, and hormone treatment.
Very interested to hear from anyone who may have gone down a different route than the nhs 3 treatments and denial of anything else?
From PSA 78 to 0.3 ....with diet, supplements and hormones ...that is an impressive result. This itself proves that it is possible to slow growth of PCa with right diet and exercise.
I am a believer in complementary treatments along side medical treatments..blended carefully and rationally.
Would like to know more if you can share what were your interventions to get PSA from 78 to 0.3 ? Thanks for sharing.
I was introduced to a man who cured himself 25 years ago having been told to go home and get his affairs in order.
And have met others who have had great results from life style changes, when diagnosed i had discomfort where the cancer was putting pressure on my bladder.
3 months on i really do not believe i have cancer, but as my psa has fallen so dramatically they will not give me a scan as and i quote i am getting better
Of course this could be a false dawn... but i am gaining weight, feel and i understand look very healthy
I'm new to Pca.... however in my opinion I would stick with your current regimen which has produced significant positive results. Ask your oncologist if there is something they can prescribe to help you get through the hormone treatments.... (low dose prednisone, low dose oxicontin/oxycodone etc... )
Liposomal vitamin b and mineral complex,Liposol vitamin c , Lugols lodine solution, vitamin D3 vitamin K2 and niacin tablets
Diet of no dairy, no sugar. No wheat but lots of fruit, nuts, pommigranite juice, ginger, cumin, turmeric,and recently liposomal glutathione.
All i can say is that it has worked for me at the moment
Wow....Your diet looks very similar to mine...I eat one cruciferous veggi each day.(Radishes, Cauliflower, Broccoli or Cabbage) Drink green and black tea daily,
Lots of veggies and fruits, leaves and roots every day...only 2 breads in a day...
Difference with your diet and mine is that I do eat a big bowl of fat free, home made yogurt in breakfast. Extras are bitter almonds, pistachios in very limited amount.
Also a plethora of herbs and spices such as cloves, cinnamon, saffron, black-pepper, peppercorn, cayenne pepper, black cumin, turmeric, ginger, onions, garlic etc.
Just increased Vit D intake to 10000 Units a day plus sunbathing. Icing on the cake is my 5 miles a day brisk walk every day. Distance measured by FitBit app.
I too have had the same results, workout 45 minutes a day for the last 8 months , cut out red meat and mostly eat vegetables protein shakes and calogen. Only problem is even with high protein and workout I am losing muscle mass. I guess it would be worse without working out. Lupron is horrible but a necessary evil
Yes I hated Lupron and it’s ilk and switched to estradiol patches in early 2019 because of way fewer side effects and no need for intermittent ADT which didn’t work for me anyway.
I have been thinking of not having the next hormone injection but will look at the estradiol patches.
Thank you for that.
Break60, I still have to find out why estrogen patches will have less side effects than Lupron?
They both work by lowering testosterone to near zero. And most of lupron side effects are consequences of low T. Can you enlighten me about this.
Do not want to digress from original topic of role of diet, supplements and other complementary interventions. Lets continue with that.
I was on lupron for 8 months and off of it for last 5 1/2 months. Using a lot of anti cancer foods and exercise...so far I am doing fine...fingers crossed !
My advisors do not believe that testosterone is the issue, it is at its peak between the age of 17 to 25
Prostate cancer normally effects men much older than that but i really don’t know, but at least 3 advisors have told me that testosterone is not the problem it is widely considered to be
Well...proof is in the pudding..if your PSA has come down to 0.3 (with intact prostate)
and you are feeling great..then whatever you are doing is working.. PSA is the biomarker the entire scientific community all over the World use to know extent of active prostate cancer cells in the body.
What is your testosterone level ?
I really am struggling with the next hormone treatment, i dont want if and dont think i need it... but who knows
Refusing chemo wa a good move as with the current virus infecting the world i am very glad my immunity has been increased as opposed to Being decimated by chemo
The body will heal itself given the tools to do so i belive
We have right to choose our treatments based on full knowledge of all kinds of treatments available..SOC or No SOC.
