Regina Saphier: Advising Cancer Patients (the European Perspective of a Patient Advocate and Adviser)

Regina Saphier: Advising Cancer Patients (the European Perspective of a Patient Advocate and Adviser)

Yes, I know, when you look at my LinkedIn profile, there are so many things on it, and yet you would not think that this is also something that I do. But I do it. I have done it for over a decade, and not because it is fun to read about cancer, but because I like to help people stay alive and I am able to ask good questions and am OK with reading complicated research papers (sometimes the summary, the intro or the conclusion are perfectly enough, but other times I have to read for hours to really understand a method and/or procedures). I like to explain things as well, and I prefer to write because a written explanation is always there for people to consult. Disclaimer: I am not a medical doctor, I am not a clinical researcher, I am not a diagnostician, and I can’t cure you of any illness. I am just a human being who does not see a key service that people need… so, I do it for them… a guide who helps desperate people understand what their doctors are saying and find out what doctors are not saying. I help people fight for their lives more efficiently when I am able to.

 

Infantilization of patients in the era of readily available high level online knowledge

The really good ones were all female!

First, let me talk about the good doctors I encountered. Fortunately, I encountered a few bright, open minded, emotionally intelligent, introspective and cooperative doctors. I even had a female doctor congratulate me when I told her how I diagnosed an illness that was unusual and it was later confirmed by lab results (I had to behave like a detective, pick people’s brains, read online, and I had to push for tests… it was’t easy). I also had a doctor in Europe who asked me for full articles that I downloaded from Harvard University’s server. I had a particularly brilliant doctor at Columbia University. She was fun, smart, and was always willing to explain everything to me. I had a doctor (also in Europe) who was even happy to explain the technology she used. She told me that I was the first patient ever who asked her to do that. All of them were female doctors! The really good ones were all female. (It is interesting, because I have no female friends. All of my friends are male and highly intelligent. So, it is surprising that when it comes to doctors, I prefer women. Note: I once read that female doctors are simply better. It is probably because of better social skills and listening skills. I am not saying that male doctors can not be good. All I am saying is that I have never seen them. Sitting in your office and administering medication and ordering lab tests is not what I consider the job of a good doctor. It is so much more complicated.)

There were doctors who were professionally famous but as human beings those were often the worst (I would naturally be kinder to a horse or a dog than those people were to me… those were mostly male doctors). In the age of medical AI it is your humanity that will be important, not your medical data driven memory… even your medical experience driven diagnostic skills will be less of a priority after a while. If you want to remain a doctor and become a really wonderful one, develop your emotional and social skills, focus on your communication skills, be comfortable with technology (like AI), plus learn to embrace and utilize the fact that more and more people are acquiring knowledge online. If you dislike their sources, direct them to the right sources. Be their guide in the medical jungle that you know better. Listen to their personal patient narrative, that they know better.

I posted this in 2016 as a status update on facebook:

Here is what I think:
This is the age of The Idiocracy in the age of unlimited and available knowledge…
And the age of The Out of Touch Intellectual and Political Elite in the age of unlimited connectivity…

My opinion hasn’t changed a bit!

How it “works” now

Most people just accept what their doctors are telling them. I am not that kind of person and most doctors hate that. I am looking forward to the day when I am going to have my own medical AI to prevent, treat or even cure illness (without having to see a human doctor). Unfortunately, most doctors today adopt a mindset that is based on viewing patients as “the other” (this is an international phenomenon and it is not new… in fact this horrible attitude is hundreds of years old). So, to me the expression: “patient” describes a submissive, child like “know nothing”. This to me is military grade bullshit. An archaic hierarchy based mindset created the idea of the “patient”. The doctor is “the know it all” character of this type of medical story. So wrong! And it is not even true! Most medical doctors are not scientists and are often terribly misinformed, yet super arrogant!

I would like to live in an era when all people are well educated and highly able to interact with medical technology. I just witnessed how a cancer patient had to wait months to get properly diagnosed and she is still not getting her treatment. Why? Because her oncologist is not willing to cooperate (not open to questions) and now even went on holiday, and because the patient behaves like a child… let me be more specific: she is forced to behave like a child by her passive-aggressive medical practitioner (plus, she is hardly able to understand the most basic explanations, because she was never educated in this area… and she did not educate herself in this area… so, a lot of time goes by without actual diagnostic and treatment related progress).

