Oncologists Guide to Curing Cancer using Abscopal Effect
From Computer Tyme Support Wiki
(→What's different about this treatment)
|Line 99:||Line 99:|
== What's different about this treatment ==
== What's different about this treatment ==
== 2 Step Process ==
== 2 Step Process ==
Revision as of 00:54, 6 November 2017
My name is Marc Perkel, and I am not a doctor. I am a cancer patient with a diagnosis of stage 4 adenocarcinoma of the lung (NSCLC). I have personally devised a treatment that seems to have worked by taking advantage of The Abscopal Effect. I'm a computer programmer and electronics designer; and I have 45 years of electronic repair experience - all self-taught - so devising novel solutions to these kinds of difficult problems is not new to me.
A claim of a cancer cure, especially by a non-doctor, is an extraordinary claim, and should be treated as such. However, before you judge who I am or if this is possible, I encourage you to actually read and think through what I propose here on its own merits. I think I'm definitely onto something. Even if this ultimately doesn't work for me, I think the fundamental concepts are correct. If this protocol were tried on 100 patients who otherwise had no hope at all, I think that some would walk away cancer-free. I'm convinced that if this method is fine-tuned and perfected, it has the potential to cure a wide variety of cancers.
My goal in writing this is to give a step-by-step instructional manual that is detailed enough so that any oncologist can understand and implement this treatment protocol. If:
- You are an oncologist who has a patient that you that you have exhausted treatment options for, and
- There's nothing for that patient to lose, and
- You think that what you read here makes medical sense...
Then I encourage you to give it a try. The actual protocol involves:
- Standard drugs that are already commonly used in oncology, combined with
- Radiation used in a way that is a bit unusual, but easier to set up and safer than a standard radiation treatment.
- A process that should involve no discomfort to the patient and should at least not make things worse.
If you are a patient or caregiver, and you or someone you care for has no other options, then take this plan to your oncologist and ask for this. If your oncologist refuses and doesn't offer anything better, then change oncologists until you get a "yes." Even if it doesn't work and you die, you are no worse off than you were.
This is experimental. There are no guarantees.
However, your success, if you ARE successful, will inspire further development and refinement of the protocol. I am sure there is a lot of room for improvement.
So... if you will... read on!
The Abscopal Effect references a process that effectively cures cancer - even incurable cancers - by triggering the immune system to recognize the cancer, identify it as "other," and fight it. It has been observed for decades retrospectively when it happens. However, no one has really figured out WHY it happens, or even more importantly, what to do to MAKE it happen. It's obvious to me that figuring out how to reliably trigger the abscopal effect would be The Holy Grail in the treatment of cancers, and therefore a worthy goal, one that I set out to achieve.
Typically, The Abscopal Effect occurs in patients receiving immunotherapy drugs in combination with radiation. A typical scenario begins with a patient receiving chemo, then then trying immunotherapy, without success. As the disease progresses, a lung tumor begins bleeding, and palliative radiation is performed to stop the bleeding. Then, instead of dying, the patient starts to improve. Not only does the irradiated tumor die, but all other cancer in the body dies as well. This is a rare scenario, and it takes a long time to realize that it HAS happened.
I looked at the problem - how to trigger The Abscopal Effect - not from the perspective of an oncologist, but rather an engineer and a troubleshooter. As anyone with my job will tell you, often you CAN fix things without really knowing anything about the device you are fixing. It's more about patterns and processes and persistence; and solutions don't always come from the places you would expect. So, even though figuring this out was a long shot in the extreme, as Elon would say, "success was at least one of the possible outcomes."
- In cases where The Abscopal Effect was triggered, what were the common conditions?
- What is The Abscopal Effect really?
- And, more importantly, what steps need to happen for The Abscopal Effect to occur?
But before I get deep into the theory, I want to tell you about my treatment, so we all know what we are talking about. Then I'll go into more detail as to why it works.
First - a little background. On August 1, 2016 I was diagnosed with stage 4 adenocarcinoma of the lung (NSCLC) at the age of 61... Kind of a shock for a non-smoker and anti-smoking activist. According to Google, the mean life expediency was 8 months.