One year ago when I was diagnosed, I too refused Chemo and Radiation..I also think it was good decision. Lupron plus complementary interventions got my PSA down from 830 to 0.2 in 9 months.
My humble suggestion is to monitor closely PSA, ALP. Blood counts and Metabolic tests.
I test PSA, T level. ALP level, Complete blood counts and Comprehensive metabolic panel almost every 3 weeks to know the status and activity of cancer cells. I often pay out of pocket for frequent lab testing as Insurance only allows it every 2-3 months.
Do you go to the Oncologist for the blood tests or physician? I have only seen my urologist and radiation oncologist for now.Not sure which dr is the one to go to for blood tests.
I am looking into finding a medical oncologist.
Thank you
Both, but i don’t think it matters as the tests are all carried out at the same establishment i believe.
My Insurance is from a major hospital system which also , has a cancer institute attached to it.
I go for follow up once every six weeks to medical oncologist and first thing before even seeing her, the protocol is to get CBC and CMP.. Report comes in about 15 mins and then, we discuss further treatment issues looking at fresh numbers of blood tests.
Insurance permits PSA and free T every 3 months.
In between these appointments, I go to a walk in lab and order for myself PSA, Total T, CRP, LDH, prolactin, Estradiol, DHT and urinalysis. . I calculate N L ratio and PL ratio from CBC numbers every 3 weeks.
Every 6 months, I check Lipid profile, Thyroid panel ,EKG ...and I keep close track of all lab numbers especially this time as I am in OFF period of Intermittent ADT for last 6 months.
I think your main doctors should be your primary care doctor and a Medical Oncologist. Urologist..only if you have ongoing urinary symptoms.
I went off Lupron and had cancer in spine and hips radiated. It worked and then came right back. Back to Lupron, cancer wentg away. what also came back were weight gain and suicidal thoughts associated with Lupron
The pattern of your body's response to lupron indicates that your cancer cells are mostly androgen sensitive. And this is a good news. Because the more cells are androgen sensitive..easier to kill them with lupron. The remaining very small number which remain are androgen resistant and they take many years to grow and cause problems.
My cancer cells responded to lupron/zytiga just like yours...A drop of 99.9 % in PSA within 9 months. T was annihilated...a whopping decline from 705 to 1.0 (99.9 %) within 9 months.
When you went off lupron, how long it took for PSA to rise again ?
I have not stopped, due another jab in a month and just a thought i would ask if anyone else has stopped this typeof treatment but it seems to be very well supported.
Milly2003, This is undisputable that we have to absolutely use Lupron type meds and bring our PSA to as low as possible.
Very low PSA (less than 0.2) means most of the regular cancer cells have died. However, a tiny number may remain and possibly can grow again.
Mu opinion is to continue hormone treatment but also use diet, exercise and other complementary stuff to preserve your body's ability to fight this disease and tolerate future, stronger treatments if you need them.
The most common thought is you need more ADt than one shot to put down apc . But ,anything is possible ?
Sorry just noticed this, i have no idea what my testosterone level is, how do you get it checked?
Very important to check T level. There are two different ways to check it...(1) Total testosterone (2) Free testosterone.
Free testosterone is approx. 2 % of total testosterone, so you can calculate it yourself .
Free testosterone test costs about 70 to 80 dollars whereas Total testosterone costs about 20 to 30 dollars. You can try Walk In lab or Directlab (online labs) if you are in USA.
With hormone therapy plus comp therapy, if your total T level falls below 20 ng/dl then you can hope to live many years..even 8 to 10 years or more as Lowest level achieved of T and PSA indicate a longer survival. You are already doing very well by achieving PSA 0.3
Dam ! You’ve learned all! You’re smart ? Thanks
If you are exhausted it’s where they like it. Less than 3
✋. Less than 3 , that’s me! 😷😳
I was asleep for 2 years at less than 3. Figured out lately that my unknown A1C of 10 was a big part of the fatigue. Better now at 6.6. Much better.