How it should work (in my opinion)

If the process would be automated I could have helped her faster without human doctors. Press two if you already had cancer… Here is how it should work in my not so humble opinion:

Press three if you are inoperable… Press this or that if you are not willing to receive chemo… Please, proceed to this and this specialist for a surgery free biopsy… Please, watch this video to understand the risks associated with biopsies… Please, go to this menu if you would like to speak to someone regarding your personal risk based on your medical history… Please, make an appointment in this menu for an MRI and a PET/CT. Please, request a lab test, including genetic testing. And a few days later: This is the type of cancer you have. These are the types of treatment combinations you can receive in your country, within the EU, in the US, in Asia, or anywhere in the world. These are the commercially available options. These are the clinical studies you could be eligible for. Here is where you can start registering for treatments. Here you can read full medical articles on PubMed. Here you can find patient readable summaries of the articles on the medical wikipedia. This is how much the different treatments cost. This is the most cost effective treatment for you. Here is your big data and AI based outcome analysis for all the treatment combinations. This is where you can receive financial support. This is the surface where you can raise funds online for your treatment. Thank you for selecting this noninvasive surgery in Italy and this cancer vaccine in Germany. Please, watch this video regarding the risks involved and here is the explanation how this is a safer method compared to another. Here are the clinic’s safety statistics locally, regionally and globally. Please, select the doctor you would like to see at our clinic. Here is your doctor’s performance rating. Here you can order your EU insurance card. Here you can contact your doctor via skype. Here you can book a medical flight and a medical stay in a nearby hotel or in our own hospital based hotel room. Here you can interact with patients like you.

Yes, I want this all to be online, and globally integrated. I want this to be a smooth service, like any other good service. I want as much stress be removed from the process as possible.

More about how it works now:

Doctors often behave like badly trained policemen. It is a bit like racism! I am telling you, it sometimes feels like I am talking to a white supremacists male police man while being a black female driver on a deserted country road, or something like that. I am white, but I can imagine the generalized anxiety and trauma such people cause innocent and vulnerable citizens. This best describes the atmosphere many doctors create while “serving” you. It often feels painful when I am interacting with a doctor. It is physically painful and it gets my sympathetic nervous system going… and that is directly damaging to a patient’s health, medical outcome and trust. So, doctors with this mindset should know that their behavior directly generates distance, stress, pain and a hostile environment that often results in more illness, instead of a cure in the first place. Many years ago I read the confessions of a doctor who only realized how she was hurting her own patients when she herself ended up being a patient. She could not believe the dehumanizing, insensitive, disrespectful and ignorant behaviors of her colleagues while she was a patient.

How can there be any trust when your doctor is not respecting you, does not see you, does not appreciate you as a complex and evolved human being or is even afraid of you because you are well read and are asking valid questions? Of course trust cannot be built this way! These people treat me as if I am reading homeopathy related articles (I think homeopathy is bullshit), when really, I am reading PubMed and similar advanced medical sites, that are there for medical doctors, smart nurses, diligent patient advisers and intelligent patients to educate themselves. And yet, I am treated like an idiot, with all the prejudice a human doctor can accumulate about a patient with higher education, fluent English, international experience, and the ability to understand the scientific literature that doctors are also supposed to read (but often don’t even have access to those databases or don’t have the language skills to understand the articles… it is everyday reality in Hungary for example, that doctors have no access to the latest medical literature and/or can’t read in English… many hospitals don’t have enough nurses, doctors, medications, appropriate technology and no toilet paper and no soap… even the furniture is falling apart… the rooms were not painted for decades… imagine that… and Hungary is part of the EU…).

Yes, indeed, I feel the abyss between the everyday realities of our dystopian present and my perfectly implementable utopian future.

 

Excuse My French!

So, in my experience, doctors switch to cognitive empathy instead of affective empathy and some even enter the realm of transient psychopathy coupled with professional denial. This behavior is next rationalized (by medical professionals as a group) as normal behavior, and vulnerable patients are often (excuse my French) fucked by this atmosphere, because even the nurses help maintain this by saying things like: “Yes, we know that he is insensitive and has no people skills, but this is why we are here… to compensate for his lack of sensitivity and empathy…” and she goes on being insensitive herself… In this insensitivity bubble (surrounded by desensitized medical professionals) patients suffer in silence. (Patients sometimes even display symptoms of a sort of “medical Stockholm syndrome”… identifying with those people who basically torture them in a horrible medical system, saying things like: “I know how difficult it is to work in such an underpaid, stressful environment”… when really, all you see, is that a particular doctor was never trained to be polite, kind, able to listen and empathize…) All the traumas patients accumulate during years of medical (mis)treatments can and will result in PTSD (post traumatic stress disorder). Generalized anxiety and stress related disorders undermine a patient’s chances of survival. When (due to past experiences) someone’s cortisol level jumps high just by thinking about having to go to a hospital, that will decrease that person’s life expectancy. And if you look for the most lethal conditions in humans, cortisol imbalance and chronically high cortisol levels are one of the most lethal conditions.

I am describing the atmosphere that leads to mistreatment, cruelty and humiliation. I used to trust doctors when I was younger and naive. But when I got seriously ill in my thirties and I encountered the above attitudes and doctors’ inability to help me and unwillingness to cooperate with me (there was even this obvious disapproval… and get this: even scolding for my informed questions), I discovered that most doctors simply cannot be trusted and often, you are on your own when you are ill. Literally, on your own, because your family (most likely) has no idea how to read scientific literature and don’t have your curiosity, stubbornness and grit to learn about medicine (if you have those features, you might not be 100% lucky in your ignorant human network… smart kids are bullied in schools and smart patients are bullied by doctors).