I started off with an unconventional treatment that I also came up with myself, but it was in part a copy of a phase 1 study that seemed promising. That treatment involved combining six drugs, and it was somewhat successful for a while. I had always thought that the immune system was the key, but wanted to buy time for the technology to develop. I'm still taking 4 of these drugs, Metformin, Melatonin, Niagen, and Pterostilbene. The last three can be purchased without a prescription on Amazon. Metformin is a prescription adult-onset diabetes drug that is fairly easy to get.
My oncologist was impressed with the results. The combination stopped the cancer's growth for a while. Then in April of 2017, scans indicated that the tumors were growing again. That was to be expected. At that point I was out of acceptable options as I am someone who puts quality of life ahead of quantity. My oncologist said if I had any ideas to let him know. Two days later... I had an idea.
My solution was to start with an infusion of immunotherapy drugs followed by radiation. We chose Ipilimumab (Yervoy) being PD-L1 negative. Ipilimumab had been involved in a lot of abscopal cases. It's an older drug, which is likely the reason it has the highest case count. I think it is likely many similar drugs would work just as well, or maybe even better.
Two days after the infusion, I got the radiation. The treatment was something that I designed, and was rather unusual. Rather than trying to kill the tumor with radiation, the idea was to burn a hole in the center of the tumor, leaving most of the surrounding tumor undamaged. My target tumor was 7.6 cm, and the radiation target was about 3 cm in the tumor's center - a region that was shaped like a hockey puck or small can, a cylinder at the core of the tumor. The size was about 1/3 or less of the tumor's total volume. This was done with a rectangular beam on a rotating head so that all the beams crossed in the center. The Varian x-ray machine was set to 9 million electron volts. I received 9 gy per fraction, three fractions per day, for three days in a row.
The reasoning behind this geometry is that by only hitting the center of the tumor, the collateral radiation is still mostly inside the tumor. It is very important to have a large ratio of radiation exposure of cancer tissue to normal tissue and this geometry provided this contrast. And because only the center of the tumor is targeted the total radiation exposure and risk to the patient is greatly reduced.
It is important to understand that we are not counting on the radiation itself to kill the tumor. The goal is to turn the immune system against the cancer and let the immune system do the killing. What we are doing is creating a school inside the tumor so that the immune system will learn the cancer. It is important to understand this is a school and not a battlefield, so the radiologist is being asked to go against their instincts and to not fry the whole tumor.
It is important that dead cancer be in contact with live cancer to trigger the abscopal response. After the tumor is damaged, but not killed, the tumor will attempt to heal itself. The healing is a good thing because it brings in the immune system. The damage needs to be extensive enough to overwhelm the local TILs and require lymphocytes from the outside be brought in to the fight. When the immune system arrives to try to heal the tumor, it finds necrotic cancer, what is called "bad death," and this is a signal to the immune system to classify this tissue as enemy. The dead cancer reveals its antigens, and the immune system picks that up.
Four days after the radiation I came down with a fever of 101. I thought, "Is this the fever I was hoping for?" A fever is caused when the immune system is going after something. In this case, it's the immune system attacking the cancer. Two days later the fever broke, and most of my cancer symptoms - but not all - were gone.
I don't have any final images yet that indicate success or failure, but I am still alive and feeling pretty good right now, almost seven months after my "median death date." If I have not and do not succeed - even if this doesn't end up working for me - the process makes so much sense that it should work for some people, and if it is perfected, should work for A LOT of people.
The important points here are:
- 1. This process itself isn't that unusual, and
- 2. Any oncologist has access to these drugs, and
- 3. The radiation is actually easier to configure and safer than a normal treatment.
Therefore, this protocol is something that can be tried now. If you are an oncologist, perhaps you have ideas about how to improve it. My goal here is to encourage people to build on these ideas and beat cancer. I might not be out of the woods either, so maybe when I need something else, something else will be available to me.
Asking for this Treatment
If you are a patient you might be wondering, "How do I get this treatment?". First of all it isn't likely that your oncologist is going to just offer it to you. And this isn't part of a trial group that you can join. You are going to have to ask for it, and perhaps insist on it. You may need to fire your oncologist and find one who is willing to think a little outside the box.