6yrs for me at 3.
It is well documented that bringing testosterone to castrate levels will stop prostate cancer from growing for months to years until eventually, the cancer becomes castrate-resistant. So, once prostate cancer is present, testosterone fuels its growth, and removing testosterone stops its growth. I think the debate is if testosterone is a cause of prostate cancer, and it is looking like low, rather than high levels are a greater risk factor, so it doesn't appear to be causative.
Research studies found that if one has high testosterone (over 500) before PCa diagnosis, he usually has less aggressive cancer. And those men who have low testosterone (less than 300) before diagnosis ,they usually have more aggressive cancer.
That’s what one of my docs says. Others say you are going to die quick. I’m at 140 and have felt much more fatigued so I’m almost happy. Do not confuse that with happy.
"... why estrogen patches will have less side effects than Lupron? They both work by lowering testosterone to near zero. And most of lupron side effects are consequences of low T."
Well, Lupron side effects are consequences BOTH of low T and of the low levels of E2 that result (since estrogen in men is aromaticized from T).
I won't/can't sort out exactly which problems arise from a lack of T and which from a lack of E2, but the former includes loss of muscle mass and the latter includes loss of bone density.
Both estrogen monotherapy and bicalutimide monotherapy avoid that deeper depletion of E2 in men that results from Lupron (and the like). So the side effect profiles will be different, and hopefully less severe (so they say).
Thanks. I understand your point and its a valid point based on aromatization mechanism. Testosterone depletion does cause both muscle loss as well as bone loss. So its possible that bone related side effects are less with E2.
I am thinking of possibility of combining lupron and E2 patch...what can be problem with that? OR, to use E2 patch while OFF of lupron during Intermittent ADT which I am currently going thru.
But then , I am in good spot at this time..PSA 0.2, ALP 71, Bone Density almost normal. Debating ..is it needed to add E2 patch at this time or wait till PSA rises.
Yeah, I can't answer that... only familiar with the concept. Estrogen patch or gel as monotherapy shoots for getting E2 levels to that of premenopausal women, but not sure about the lower doses for men on ADT. I do know that Snuffy Myers did that with some of his patients.
The PATCH trial in the UK have so far shown that the patches as monotherapy really help with bone density, but not sure I recall reading about any effects (good or bad) on bone mets themselves.
I haven’t had a raise in six years . But the side effects of no t are getting to me . I’m searching for help .
I do not recommend going totally alternative supplements. If you feel you have to give up Lupron then go to a milder ADT drug like casodex. Keep up your vitamin D3 level and drink lots of green tea. Get some decent green tea i.e. from Japan.
Other supplements to look at are IP6, selenium and vitamin C in powder form.
Thank you! very useful imformation.
People who do alternative therapies are twice as likely to die compared to people who don't.
pcnrv.blogspot.com/2018/07/...
There is no credible evidence that diet and supplements can help. In fact, where there is credible evidence, so far it shows that they don't help.
Instead of finding miracle cures on the internet, consider identifying the side effects of hormone therapy that bother you most and discussing what can be done about them. Most of the side effects (e.g., hot flashes, loss of lean muscle, fatigue, etc.) can be managed.
I have been impressed with some people i have met who have survived terminal diagnosis for decades on alternative treatments and whilst i fully accept it does not work for everyone...we all need a bit of luck
Anecdotes are not evidence. You have no idea what their situation really was or what else they were doing. You only know what they choose to tell you.
Maybe, as i have said my psa has been below 0.6 over the last two tests.
I feel very well indeed and i am not sure if i had received chemo that i would feel as well as i do.
I also did not mention that since Diagnosis I have followed Rick Simpson
We always end up with this "alternative treatment" debate..because of wrong choice of word by someone....In place of "alternative" we need to say "complementary"
Yes ..there is a lot of evidence that complementary interventions help....by boosting body immunity, by keeping systemic inflammation very low, by keeping physical strength intact and by general sense of well being caused by exercise etc.