Patients also like to treat doctors as the “other”. “The doctor knows.” “The patient does not know.” This is a nineteenth century or even older attitude and “agreement”. Totally outdated! This is why I started to read the medical literature that doctors are supposed to be reading, as well as many patient blogs that knowledgeable patients write about their experiences. Unfortunately, I have not yet found the enlightened doctors to work with in my own personal environment. At the same time I reject unenlightened doctors. I have seen how “health care” and “healing” resulted in completely ruined bodies and souls. When a patient looks and feels like he or she was tortured by someone at the end of a treatment, plus his or her family was ruined by the experience… is that medicine or barbarism? This situation of rightfully rejecting medical barbarism could even kill a patient, no matter how informed he or she is, because such patients are disgusted by doctors who dehumanize and disrespect them. I am not a patient! Rather “impatient”! If I have to respect you as a doctor for your knowledge and time, should you not respect me, my knowledge, my time and my life? Look at me! I am a human being just like you!

What is special about my position as a patient adviser and advocate is this: Most oncologists are specialists. They are following a protocol and only read about their specialty locally (if they read at all…). But when you are a volunteer patient advocate and adviser (plus sometimes a patient yourself) with a global mindset, you read about many different illnesses and all sorts of treatments, even experimental ones, and even about treatments that are not yet mainstream and cost an exorbitant amount of money. “Multipotentialites” (everyday “polymaths”), like me, we read about everything under the Sun. Most doctors hate that and we will be bullied by doctors. This is absolutely wrong!

 

A bit about volunteer patient advocates and advisers

Patient advisers and advocates are often volunteer “medical sherpas”. They don’t really want to go where you go, they don’t have your problem, but out of love and with lots of empathy they pick up parts of your problem and carry parts of the burden for you, so you don’t have to. Such people will explore new paths of hope for you while you are asleep. Will explain medical procedures when you don’t understand, and remind you of the right questions you should ask your doctors. We do the heavy intellectual lifting to lighten the load of the struggle for patients and for doctors as well. We listen, do research, we network and search for answers, and explain. We translate the jargon. If you like, we repeat things ten times until you understand. We encourage you to be assertive. We tell you to expect more. We also tell you about the limitations and we don’t pretend that life is endless. We hear you and acknowledge your limitations. We know that every patient has a different endgame as well. Some want to try every possible treatment, no matter where it is. Some don’t want to be treated abroad. Some want to have a few good last years. We want you to make an informed decision for yourself. We never force you to do anything. It is your life.

 

A new type of medical training

It would be interesting to train doctors in a new way… Have them train like debate teams. When learning to debate, people learn to argue in support and against something. The same way, doctors should be trained to argue their positions from both a medically trained doctor’s perspective and from a well read patient’s perspective, and even from a completely uneducated patient’s perspective. This would help even those doctors with impaired empathy to improve their communication skills and would gain insight into patients’ anxieties. Even if you are a surgeon with psychopathic traits and zero affective empathy, you can learn to believably pretend to empathize and so put your patient at ease. An anxious patient with high blood pressure in surgery is at risk. If you can get your patient to trust you and relax, the surgery will be safer.

 

Artificial Medical Intelligence and the future of self-guided health care

I am one of those who believe that AI will be our highly personalized health care provider. Those adults who are well educated will be most able to access superior medical services to prevent illnesses by using medical AI first (and the eight year old girl who grows up while interacting with AI fluently… You know the scenario when a kid is constantly scolded: “Why are you always playing with your AI…?” and then one day: “Oh, did you just save your grandmother’s life with your AI???” But, of course, I am not talking about basic Artificial Narrow Intelligence. I am talking about either medically specialized Narrow Intelligence or later Artificial General Intelligence used in medicine and much later Artificial Superintelligence… it will feel like god to many people…)

 

Prevention will be the primary goal. Medical AI will be the first line of support and most human medical appointments will be done online. Most surgeries will become noninvasive. In fact the day will come when people will not believe invasive surgery by humans was a thing. I even suspect that hospitals will one day be completely obsolete. So, one day, hopefully, my medical learning capacity, my openness to technology and my AI interactive skills will be helpful when trying to figure out a treatment for myself and others and I would not have to go to a doctor’s office at all. I could just consult with several pre-selected doctors globally. Send me the medicine in the mail or let me print it. There should be more medical education in high schools (and online) and all people should learn how to make sense of clinical research papers (until this part can be completely taken over by medical AIs). People should not be so dependent on doctors and their very limited skills, questionable humanity and finite time. Your health is too precious to search for the right doctors for years! You should not have to go bankrupt during a treatment. Your family members should not get sick of the stress your prolonged care causes. Adults shouldn’t have to behave like helpless little kids while being treated within a questionable healthcare system.

 

Advocacy and advising people in practice (a mini case study)

I advise people voluntarily for free (and I avoid confrontation with doctors left over from the nineteenth century… not even the twentieth!). I do not advertise this activity. I help people with information. I support their decisions by summarizing the discovered possibilities beyond the local medical protocol. For example when a family friend had cancer I decided to search for a clinical trial for him (he did not want to be treated abroad) and when I found the right one, I gave his wife a phone number to call and explained the process. He had metastatic lung cancer 10 years ago (with bone metastasis). Luckily, he was a genetic match for the study I suggested (after picking other people’s brains for days). He lived an additional 5-6 years because the new treatment worked for him (in Budapest!). Today, an additional 5 years of survival could mean a possible cure that is under investigation now… but perhaps becomes a fully available, genetically targeted cure in 4 years for example.

