Hi, folks. I haven't been on this site for quite awhile, as I was (justly or not) put off by so much negative reaction to the concept that there is, science based truth that there is indeed a mind/heart (emotion)/body connection. And that we are not powerless or have no control over our diagnosis other than what blood counts say or what Pharma treatment our oncologists dictate.
We are NOT our diagnosis, we are individuals whose illnesses are individual and react differently.
I refuse to be categorized. I have yet to meet an oncologist who even asks how I feel, what I have been doing to maximize my immune system. Most current allopathic medicine seems more concerned with killing the cancer, at whatever damage to our body systems, rather than focusing on healing the body to fight the cancer. Well, that's pretty much how they were trained.
I would use a Naturopathic oncologist if I could find one in my area, but there are none. So I have to rely upon my research and common sense.
So far I've been very fortunate that, as far as we know, the cancer is still stage one after about 5 years and appears to be remaining in below diaphragm lymph nodes. In the last 3 years none of the doctors has suggested more CT scans, saying the size of the nodes fluctuates.
Anybody out there have any similar experiences or feelings? If you hate what I say and think Pharma treatments is the only way to go, I don't want to hear from you. There is enough negative narrative.
Thanks for listening.
Written by
ybird
To view profiles and participate in discussions please or .
I'm with you on this one. I'm not quite 80 yet, but still fighting fit and living an unmedicalised life 18 years since diagnosis with CLL.
Let me add to what you have already said.......
Medical science, like everybody else, doesn't know what it doesn't know. It has established its theories and practice on the foundation of the premise that only matter exists, and therefore it works within its chosen limited field. It does acknowledge some annoying phenomena like the placebo and nocebo effect, but wouldn't go as far as accepting the premise of mind/body medicine. Interestingly there are many doctors who do, but they are considered to be on the fringe of the mainstream. I have read some interesting papers written by such doctors.
The main problem with mind/body medicine is that it doesn't have a clinical application except perhaps for a few patients who are open to the idea because their life experience has already shown them the connection between mind/emotions/body. Mainstream medicine deals with pathologies and the pharmacological solutions to them.
There is no right or wrong here - simply choices in accord with our best judgement. I think the CLL researchers have done a fine job, and the treatments available have helped huge numbers of people. But if one can avoid treatment, then all the better. I have endeavoured to live a balanced life in mind, body and spirit. Is this why I've never needed treatment? I have no idea. But just as doctors know all sorts of things that I don't know, similarly there's a bunch of stuff I know and can do that doctors can't do. There are many different rivers of knowledge and experience.
So as I said, I'm with you, and wish you the best outcome.
I have read a lot about this and I believe that our minds and bodies work as one unit. Mind over Medicine by Dr Lissa Rankin is a book I can recommend.
We are all on are own journeys and have free will and free choice. If your journey is working for you then great! With my journey science and traditional cancer treatment has been a life saver and given me a better quality of life and hope. Stay well! 🦋
Note: Sometimes I take a break from the site when I need to center myself and stay in the present. I no longer read all the posts but choose the ones I want to read. Again, stay well!🥰
I think we need to do what works best for each of us. CLL/SLL doesn’t define me, but it has given me a few bumps in the road on my life’s journey. I’ve had traditional medicine that keeps me going strong along with an healthy lifestyle. I’m fortunate to have a loving family, great friends, pets, hobbies, etc. I believe my diagnosis has made me appreciate everything in my life. Yes, my specialist asks how I’m feeling and what’s new in my life? May your journey continue to be successful. Kindness always, Sally
Your summary is much like my experience. I have good treatment teams, including the hematologist who asks about how I'm feeling and what's happening in my life, how I'm tolerating the treatment. I believe it is important to appreciate that most of us are here and able to discuss emotions and feelings thanks to the advances in treatment provided by medical science. The laboratory scientists who work to identify targets for effective treatments, the physicians who work with NIH (in the U.S and elsewhere) and Pharma to conduct the clinical trials that lead to approval of new treatments, and the medical people -yes, they are people like us in the final analysis, not gods, who supervise our treatment. Sometimes it is helpful to take a step back and realize that many of us would not be here if not for the tremendous progress in CLL therapy. And to realize that no one does it all: the docs are not social workers, they are not therapists, they are not basic scientist laboratory investigators. But most have compassion, are willing to listen, and to make referrals when asked or needed. They practice medicine - they become better with time, experience, and practice. And our health care system could certainly improve as could many areas of service in the digital age. But if one advocates for oneself and takes responsibility for one's health in our medical system and with other providers when needed such as therapists, alternative medicine providers, nutritionists, friends, family, and others, then you are doing the best you can, as more eloquently stated in the Serenity Prayer.
I think we should keep an open mind. On one hand, I feel myself that I'm hoping for some sort of cure through my behaviour or lifestyle, staying clear of medical intervention altogether. I admit that seems unlikely and possibly unwise to hope for. But on the other hand Type 2 diabetes turned out (for some people at least) to be reversible, when the medical profession said for a long time it was not.
Not to shame ybird, yet, consider the relative and perspective aspect of the term "negative" with regard to those who have an incurable chronic disease such as CLL.