Your "onco- Industrial complex" which has only one goal..how to maximize profits by selling more and more toxic treatments at shamelessly high price...taking advantage of people's misery . It is a rotten, pathological capitalism..self centered narcissism promoting system.
Do you expect them to finance clinical trials which show antioxidant, anti inflammatory foods slow cancer ? Will they finance trials which show daily exercise prolong life of prostate cancer patients. No Way...it can potentially cut into their billions of dollars of profits...Its in their interest and interest of their salesmen to keep people ignorant about .complementary treatments. Do Not think anything other than Cut,,Burn or poison !
The studies they promote about complementary treatments are totally biased and misleading. But, more and more people are understanding their greedy game and waking up to the fact that proper diet, life style, exercise etc are very important facets of any .comprehensive treatment program for any chronic illness.
As you can see from that reference I posted, it is not just because of poor choice of words. While those who do "complementary" treatments do not fare quite as badly as those who do exclusively "alternative" treatments, they still do much worse than those who opt for standard of care.
Good eating, not smoking, and exercise are not complementary treatments. They are what we all should be doing, healthy or ill.
I do not share your paranoia about pharmaceutical companies. They are in it for profit, but they make more profit by coming out with better products. It is a highly competitive industry, and they have an interest in producing drugs that maximize efficacy and minimize toxicity. Big Pharma has created leuprolide, degarelix, docetaxel, cabazitaxel, abiraterone, enzalutamide, apalutamide, darolutamide, Provenge, Xofigo, PARP inhibitors -- just to name a few. There are hundreds more in the pipeline. Could they do better? Probably. We should all recognize that research methods and reporting have improved a great deal over the years.
I don't expect a drug company to finance research on drugs they are not developing. That is a job for NIH, DoD, and other governmental institutions (e.g., STAMPEDE, SELECT) and for supplement mfrs (e.g.,pomegranate). In fact, the NIH SELECT trial proved that misguided people who rail against antioxidants and advocate supplements that do so were doing harm to prostate cancer patients. It led to a better understanding of the importance of ROS in controlling cancer. I am chagrined by uninformed patients who still advocate anti-inflammatories even though level 1 evidence has shown they do not help. Patients often have no knowledge of biochemistry or research methods. These same uninformed patients advocate complementary treatments without clinical evidence.
Thank you for this it is very intersting, I have heard a lot about conspiracy theories but i did not subscribe.
However when given my diagnosis i asked anout diet drink etc and was told dont worry, eat what you want.... i would have a drink if i was you, was one NHS spealists commented
i did not know anytimg about cancer 6 months ago but i very soon realised that this was wrong.
I think you have enough to worry about without worrying whether a glass of diet coke will harm you. Whatever harm diet may have had took a lifetime to occur. No food or drink you use in the short-term will have any effect.
By complementary treatment, I mean nutritious ,right kind of diet, regular exercise, keeping normal body weight, not smoking , no heavy drinking, relaxation techniques and so on.
And they do COMPLEMENT the standard medical treatment. If you have no objection to my definition of "complementary" then, I have no problem with your view.
Systemic inflammation causes as well as promotes prostate cancer...there are dozens of studies proving this connection. Pjoshea has already posted many of these studies on this forum. I have a pile of studies showing close relationship of prostate cancer and chronic inflammation...too many to put on this forum.
Promoting medical treatments is fine but not giving the full and complete picture to
patients and to scare them saying to all of them they will die within 18 to 20 months is what I am criticizing. Fear-mongering is inhuman. PCa has many shades..very mild to very severe and in between.
Not doing a DEXA scan and subjecting people to toxic infusions causing risk of broken jaw is what I am objecting to. Pushing overzelous, unnecessary treatments
whether patient needs them or not is unethical and wrong. Therefore, I am supporting the concept of "comprehensive" treatment.
I must apologise for my terminology, this is all new to me, you are far more knowledge than i have, your comments are very helpful
Do Not worry...about words..words are just words ..its the intent and truth which matters...You are on right track with comprehensive treatment which includes all modalities...your results so far are very good and I anticipate long life for you.