 

Combination therapies (based on genetic testing and imaging)

It is important to note that today, cancer treatment does not mean one standard for all. Treatments are combined for individual needs. You can have:

  • Herceptin if your breast cancer is Her2+ (Human epidermal growth factor receptor 2 positive breast cancer patients are a minority among breast cancer patients, but have a very good and specialized treatment option… however, live with an aggressive type of cancer that is likely to return, precisely due to the growth factor receptor, that is also the target of the special treatment),
  • Arimidex if your cancer is hormone sensitive,
  • Proton radiation therapy if the cancer is in an area that does not move during treatment (proton radiation can be better targeted and causes less damage),
  • MRI guided Ultrasound Surgery if you do not want a surgeon to cut you open, and a
  • Cancer vaccine to help your own immune system fight the cancer.

You can have all of these combined. Cancer is tricky. Today we are still in the “kill” paradigm, but one day the “return the cancer cell to a normal cell” paradigm will most likely rule.

This list is actually a fresh one I compiled for a patient with recurrent breast cancer that metastasized into her adrenals 5-6 years after her first diagnosis and treatment. Her prognosis was really bad, but she is still alive after 5 years! For her type of breast cancer it is extremely unusual to have adrenal metastasis and due to her general condition, she is inoperable. Now, even the biopsy was tricky. In the treating hospital (the leading one in the country) her doctors were unable to even imagine the biopsy without invasive surgery. She had to go to another hospital to see a specialist for ultrasound guided biopsy (no invasive surgery was needed for the adrenal biopsy!!!). Her oncologist only suggested chemo (I informed the patient, that chemo might spread her cancer without surgery… also, a biopsy could spread cancer cells), Herceptin (in my opinion, it should have been started within a month after her metastasis was diagnose, yet months later she is still not being treated) and Arimidex (also helpful). Her oncologist did not say anything about commercially available proton radiation therapy, MRI guided ultrasound surgery and personalized cancer vaccines in the European Union. I told her about these.

When necessary, I also look for top surgeons internationally (e.g.: for colon cancer), and possible treatments for adrenal cancer, like the personalized cancer vaccine (for the patient with adrenal cancer). When I do this research, I regularly pick other people’s brains internationally and read many articles to help patients and their families. But I never tell people what to opt for. I only research, list the options and explain them (and their possible combinations). The decision making is the patient’s personal task.

I think there should exist independent advisory teams for each patient in highly demanding situations. If you have never been ill, if you never had a relative who was ill, if you are a doctor who never experienced illness as a patient or family member, you have no idea from a patient’s perspective and from a relative’s perspective how terribly demanding it is to be ill, find your way in the maze of medical institutions, understand lab results, question your doctor’s opinions and suggestions, read, learn, be a caretaker, take care of yourself, work, be a mother, a father, and look for better treatment options (often internationally). People are fighting for their lives in a dehumanizing and confusing system! And you are lucky if you have the funds to finance the shocking expenses.

Advising cancer patients is a side project I do because I am able to. So, why not? Right? I wanted to write a summary blog about several of the possible treatments that people usually don’t get information about from their run-of-the-mill oncologists (below I am going to add a long section about treatments and medical technologies). Getting the best information really should not be a matter of chance in the age of the internet, AI, big data, citizen science and epic, interactive, multiplayer online games! There is so much information out there that could be useful to many people. I even have a concept of a medical science game for this purpose, for citizen scientists and even professional scientists. Saving a real human’s life in an online game would be much more epic than killing an avatar in an online game! In fact I am already working on this game idea!

OK, now that I managed to vent, I am going to talk a bit about the cancer treatments I encountered or revisited during the last couple of months (and this is just a short list, because I read at least a dozen articles regarding cancer treatments by the time I get up every day):

 

Personalized cancer vaccines (Example #1)

Cologne, Germany, European Union
Immunologisch Onkologisches Zentrum Köln (IOZK)
http://www.iozk.de/download/iozk_patient_info_2017.pdf

VOL-DC (Viral Oncolysate Loaded Dendritic Cells) or NDV/DC Immunotherapy (Newcastle Disease Virus/Dendritic Cell Immunothrapy)

You should have seen the different ways in which I attempted to explain the brilliance behind this safe treatment. I went from the scientific summary to the theater method: I portrayed the beautiful dendritic cells as ballerinas in tutus going swimming in the tumor specific antigen swimming pool in the lab (made possible by viruses), and later showing off the antigens like glitter to the T cells in the body. In turn the T cells are hopefully able to kill the cancer cells, because the cancer cells can no longer hide. I can see this in my head as an animation. I seriously tested every possible explanation level to get the message to the patient who is a female close to 70.

