It has been 3 years since I was diagnosed with APC . I followed so called protocols and passed time in inhuman waiting halls and a complete disregard by medical actors under the mask that we are too loaded.
What I learnt is that the whole medical treatment of patients is a failed system, it could be much better if greed disappears.
I never got any useful advice from doctors, felt they are out of touch with upto date know-how. All protocols I knew from the net and from Forums. The medical profession simply played the role of giving prescriptions and executing protocols.
I am a scientist and have spent my life span in the scientific mind set. The medical profession of 15 min consulting and their lack of following science is terrifying.
So let we the patients take our health care in our hands and let doctors be a small part of this life journey.
I would like to know what my fellow patients think about following points:
Epigenetics and possibility of changing gene activities thru :
...chemical medicin...very limited and a small part of my health
... Lifestyle change which medical profession is ignorant of:
Fasting, diet,meditation exercise, supplements.
.. role of methyl donors, methylation adaptogens
..role of Plasmalogens
.. role of telomeres
Cancer is a genetic disease and there is no one gene implicated. We lack so much knowledge about genes, how they work, how they are activated....Moreover we know only 2 % of genomes 98 % we are ignorant which also plays a role we know not.
The approach should be holistic and adaptive individual therapy...not one fit all
Let us all share our journey and learn from it. It is more enriching than the stagnant medical protocols.
So the healing road is through the patients and patient engagement.
Cancer journey is heterogenous and our different opposing opinions are the key.
Nothing against well tested protocols but enlarging this one fit all mindset.
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Karmaji
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And you believe personalized treatment would be more cost effective that what we have now? We prostate cancer patients are for the most part the envy of the cancer patients. It's generally slow growing and very treatable. For those of us in the Stage 4 category there are many treatments to choose from that are effective in providing both disease control and quality of life.
I would be more than willing to wait behind someone with brain cancer. Pancreatic cancer, liver or kidney cancer and a woman with stage 4 breast cancer.
But that's me.
Lifestyle changes should be taken up regardless if one has cancer or not. Of course, that is very personal so by default can be personalized and funded as each person feels.
Hey Karmaji, I'm sorry to hear about your experiences. My doctors paid attention to me and took good care of me. We hug at the start and end of every appointment. Sometimes, they do appear rushed, but I believe they have lots of patients to care for, so I won't blame them.
As to the handling of this prostate cancer, the folks here including Tall Allen, London441, Winkoliu and Nalakrats have helped me understand that:
Exercise is key. At least 5 times per week, including 2 with weight training.
Diet is important. Just diet sensibly, and try not to eat all the crap that's so readily available in the US. The Mediterannean diet is good.
Its important to read information about our cancer, and be active in making the treatment decisions, as part of a partnership with the physicians.
Vitamin D and calcium can be good for those of us on long term ADT.
Ginseng was proven to help energy levels in cancer patients. It's expensive!
Je ne sais pas si j'ai bien répondu à votre question mais j'espère de vous avoir aidé juste un peu. Bon courage
I see you live in Pennsylvania. Me too. I'm being treated out of Einstein Montgomery. No complaints. Dr's have been great. My MO knew my brother and nephew from the lacrosse clubs so we bonded pretty easily.
We have excellent medical system in France and docs are well qualified; But it is the system where docs are trapped and they are not aware of the trap they are in. They have to relax, feel, listen to patients who may be more knowledgable on certain aspects....Life is not rat race but a warm human contact....and sharing...
I doubt that system will ever exist. Doctors don't have time to entertain the whims of a patient. They are there to treat their patients to the best of their ability. If you are not satisfied with your doctor, find another one. It's why the capitalist economic system is by far the best. Freedom of the customer to choose a provider of a service, without government interference, will always yield the best results. If hugs are important to you, find a MO that hugs. Hugs are important but not when it concerns my MO.
Hey Feeling Good. Glad you're happy about Einstein. I did hear good things about their program. I went to Jefferson in downtown Phila based on a recommendation from my brother, who's a prostate cancer coach (non-MD of course). I was very happy with the level of care and the personal touch there. Take care.
Tu as bien répondu...it is great pleasure when we hear positive experience of our friends with medical staff..... However we are going towards AI and patient poweras Dayan Goodenowe wishes ....elaborate blood test with all biomarkers...precise scans and empowering patient with knowledge
A000 You may wish to review TA's updated article on Vitamin D and the possibility of it adding to the mortality of cancer patients. We live in an ever changing world.
Lovable you are Nal ji....That is the mind set what Dayan goodenowe wishes for patient takeover....so keep nourishing our community with your way of thinking.
I often see comments on the forum about the greed and disregard of doctors. My experience couldn't be further from that view. I'm treated at UCLA , and the doctors are salaried. They get paid the same ni matter what they prescribe, or how long they spend with patients.
They are busy, but they spend whatever time I need during my visits. I message my team almost daily, about my treatment and usually get a response within an hour. During my last visit I looked very poor, and the entire MO office swung into action getting me tests quickly. , and reac hout to other members of the care team.