Not all oncologists are alike. Many of them will only give you what's on the menu, no variations. They have essentially a script and you're only going to get what everyone else gets based on current standards of care. They also might be working for an institution that doesn't allow variation, in which case you might have to change medical plans.
What you minimally need is an oncologist who is willing to do a little creative thinking, understand what I'm suggesting, agree that the idea looks promising, and be willing to give it a go. And it should be not too hard to do in the context of:
- You are out of options, you are facing short term certain death, and you have nothing to lose.
- This procedure uses standard drugs and radiation equipment and nothing oncologists aren't familiar with.
- You should go into this assuming you are going to die anyway and this is not a miracle cure.
If you are already receiving radiation, especially palliative radiation, ask for an infusion of immunotherapy drugs just before radiation.
If you are already on immunotherapy drugs, ask for a radiation treatment just after an infusion. Tell them to find a nice big tumor and burn a hole in the middle.
The question you have to ask yourself is, are you willing to die because of someone's policy? For me the answer was - hell no!
If you are an oncologist and you have patients and this treatment makes sense to you then - why not give it a try. I don't even think any of this is off label. What's new is the combination and sequencing and the radiation is a little unusual.
If you are a radiologist and you are reading this it is important to realize that this is counter intuitive to your training. The important concept to keep in mind is that the goal is to create a sample of dead tumor for the immune system to learn and not think of the radiation being the mechanism that kills the tumor. My radiologist did 3 fractions of 9gy over 3 days. My friend at Varian recommended a single 24gy fraction with a 2-3cm target in the center of a 7.6cm tumor using flattening filter free mode. This is with the head rotating so that all the beams cross in the middle. Imaging a can shaped tumor that is in the center of the real tumor and that imaginary tumor is your target.
I also recommend using oxygen with the treatment to reduce tumor motion and the O2 improves radiation response. I didn't get that but I think it would have been better if I did.
The above should be enough information to try it, but I'd like to share more details that might help doctors understand the process on a deeper level, and figure out how to improve it. I will also share ideas on how it might be modified to be used for other types of cancers.
What's different about this treatment
If you google immunotherapy and radiation together and abscopal effect you will see a lot of material on other people trying to do something similar. This is part of why I think I'm on the right track as the smart people are trying to do the same thing. The pain aspect of what make my suggestion different is partial radiation of the tumor.
2 Step Process
The beauty of this process is in its simplicity. It's just 2 steps.
- Jack up the immune system with drugs.
- Damage a tumor by killing about 1/3 of it while leaving normal tissue undamaged.
Then you wait for the fever which might occur a few days tater. I also followed up with 3 more infusions of immunotherapy drugs in case there was an abscopal effect in progress and it needed a boost. I have no idea if this is necessary - but that's what I did.
The Immune System
Other than the brain, there is probably nothing in the body more complex and less understood than the immune system. Many of you who are not doctors reading this might be wondering why I'm so fixated on the immune system. I'm fixated because the immune system is what keeps everyone from getting cancer.
Cancer isn't a foreign disease like getting the flu. Cancer is you. It grows from your normal cells. And because it is you, it is harder for your immune system to distinguish it from healthy tissue. Even though this is the case, the immune system is both very smart and very sensitive, and it is generally capable of seeing the difference. It smacks down cancer all the time. Everyone gets cancer, but the immune system gets rid of it, at least until it doesn't.
When you get cancer it is because a cancer formed and your immune system failed to stop it. This failure to stop it could be because;
- your immune system is too weak to defeat the cancer, or
- your immune system doesn't see the cancer and can't distinguish it from normal tissue. or
- your immune system sees the cancer, but has incorrectly classified the cancer as "self" or "friend."
This treatment is based on the last condition, that the immune system has wrongly classified the cancer as friend. Therefore the objective of this treatment is to reprogram the immune system to reclassify the cancer as enemy. Once the immune system sees the cancer as enemy it clears the cancer everywhere, down to the very last cell.
Most people's immune systems are capable of killing the cancer, it just chooses not to for some reason. Thus, if one could get the immune system to see the cancer and classify it as "enemy," then the immune system can cure the cancer - everywhere - down to the very last cancer cell.