"And they do COMPLEMENT the standard medical treatment. If you have no objection to my definition of "complementary" then, I have no problem with your view."
The definition used in that study was: "Complementary medicine was defined as use of “other-unproven: cancer treatments administered by nonmedical personnel” in addition to at least one conventional cancer treatment modality, defined as surgery, radiotherapy, chemotherapy, and/or hormone therapy. "
"Systemic inflammation causes as well as promotes prostate cancer...there are dozens of studies proving this connection. Pjoshea has already posted many of these studies on this forum. I have a pile of studies showing close relationship of prostate cancer and chronic inflammation...too many to put on this forum."
One must be careful about using the word "proof." Broad brush statements with careless word choice can harm patients. Two major randomized clinical trials (STAMPEDE and TROG RADAR) have proved that powerful systemic anti-inflammatories by themselves have no effect on progression or survival. Although I have asked Patrick to learn about "levels of evidence" and GRADE, he has not done so, making his posts fairly useless. Inflammation does promote prostate cancer, but it also helps contain prostate cancer. It is because you and Patrick fail to understand that it is the balance that is important that you reach erroneous conclusions. It is also distinctly unhelpful to patients when posters here show incomplete evidence. Some treat evidence as a thing to reinforce existing biases rather than to provide a complete, sometimes seemingly contradictory picture. Some studies (most of them, in fact) only have the purpose of generating hypotheses for further research. To regard those studies as proof of anything damages patients who may believe it.
I very much agree that patients should be equipped with a full and complete picture. I have been fortunate to meet doctors who believe in that and in shared decision making. I recognize that in community practice such high standards are not always met.
I also don't understand why patients are prescribed bone strengthening agents without a DEXA scan. It is cheap and easy to obtain.
Has anyone reviewed the “My Cancer Story Rocks” website or joined the same title (thread) on Facebook? Just looking for some feedback on the protocol and success stories for a variety of cancers including prostrate.
Yes, I joined. There are very many interesting success stories being related that are far from anecdotal.
I have now bought Fenbendazole and added it to my treatment plan.
On the negative side, there are almost always a daily post from a patients relative saying their loved one has passed on, so obviously the protocol doesn't cure all.
I recommend joining the Facebook group and do some research, there are fascinating results being related and too many good people posting to not give it some merit.
By the way, absolutely no side effects for me with the Fenbendazole.
Glad you jumped in...to many people look for a magic bullet....Blue Skies
At diagnosis my PSA was 5,006 and hormone therapy with Lupron resulted in a PSA of 1.0 within a very few months. My diet, nutrition, and use of supplements were pretty much unchanged in the months before, during, and after. Anecdotally, I account the great majority of my response to the Lupron and a favorable prostate cancer response, rather than the diet, nutrition, or use of supplements. Over the past 61/2 years my general approach has been to learn to live with or to ameliorate any side effects related to treatment(s), reporting and asking my doctor about any symptoms.
For some men there is good science for having things like Lupron + Early Zytiga or Lupron + Early Docetaxel up-front, in terms of getting a better long term Overall Survival at the other end, while being younger and in better condition for those treatments, rather than leaving some treatments for much later when one might be in worse shape. Again, ask your doctor.
Keep us updated on exactly which side effects are bothering you the most. There is lots of experience here for how others have coped with similar things in the past.
Charles
The hormone treatment works for me
I was in awful pain before my hormone treatments began
I am so grateful
It doesnt seem to appeal to all of us
But the options available to us today are astounding
Throw everything at it I was told
Everything good that is lol
My journey just begaun
But I am seeing qualities in me I am so proud of
I have been on hormone treatment for 5 months and had no issues until 3 weeks ago, i guess it is a cumulative effect.
I have also tried everything and i am pleased with the results, however a variety of treatments leave us not knowing which one is working, maybe they all are
WHAT (if comfortable listing) was your biopsy report results??? I could not find. TIA
My saturation transperineal 3D Prostate Mapping Biopsy ( of 100+ core readings) resulted in Gleason10 confined to right half of prostate with a low PSA of 14+.