I heard about this method on the radio and did a few days of research. First, it sounded too good to be true. You just waltz into an office in Cologne, get tested and if your immune system is in good shape and if you have tens of thousands of euro in your bank account, you can get this extremely safe cancer treatment that might extend your life by years… and in a few cases even clinically cure some people. If you are lucky, this way, your own immune system will be able to kill the cancer. No toxic materials are used.

The patient, because she is inoperable, decided to go see if this would work for her. During the travel preparations she had an accident. She fell and hurt herself badly (in front of a building where she had to go in person to get her EU insurance card!!!). She still got the airplane tickets and was in Cologne within a few days with her husband. She wants to live!

I really don’t understand why this clinic does not send healthy, fit, medically trained employees to travel to such patients internationally. I mean, people in their late sixties should not have to travel up and down internationally to find the right treatment! Again, making everything convenient for the doctors, and stressful and dangerous for the patients. The patient should rest and his or her stress level should be kept minimal, yet it is the patient who has to go everywhere and wait hours and days for some attention (while risking accidents and infections). And in this case we are talking about a private European clinic in Germany!

Anyway, the results showed that she could benefit from the treatment. However, the clinic made a huge mistake! They promised to send the results in two weeks via e-mail. Instead, for some absolutely unclear reason, there was promise after promise for 5 weeks! Imagine how a patient (who is basically terminally ill without the appropriate treatments) feels while this is happening. The trust is gone! You run to Cologne, spent thousands of euro on airplane tickets, hotel nights, blood tests, and you are made to wait over twice the promised time period and that without any explanation and without any apology from your doctor! I mean, this was clear service error. This is unacceptable! The least those people should do is refund the money. Who would want to be treated by a clinic that behaves in such irresponsible and disrespectful manner? All I can say: Shame on IOZK! If you were the ones able to save this patient, if you wanted to save this patient, how could you treat her like this? Don’t you understand that you are in the business of trust, communication and saving human lives? It is very possible that this patient will live a shorter life because she can no longer trust you and can’t accept your treatment. She now thinks you are selling a hoax and I can’t blame her (even though I know that your method is medically valid). I personally think that the lab results were valid, useful and the treatment could work. But I can no longer expect this patient to trust IOZK. Obviously! And why do I have to write angry letters to a private clinic in Germany to get the lab results that cost the patient 3000 euro 5 weeks earlier? As if we have unlimited energy… (What are these people thinking?)

I could see from the results that the patient’s adrenal cancer was HER2+, so Herceptin will be an option again. But because she could not trust the results sent by IOZK, she had a biopsy that was/is not without risks. The biopsy reinforced the blood test based results. But with all the enormous effort by her, by her husband and by me, how is it possible that it took so long to get her these results? She was diagnosed during the spring and it is now August and she still did not get any treatment. What kind of medical system is this??? What are her doctors doing??? And now, because it is the summer, her oncologist just went on holiday! Yes, now that she knows what treatment she needs, she still has to wait! This is abnormal and unethical!!!

 

Personalized cancer vaccines (Example #2)

Suddenly, another personalized cancer vaccine turned up on my radar in Düsseldorf, Germany. I did not yet explore this one further, but I put it here for people who are interested:

NEXTGEN ONCOLOGY GROUP
Univ.-Prof. Dr. med. Hans Bojar
Düsseldorf, Germany
http://www.prof-bojar.de
This is from the website:
“The NextGen Oncology Group concerns itself with the further development of precision oncology treatment. Since tumors are as individual as a fingerprint, cancer treatment can only be successful if it takes this individuality into account. Using highly innovative procedures, we determine a patient’s molecular fingerprint. Pan-genomic gene activity analysis, next-generation mutation analysis, and many other procedures are the technologies necessary to personalize treatment.

The standard cytotoxic chemotherapy has long since been overtaken by the intelligent, personalized targeted therapies that are now at the heart of scientific inquiry.

Modern, molecular-genetic technologies are the basis that allow identifying individual treatment targets. The recent development in cancer vaccines has also raised high expectations and hopes. By analyzing the entire human genome, a tumor’s individual mutations can be determined. This then allows creating absolutely personal vaccinations which are as individual as a fingerprint. These new therapeutic options will significantly change the treatment of tumor diseases in the years to come.”

 

Another type of immunotherapy: Chimeric Antigen Receptor (CAR) T-Cell Therapy

In this case new receptors are added to patients’ own harvested and later re-injected T cells. Very promising method, but can be more dangerous than the personalized cancer vaccines.
https://en.wikipedia.org/wiki/Chimeric_antigen_receptor
From the wiki article:
“Chimeric antigen receptors (CARs), (also known as Chimeric immunoreceptors, Chimeric T cell receptors, Artificial T cell receptors) are engineered receptors, which graft an arbitrary specificity onto an immune effector cell (T cell). Typically, these receptors are used to graft the specificity of a monoclonal antibody onto a T cell, with transfer of their coding sequence facilitated by retroviral vectors. The receptors are called chimeric because they are composed of parts from different sources.

CARs are under investigation as a therapy for cancer, using a technique called adoptive cell transfer. T cells are removed from a patient and modified so that they express receptors specific to the patient’s particular cancer. The T cells, which can then recognize and kill the cancer cells, are reintroduced into the patient. Modification of T-cells sourced from donors other than the patient are also under investigation.”