As we grow in our CLL journey, we may may find a blessing in the compassion of understanding that some may not have resources, knowledge, or a support system that provides them substantiated hope. Everyone is an individual with individual backgrounds, needs, coexisting illness, and mental and physical limitations just to name a few. Some are completely alone, financially destitute and subject to other challenging environments.
As we know, there can be an abundance of shame, fear, and desperation that comes with having a disease that replaces healthy logical reasoning with overwhelming uncertainty, and as a result we often say and do things that appear off base.
Your input is valued as much as anyone, and I encourage you to share your best learning as well as offering an occasional rant or respectfully arguing a perspective.
Guaranteed that I have been up, down and sideways in my responses and posts. Please be comforted that if one of us gets unacceptably negative or to far off the chart, an admin will appropriate. Trust me, I have had to be spanked more than once.
No one is perfect and we need to encourage each other to share in spite of our imperfection so that we can grow together. Although it is wise to be well thought, one should not refrain from participating, because they may say something that is not absolute. Audience perspective differential is to great.
And by the way, I appreciate the negative aspect of your rebuking negativity. You are right! We can all be more forward thinking.
As Andrew Schorr says - "Knowledge can be the best Medicine".
DR. Brian Koffman - "We are all in this Together".
I think we can agree that the health of body and mind are closely intertwined, and medical science still has a lot to discover. Recent research into the microbiota-gut-brain axis reveals, for example, that chronic stress is associated with GI disorders and infections physoc.onlinelibrary.wiley.... while two-way communication across the m-b-t axis can affect the development (or not) of diseases such as Alzheimer's and Parkinson's nature.com/articles/s41392-...
So anything you can do to maintain a healthy body and mind should help you live better, for longer.
Beyond that, what can "Naturopathic Oncology" do about CLL? I approach this question with an open mind and limited experience. After my diagnosis I regularly saw a German "Heilpraktiker" (a naturopath with professed insights into cancer biology) and for several years I took curcumin and other natural medications. My time to (conventional) treatment was 13.8 years, and with hindsight it's apparent that taking the natural remedies delayed the inevitable by a few months at most. In other respects I had continued to live a normal low-stress lifestyle, eating and exercising well.
"Naturopathic oncology utilizes natural therapeutics, including both modern and traditional methods of treatment. Through diet and nutrition, exercise, vitamin and mineral supplementation, botanical medicine, homeopathic remedies and more, naturopathic medicine can support the body's own healing abilities and strives to empower individuals to make lifestyle changes necessary for optimal health.
You can improve your chances of survival and create a healthy anti-cancer environment inside your body after or during conventional treatments by truly beginning to understand the way in which the tumor initially developed. Surgery, chemotherapy and radiation are aimed at getting rid of the tumor, and they may be the best way to do so. However, they are not aimed at the reason that the tumor developed in the first place. This is the area where Naturopathic Oncology shines.
Cancer patients hoping to improve their survival rates, ease their symptoms, and improve their quality of life can do so under the supervision of their naturopathic doctor, working closely with their medical treatment team. This integrated approach gives cancer patients the best chance at a healthy future.
Naturopathic doctors believe that there is an underlying cause to the cancer environment in the body that allowed a tumor to develop. Your doctor will explore these causes with you, which may include; immune system problem, toxicity of chemicals in the system, lack of certain nutrients, and stresses on the body, whether psychological or physical".
To me it's reassuring to see that this source presents Naturopathic Oncology as complementary to conventional medicine rather than as an alternative to it.
I've highlighted the sentences above in bold because in CLL, as far as is known, the disease originates as a mutation in a single cell. The particular mutation confers a survival advantage on the cell of origin, helping its clones to multiply, gradually or exponentially, over time. But because CLL generally progresses very slowly, identifying the cause of an individual's CLL is impossible in the great majority of cases. It's hard to see how any naturopathic intervention could retrospectively influence the "underlying cause" of the original mutation, whatever that was and whenever it occurred.
All cells in our body divide, and auto-correction notwithstanding, mutations in our DNA are extremely common (many billions per day). The mutations that don't lead to cell destruction may persist, so that by the time we get to middle age every one of the 30-something trillion cells in our body has accumulated a couple of hundred thousand mutations. The vast majority are harmless, a few may induce cancer. So your CLL diagnosis may be the result of a DNA copy error that happened by chance, several decades ago, while up to 10 percent of people with CLL simply inherited a mutated gene from their parents. I've calculated that my own CLL cell-of-origin mutation likely occurred between conception and infancy. In CLL patients with an aggressive form of the disease, the original mutation probably occurred relatively recently with potential for secondary mutations due to genomic instability.
Further to what bennevisplace wrote, if you opt for the naturopath oncologist route, the smart money is on using their services in a complementary treatment manner and even then, choose your naturopath wisely
I am with you on this. Like you I couldn't find an oncology naturopath in my area but one just moved here! Maybe that will happen for you. Also, what about telehealth? Some offer that and you do at home tests to send in or go into a lab. I have had to piece together some things. The Cancer center offers meditation sessions for all cancer types, the Integrative Medicine center lifestyle R.N. helped with dietary changes and now I go to the Oncology Naturopath. What type of research do you do and have you found any sources that are helpful?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
1st week on venetoclax - WOW, not what we expected...
What happens to the body if you are MRD negative and keep taking imbruvica?
here we are again 
FIRST WEEK ON ZANUBRUTINIB (BRUKINSA)