My biopsy was aggressive cancer scoring 9 on the NHS calculation
But since then i have had no other tests
I was diagnosed almost 2 years ago with over 20 Mets. I started Lupron and Zytiga immediately. My PSA for the last year has been 0.02. My diet is a little healthier but is pretty much the same as before diagnosis. I have power surges (hot flashes) but I deal with them with a fan by my favorite chair, a fan on my night stand and a macho determination that the surge is not going to beat me. I think of my Father who fought in Korea and Vietnam Nam and think that these little side effects are nothing compared to what he and his fellow soldiers and current soldiers of every nation have and are going through.
In the time since diagnosis I have SCUBA dived, rode both dirt and street motorcycles, snowmobiled, skied, raced my Vette on the Sebring track, and in July I am jet skiing from Ft Lauderdale to Bimini Bahamas, with my two sons. I will be 70 in 6 months.
When I was first diagnosed I cried, juiced and cried some more. But after a couple months of that, I found this site. It really has been my main source of information and comfort. I personally attribute the majority of my current health to the Lupron, Zytiga and Prednisone treatment plan. If there are some side effects I agree with Tom Petty - DAMN THE TORPEDOS!
Good luck to you!
Mildly, I am a stage 1V survivor of 7 years thanks to Lupron and Exgever injections,I know they saved my life. I began with radiation after being diagnosed with Mets to bones, I do believe my oncologist got it right. Now a new adventure, bladder cancer. Not going as well as prostate but fighting it all the way. Now on immunotherapy. Listen to your oncologist my advice.
Sorry to hear of your new Battle, as i have said going from 78 to 0.3 on the psa test means something is working and it may well be the hormone injections...
Good luck
Greetings Milly, Would you kindly provide us with more bio about yourself. Age? Treatment center(s)?, Doctor's Name(s)? This info helps us help you and helps us too. Thank you!
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 05/24/2020 1:01 PM DST
John
57 years old, diagnosed 6 months ago, Grade 9 cancer and another area of concern in my hip, it was suggested that i went onto a hormone treatment programme, they also wanted me to have chemo straight away, i refused this and two date i have just had 2 hormone injections, other that this all treatments are those advised by others,
Liposomal vitamin b and mineral complex, big quants of vitamin C, Liposomal glutathione, vitamin D, transdermal magneium choride, Lodine solution, fermented cod liver oil.
Diet, no dairy, no sugar, no processed meat, lots of fruit, almonds, all nuts, a lot of meals with bone broth, as much offal as i can stand, fermented foods, green tea, white tea, loads of fresh ginger, tumeric
I have forgotten some i am sure, i have also made my diet as alkaline as possible.
I was having a sauna everyday As i was told cancer does not like heat?
Thank you for your quick and detailed reply. Some of us are into diet and supplements, others are not. I'm in the other category...But whatever works for you then go for it and I hope you beat "the beast"... Just keep on keeping on.... and keep posting here for good information and do not get discouranged if some members do not agree with you. You are the owner of you!!! (BTW I assume you mean Gleason 9 and that you had a biopsy of your prostate)....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 05/24/2020 1:46 PM DST
John
Many thanks, i am in no way bothered about opinions that differ from mine, as you say each person has to work out what Hopefully works for them, believe in it, and stick with it.
Whats works for one will not work for others, i really do not know about the biopsy, they just said a grade of 5-10 and mine is at 9
Not been totally impressed with some elements of my treatment so far by the national health, but i am a fan and supporter.
24 years ago I was told "There is nothing we can do for you. Go home and make the best of your remaining time." This was from a world famous cancer center. I went home and made the best of my remaining time searching out the best form of treatment available. I went with SOC, EBRT and Bracy. Was good for 15 years then BCR. I have been fighting recurrence for the last 9 years with SOC. Still going strong with no visible mets. there is something to say about SOC.
I’m pulling for you ! 👏🏋🏽♂️
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