 

News regarding metastasis prevention:

This is also interesting and relevant:
Johns Hopkins researchers say they’ve unlocked key to cancer metastasis and how to slow it
http://www.baltimoresun.com/health/bs-hs-cancer-trigger-20170625-story.html
From the article:
“When the tumor reaches a certain density, the study found, it releases two proteins called Interleukin 6 and Interleukin 8, signaling to cancer cells that things had grown too crowded and it was time to break off and head into other parts of the body.”

“The team then tested two drugs known to work on the Interleukin receptors to see if they would block or slow metastasis in mice. They found that using the two drugs together would block the signals from the Interleukin proteins that told the cancer cells to break off and spread, slowing — though not completely stopping — metastasis.

“The drugs the team used were Tocilizumab, a rheumatoid arthritis treatment, and Reparixin, which is being evaluated for cancer treatment.

The drugs bind to the Interleukin receptors and block their signals, slowing metastasis.

Though metastasis was not completely stopped, Jayatilaka said, the mice given the drug cocktail fared well and survived through the experiment. She said adding another, yet-to-be-determined drug or tweaking the dose might stop metastasis entirely.”

 

Do the most extensive genetic testing possible!

Keep this in mind when your outdated oncologist tells you that no extensive genetic testing is necessary:
Clinical impact of extensive molecular profiling in advanced cancer patients
https://www.ncbi.nlm.nih.gov/pubmed/28179005
From the article:
“Extensive molecular profiling using high-throughput techniques allows for the identification of actionable mutations in the majority of cases and is associated with substantial clinical benefit in up to one in four patients.”

 

Highly targeted cancer treatments are here for very specific mutations!

A New Cancer Drug Helped Almost Everyone Who Took It
https://www.forbes.com/sites/matthewherper/2017/06/03/a-new-cancer-drug-helped-almost-everyone-who-took-it-almost-heres-what-it-teaches-us/#37add5106b25
From the article:
“… the DNA of his tumor was sequenced, and he was entered into a clinical trial for an experimental drug called larotrectinib. He felt better within a day. Within 72 hours, he no longer needed a cane. Within two weeks, he was walking around Manhattan on his monthly clinical trial visits, playing with his kids and eating like a champ.
Laurie’s experience isn’t unique. Results in the first 50 patients treated with larotrectinib are being presented today at the annual meeting of the American Society of Clinical Oncology, the biggest gathering of cancer doctors.”
“Loxo Oncology was founded in 2013, the brainchild of an oncologist named Joshua Bilenker, who was then working as an investor at Aisling Capital, a private equity firm. Between 2004 and 2006, Bilenker had served as a reviewer in the oncology division of the Food and Drug Administration, working on applications for new uses of cancer drugs like Rituxan and Herceptin.”

 

FDA Clears First Cancer Drug Based on Genetics of Disease, Not Tumor Location
https://www.scientificamerican.com/article/fda-clears-first-cancer-drug-based-on-genetics-of-disease-not-tumor-location
From the article:
“Merck & Co’s immunotherapy Keytruda [pembrolizumab] chalked up another approval on Tuesday as the U.S. Food and Drug Administration said the cancer medicine can be used to treat children and adults who carry a specific genetic feature regardless of where the disease originated.
It is the first time the agency has approved a cancer treatment based solely on a genetic biomarker.”

“The accelerated approval was for solid tumor cancers not eligible for surgery or that have spread in patients identified as having a biomarker called microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR).
Tumors with those traits are most common in colorectal, endometrial and gastrointestinal cancers, but may also appear in cancers of the breast, prostate, bladder and thyroid gland.”

 

There are many promising new, targeted treatments

Immune checkpoint inhibitors to treat cancer
https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/immunotherapy/immune-checkpoint-inhibitors.html
List from the site:
“PD-1 inhibitors: Examples of drugs that target PD-1 include:
Pembrolizumab (Keytruda)
Nivolumab (Opdivo)

PD-L1 inhibitors: Examples of drugs that target PD-L1 include:
Atezolizumab (Tecentriq)
Avelumab (Bavencio)
Durvalumab (Imfinzi)”

 

Journal for ImmunoTherapy of Cancer
Novel technologies and emerging biomarkers for personalized cancer immunotherapy
https://jitc.biomedcentral.com/articles/10.1186/s40425-016-0107-3
From the article:
“These therapies are revolutionizing therapeutic concepts and changing the standard of care for cancer treatment. Immunotherapy is now widely accepted as a key component of the therapeutic strategies to control and potentially cure cancer. Moreover, immunotherapy has the potential to cure or convert cancer from a fatal disease into a non-life threatening or chronic disease. The concept of a “clinical cure” is emerging as a description of long-term tumor control. The broad potential for a clinical cure is now being extensively explored by both mono and combination cancer immunotherapy.”