I don't think that I'm an isolated example of how they treat patients, and can't imagine how they can give that level if care to all their patients.
I have have had the same experience as Javelin with my team at MDA. I have been a patient there for 15 years now. The doctors and staff at MDA always include me in the decision making. They are also very responsive by phone and/or messaging. Lots of waiting sometimes but once I am there I have their undivided attention for as long as needed. So terribly glad I was able to go there as my first option all those years ago. I am sure there are plenty of other great treatment centers in the world so don't mean to denigrate any others.
I believe Karmaji is saying that Doctors are tightly packed into SOC box by the system. There are some doctors who are still able to see threw the SOC box and able to think broadly. These are the folks who can deliver COMPREHENSIVE treatment which includes dietary changes, life style changes, physical activity, proper use of herbs and supplements,adequate control of comorbid medical conditions and so forth. I support Karmaji's epigenetic interventions. I will always remain indebted to Guru Nal and Pjoshea who introduced me to this concept of comprehensive management of PCa when I was diagnosed almost 3 years ago. And now, after reading well over 1000 + research papers, my belief that comprehensive treatment is the right way to address our disease has only strengthened. Standard medical treatment are one part of Comprehensive treatment protocol. My MO was reluctant in the beginning but when bombarded with hundreds of research papers and objective evidence.. she.. being an intelligent Doctor.. accepted the path of Comprehensive treatment and now, happily accommodates my requests.
My MO is grounded in SOC, but is open to my trying adjuncts. If I step back and try to see from the doctor"s perspective, what else would I do other than SOC? There is a fundamental problem with my cancer in that nothing works.
I don't fault my doctor for using an evidence based approach. We're all old enough to remember when medical practice was individual doctors taking random guesses on treatment. I had lots of sinus infections when I was young. This made my tonsils swell, since they are the lymph nodes closest to the infection. My doctor came up with the brilliant deduction that the tonsillitis wad the cause and not the effect and removed them.
SOC is grounded in evidence, but it is fundamentally flawed in that the end result is succumbing to the disease. That's why I'm starting my second trial, and I'm open to new thinking. I feel my main role is to open the minds of the doctors to new thinking, but grounded in the current knowledge.
My Onco is so friendly, he is my friend and takes his time...but he knows nothing about nutrition fasting, exercise, meditation, plasmalogens,epigenetics... telomeres , methylation....
Once I am in Remission my docs say goodbye till recurrence .... what a shame....They know nothing about nutrition, fasting, excercise, meditation....as there is no drug to sell....When in Remission, we need more follow up and other type of therapies....to keep sleepy cells sleepy or kill them ...senolytics
When in remission, I have no follow up and no body cares for cause of cancer and how to remove it.
All therapies are there to kill cancer cells along with good ones...
I never saw any trace of medical insight in finding the cause and removing it.
The actual protocols are just bandages and do not remove the cause...
So patient power is required to go to root cause of disease and remove it...
A new reset.....
Once you know the root cause, you will be surprised how easy it is to correct.
Everything should be made as simple as possible but not simpler.....Einstein
Advanced prostate cancer… It truly amazes me how eager patients are to rush off to the next clinical trial offering a cancer “cure” no matter how dangerous and toxic it may be.… And when presented with a basically nontoxic alternative to assist in the modulation of cancer as a disease, no one is interested.
You are a very intelligent and intuitive human being, thank you for your excellent words of wisdom and I truly believe you know what your talking about…
uh, we do not actually without doubt know the cause....do you? why would you expect your Docs to know something that has not yet been conclusively answered?...anyway, once you have cancer, the cause may be relatively unimportant ...you already have the problem, will you just be able to remove the cause and poof, cancer will disappear? we can only dream!!
In the French medical system, do Docs monetarily efrom writing prescriptions???
Most average folks just aren't going to want to engage in the deep dive you have chosen...and obviously most aren't trained at all to follow in your path. Most folks simply have other things to do than self-training to achieve knowledgeable professional status. thus, we have the system we have......and yes, I have many gripes about it...but reality !!!
I’m sorry that this is the only information that you have learned from this site….She is not backed by big Pharma and has one very small line of antioxidant supplements which she sells to aid in treatment of many different problems…..She is hoping to raise some revenue to support clinical trials
I agree with you that the system could be better, but believe that the medical staff are doing their best within the framework they have been given. I am in th UK. So this view is based on my experience in th UK.This is my simplistic view.
There is a lot of inertia in SOC. For decades cancer treatment was based on surgery, radiation therapy and a few pharmaceuticals. The medical decisions then were easy. If you could see it with the fairly insensitive methods they used, after positive biopsy, it would be removed or given radiotherapy. If the cancer was systemic then radiotherapy and/or pharmaceuticals would be used. But at this stage the treatment would most often be palliative.
Then in the last couple of decades there has been a proliferation of improvements to detecting cancer earlier and therapies for curing and prolonging survival. But all these new treatments require proving initially in-vitro and mouse model trials and then in the various phases of randomized controlled trials. Unfortunately the in-vitro and mouse model trials are not very good indicators of what will work in phase 3 trials and be adopted as SOC. The process is very lengthy and expensive. Also there is the inertia from the medical staff who may tend to base their judgements on their previous clinical experience rather than latest research and trials.