 

Modern, highly targeted radiation therapies

Heidelberg Ion-Beam Therapy Center (HIT)
Heidelberg University Hospital
https://www.klinikum.uni-heidelberg.de/About-us.124447.0.html?&L=1
From the site:
“Ion beam radiation, also referred to as particle radiation. Protons and heavy ions are positively charged atomic nuclei (particles). Protons are positively charged nuclei of hydrogen atoms. Heavy ions are positively charged nuclei of atoms with a greater mass (at HIT, carbon, oxygen and helium ions are used). Ion radiation guarantees the highest possible precision. In addition, heavy ions have greater clinical efficacy than conventional irradiation with the same dose of photons.”

 

RINECKER PROTON THERAPY CENTER (RPTC), Munich, Germany
https://www.rptc.de/en/home.html
From the site:
“With Proton Therapy higher dosages in the tumor are possible and at the same time there are significant less side effects.”

Let the video explain:
RINECKER PROTON THERAPY CENTER: Proton Therapy

 

Radionuclide therapy

This method is effective in tumor cells with somatostatin receptors. Lutetium-labelled peptides are used to kill the cancer cells. If you like to know more, here is an article:

Lutetium-labelled peptides for therapy of neuroendocrine tumours
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3304065
From the article:
“Treatment with radiolabelled somatostatin analogues is a promising … tool in the management of patients with inoperable or metastasized … tumours.”

 

Noninvasive ultrasound surgery

MRI HIFU

Magnetic resonance imaging (MRI) guided high-intensity focused ultrasound (HIFU) surgery could beautifully complement cancer immunotherapy. Did you know that MRI HIFU was invented and developed by a Hungarian doctor? He lived and worked in the US. Unfortunately, he passed away recently. And did you know that Hungarian hospitals refused to purchase an MRI HIFU machine a few years ago? It is a wonderful tool! It is available all over the world! It is in the early stages of development as laparoscopy was over 10 years ago… It is very promising! Of course Hungarian idiot decision makers did not want one!

 

So, I discovered the brilliant entity called:

Focused Ultrasound Foundation (in the US)
And their website has the most comprehensive search tool if you would like to search for a HIFU treatment in a country by organ treated! Currently the database has 588 treatment sites globally!!!
https://www.fusfoundation.org/for-patients/treatment-sites/treatmentsites/list

It lists several Italian institutions offering commercial HIFU treatments for kidney tumors (no word regarding adrenal tumors…).

  • Careggi General Hospital, Florence Italy
  • Cisanello Hospital of University of Pisa, Pisa, Italy
  • European Institute of Oncology, Milan, Italy
  • Rome American Hospital, Rome, Italy
  • Sora Cancer Centre, Sora, Lazio, Italy

Always consult specific websites and it is best to contact the institution directly via e-mail or phone!

EUROPEAN INSTITUTE OF ONCOLOGY, Milan, Italy
HIFU Treatment
https://www.ieo.it/en/Patient-Care/Featured/HIFU
From the site
“IEO [Istituto Europeo di Oncologia] is the most advanced developing Center in using HIFU technology for cancer treatment in the West. HIFU is a cutting-edge, non-invasive technology, developed in China* for destroying cancer without scalpels, irradiation or needles. Interventional Radiology in IEO has the largest number of HIFU cancer treatments in western countries.”

*There are several different types of HIFU equipment globally.

 

Clinical trial and medical science resources:

https://clinicaltrials.gov

From the site:
“ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.”

 

https://www.ncbi.nlm.nih.gov/pubmed

From the site:
“PubMed comprises more than 27 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites.”

 

EUROPEAN SOCIETY FOR MEDICAL ONCOLOGY
The leading European professional organisation for medical oncology
http://www.esmo.org

 

Apps, Labs, Data, Image Analysis, In Silico Testing and Artificial Intelligence

Now about a research tool and service that could support treatment related decision making

The Oncompass app
https://app.realtimeoncology.com/#/login

On this site, patients and doctors can look up clinical trials ranked by relevance for specific cancers and doctors can also add their own experiences with treatments immediately! It is free! This is a Hungarian app of a molecular diagnostics company (Oncompass), but its users are global! I just discovered it recently (I tested it a bit, but I did not use it for treatment search). Could make the search for a treatment or even a cure so much easier! Plus, it empowers e-patients and helps doctors expedite info sharing regarding treatments globally!

Note: Today it is not (yet) the state delegated oncologist in Budapest, Hungary (where healthcare is not up to EU standards) who tells a patient that there is for example LOXO 101 in an open clinical trial (e.g.: in Denmark) and that Loxo Oncology takes patients for free (!) to international locations, for free (clinical trial related) treatment with one of the safest and most successful cancer drugs in development (it targets a select group with a rare genetic mutation… and for those with the mutation it is apparently amazingly effective and sometimes even curative even in very advanced cases). It only helps a very small group of people globally with a very specific mutation, but those people see amazing results and Loxo Oncology is looking for them! This isn’t something that a regular oncologist shares with you and you do not even know how many facts are not being shared with you that could potentially save or prolong your life! It is the multidisciplinary long-form blogger and digital artist (me, Regina Saphier) who will dig this up online (and not with the free Oncompass system that I just discovered recently… perhaps one day I am going to use that one too, but it is very difficult to register a patient in it without the cooperation of the oncologist, the patient and other doctors).