Since the development of the new treatments phase 3 trials have tended to be focused on extending the life of very advanced patients, when the exponential growth curve is steep and the cancer volume high. With a high cancer volume there is bound to be many different mutations, with some of them androgen independent. It is more difficult to extend life much.
Now that we have more sensitive ways of detecting cancer, It should be easier to extend life by treating when the exponential growth curve is fairly flat and the cancer volume small. However at the earlier stage it is more difficult to detect that the treatment is having a positive effect on survival. Also at this stage the medical establishment may well consider that expensive and potentially hazardous treatments cannot be justified, when the patient may not have any symptoms, even though this early treatment might extend life by many years.
At last, there are some clinical trials to treat high risk patients with low volume cancers.
I think that progress is being made on the many holistic approaches you mention but the process is very slow. Exercise and a healthy diet are generally accepted. Good progress is being made with respect to research on the gut biome and general health and I think this will have an impact on epigenetics and cancer treatment eventually.
With regard to supplements, there are many preclinical studies showing the benefit of supplements with regard to PCa but few clinical trials. I think their greatest potential is slowing growth when the cancer volume is very low. With a lack of cash incentive for pharmaceutical companies I cannot see change happening quickly. Maybe the breakthrough will come from countries that do not want to pay the the price for western drugs. Maybe a better way of predicting preclinical efficacy than mouse studies would make a difference.
Fifteen minutes per consultation? I wish! My encounters with my urologist and my oncologist have usually lasted 5 minutes or less, except for the initial gloom and doom presentation I got from my oncologist at the beginning of my treatment which lasted about 40 minutes. Sometimes I feel like I'm part of some sort of assembly line process, where speed and the number of patients seen per day is the goal. Keeping costs down also seems to be an important part of the process, which I can't argue with, but this may not be conducive to receiving the best treatment. I don't think this is just a prostate cancer issue, but is inherent in the medical system in the US.
Even at my appointment when I got the news that I had aggressive prostate cancer, I was probably with the urologist for only between 5 and 10 minutes. I posted this account of that meeting in another post:
" After the biopsy I was in the exam room waiting to hear the results, which I suspected would be bad. The urologist walks in, says "Hi.", sits down, and immediately says "Well, it's cancer, and it's the aggressive kind. You are at a fork in the road, you need to decide either to have your prostate surgically removed or start radiation treatments." I'm sitting there thinking "Wait, what?! Slow down, doc! You had me at "it's the aggressive kind!" Let me wrap my mind around this a while before I decide on what course to take." He must have seen my reaction because he then said that I had some time to decide what to do and that they would give me some literature to read, which was pretty much also shock and awe and not very comforting."
So then he handed me a 15 page prostate cancer tutorial, told me I would need to have a bone and pelvic scan, and to talk to his schedulers about how to do this and make another appointment on my way out, and that he would see me in about a month, then left the room. I talked to the schedulers and they said they would fax the hospital telling to schedule my scans, but the hospital never read the fax and I had to call the hospital myself to schedule them. The hospital told me I had to get a blood test to check liver function before the day of the scans, so I did, but it was unnecessary because they did the blood work the day of the scan visit at the hospital. And on and on!
As I see it we shall be soon having AI based medical care with complete insight of all symptoms with no constraint of 15 min and most upto date evaluations using all available options. Doctors will come only in performing certain specialized interventions. Even there most is automatic as in scan, pet scan etc ...
I feel that what I got from doctors
can easily be handled by AI consultations....90% of human doc will become irrelevant...and bye bye to refugee style waiting rooms...
I didn't criticize your deep dive....dive away, and good luck. I know that so far what you have chosen to do seems to be working for you.....adaptive theory/therapy I believe. Are there any trials?
This is exactly my experience. Not all of us live in the US and are being treated at Centers of Excellence in the top universities. I am quite surprised that what you described exists in France, an advanced high income country.There are millions of us in the world getting substandard treatments, latest methods and drugs are not available (not locally approved as they are too expensive). I am so grateful that our community provided 95% of my current knowledge about PC, just 5% I learned from my doctors.
We do not have to depend of advanced country know how. We the patients all over the world may contribute a lot in caring for ourselves. Thers is alot to learnfrom ancient way of looking at our health...fast, exercise, nutrition,meditation, sharing, and keeping ancient ancestral knowledge alive. Daya Goodenowe goes for patient and community power where big pharma and trapped dcotors are just one part of health. I follw random clinical trial and they take 10, 20 years....but I am not a fan of RCT and certainly not a gold standard for developping therapies. Equally and if not more important is adpatative therapy where CT or RCT involves N=1 an Nal says. Who knows more about my body than myself if I listen to it. We have to simply avoid fake wishful SOC. That is what we do in thiis forum....Each of us is part of RCT , free from Big Pharma.....
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