I immediately noticed that the Precision Medicine Calculator (by Oncompass) has no registration and login option for friends, family, patient advocates/advisers and other caretakers. Yet, in many cases, in such stressful situations, it is this support network that helps patients find answers. And I can’t believe how many internet domains Oncompass has… at least 4… it is really confusing. But I appreciate the idea of this free and global app. It “just” has to work well now, and for that people need to know about it and people have to use it (and it regularly needs to be improved).

Oncompass Medicine is one of the companies in Hungary that does oncogenetic testing (another superior genetic sequencing service is provided by PentaCore Lab). At Oncompass 58* 600 genes are tested when searching for a cancer treatment, and there are specialized support options beyond the lab work and that is very important. (*Update on October 19. 2017: Oncompass recently started to analyse 600 genes and the full exome of patients!!! Ask for the Oncompass All Dynamic Program!!!). At PentaCore Lab, 400 oncogenes are sequenced (Vivaton 400). Duna Medical only tests 65+27 genes. In the US there are tests with hundreds of genes (similar to the Oncompass All Dynamic Program and the PentaCore’s Vivaton 400 panel in Budapest). When personalized cancer vaccines are developed for a patient, the best thing is to have the entire genome sequenced (by entire I mean even the healthy genome). That helps you find the best treatment targets.

There is so much information all over the place, that both patient networks and doctors need a reliable decision support system. If I could make decisions about this, I would even make medical AI based Enlitic available to patients and their networks as well. There are patients and supportive people in those networks who could enhance care by using Enlitic. https://www.enlitic.com

 

You might have noticed that I mentioned several Hungarians in this blog post. So, why stop now? There is a brilliant AI based drug discovery start up in Hungary called:
TURBINE
http://turbine.ai
“Increase your laboratory success rate and reduce
time to trial with AI guided simulated experiments.
Turbine identifies complex biomarkers and designs effective
combinations by simulating millions of experiments each day.”

When I noticed Turbine, I did not have to think at all to know that this is brilliant! I wish this young company was advanced enough to permit patient side access to the system. Just imagine getting in silico hints about possible drug combinations that could help someone. Sometimes even drugs that are not cancer related can have a positive impact. Turbine, Oncompass and PentaCore Lab should create a partnership…

 

By the way, not only do patients need help finding the best molecular treatments, but people still need to find the best possible surgeons as well (etc.). I had to do such a surgeon search over ten years ago and the world’s best surgeon for the Hungarian patient was in the UK. That is still not an obvious thing that people can easily find online (You need statistics, like: How many such operations does that surgeon perform per year? How about his or her error rate? The top surgeon had a zero % error rate for a digestive system cancer and he used his own method that he was teaching during some of his operations… Go for that level of expertise, if you can! That is the safest.).

On top of that we also need insurance companies to realize that care is now global and this market has to be serviced globally, with locally acceptable fees.

 

Note: Oncompass Medicine also has a fee based, international cancer treatment research and cancer patient support service! It is the same kind of global cancer treatment research and cancer patient support that I am doing, but I do it for free. While I do this occasionally, Oncompass does this all the time and has excellent resources and a global network. If you can, it is probably a good idea to hire them. I don’t know how good they are. Let me know if you have any experience with them!

 

I am a big believer in self guided online learning. And so I coined the term: “self guided online health care”. Imagine having a personal robot that is connected to a medical AI. The patient could simply ask questions of the robot, it would connect to the AI and based on the lab results (a patient has at home or online), the AI could suggest different treatment options by scanning and comprehending the globally available medical research and treatment data. (I personally would prefer a more advanced, multitasking robot companion, or no robot, just the AI via my computer, tablet or smartphone.)

The Robot Will See You Now — AI and Health Care

A.I. VERSUS M.D.
What happens when diagnosis is automated?
http://www.newyorker.com/magazine/2017/04/03/ai-versus-md

 

My Game “Theory”

As I mentioned before, a global multiplayer online game could be developed for citizen scientists and medical students (even for doctors). By combining the available resources, a new level of information sharing could be achieved in a uniquely motivated network.

In both cases the data entry is one of the most problematic areas. Lab results should be both human and machine readable. People who e.g. play EyeWire or Foldit could be on-boarded in a new game that is about hunting treasures like life saving medical treatments around the world and building alternative treatment plans for patients. It is doable! And I am working on it! Let me know if you would like to fund it!

 

Precision medicine is simply not possible without participatory medicine. Demand better care! I know that it is easy to expect and really hard to do. But every little positive change adds to the chance of an actual paradigm change! I hope you find the right doctors and the most appropriate treatments for you, your loved ones and your community members.

You can connect with me via Facebook and LinkedIn. I am happy to help. No matter where you are from, no matter who you are: If you need help and if I can help, I will help! Pay it forward to others in need when you can. My time, energy and resources are limited, so please, respect that when you ask a question (note: I understand if you feel the need to explain the context). Thank you for reading my blog post! I hope I could help with at least a little something. Find many more blog posts on my three different blog surfaces in a multitude of subject areas! Live long and prosper! 🙂

 

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