I am in the spam filtering business. I block junk email for thousands of people and with very good accuracy. It's fortunate that I'm in this business because the way my spam filter works and the way the immune system works are very similar. Both have the same tasks. They have to evaluate email messages or cells and make a binary determination as to friend or foe. Since they are doing the same thing, then it wouldn't be unusual for then to share some of the same processes, even though they are completely different technologies. For example, hydraulics and electronics are completely different but they share the same formulas as do a great many things. In this case, realizing that the immune system is really an information processing engine allows one to see the problem in a different context. We have a programmable weapon and all we need to do is change the programming.
The Adaptive Immune System
The adaptive immune system is the part of the immune system capable of learning. How it learns is beyond my pay grade. It is completely different than computer technology, but it shares some of the capabilities. One doesn't have to understand how it works if you can imitate the processes than make it work. "Monkey see, monkey do."
For example, doctors learned that for many diseases, if you recover from it, then you never get it again. Once your body learns a disease, it remembers it. If it shows up a second time, the immune system knows what it is, and what to do. From this observation, a doctor injected a weakened form of an infection into patients, creating a vaccine. Vaccines teach your immune system what the enemy is, so that when it come along, your immune system attacks and destroys it, without you ever knowing it.
The important thing to know about vaccines is that vaccines are not a form of medicine in the same way that antibiotics are. Vaccines don't kill anything. When you receive a vaccine, you are downloading data. It's just new information. It's a database update. It's programming.
If you have a computer and you're running antivirus software, and you download a virus which it doesn't recognize, the virus runs. But then you download an update to your database of virus definitions, and now the antivirus programs "sees" the virus software, and eliminates it. What I'm doing is essentially the same thing. When things go wrong, it's because the immune system doesn't see the cancer, or sees it and misclassifies it as "friend." The goal of this process is to update the database and reclassify the cancer as "enemy." so that the immune system attacks the cancer and eliminates it.
Thus - the problem is - how do we take the identifying information that is in the cancer and extract it in a way so as to expose it to the immune system with a classification signal that tells it, "This is the enemy?" How do we produce an in situ vaccine that will cause the immune system to attack the cancer?
Understanding Autoimmune Disease
What is autoimmune disease? Autoimmunity happens when your immune system starts attacking normal, healthy tissue. It's sort of the opposite of cancer, in that cancer should be killed and it's not, and autoimmunity causes the killing of something that shouldn't be killed.
One of the side effects of radiation treatment - especially when done concurrently with immunotherapy drugs - is an autoimmune response against normal tissue, especially normal tissue damaged by radiation. Often when radiologists burn out a whole tumor they partially irradiate the surrounding normal tissue, and the immune system goes after that. Does this sound familiar? It should, because that's in part my inspiration for my treatment protocol. I basically took the process that causes autoimmunity and applied it against the cancer.
It turns out that the abscopal effect and the autoimmune response are the same thing. It's like the difference between weeds and flowers. Instead of trying to avoid an autoimmune response, my process tries to create it. And because the radiation target is small inside the tumor, exposure to normal tissue is minimized.
Improvements and Variations of my Treatment
Here are things I haven't tried but might be useful to oncologists who might experiment with this treatment.
Because I had a large lung tumor, we used Varian's equipment, but there was still movement from breathing. I trained myself to do fast shallow breaths to the motion, but a better way, in my opinion, would have been to give me pure oxygen. This would have allowed even shallower breathing or very long breath holds, which would allow more precision for smaller targets. Oxygen also has advantages in helping heal radiation damage in normal tissue and kill damaged cancer cells at the same time. But if the tumors were smaller, I would go with the cyberknife. Although I wasn't given oxygen, I did increase oxygen to the area using heat to dilate my blood vessels to carry more blood. I have a heated car seat and put it on high for the 1 hour drive to the radiologist and back.
Because I had lung cancer, freezing the tumor was not an option. However if there is an accessible tumor I think freezing the tumor might be more effective than radiation. As with radiation, you don't want to freeze the whole tumor, because if you kill the tumor then it doesn't try to heal, and you don't get the abscopal effect. But you CAN freeze the surface of the tumor to create a nice big patch of dead tumor for the immune system to learn. Freezing reduces damage to normal tissue and should be much easier to do for many cancers. Freezing has also been known to cause an abscopal response.
I would also think that an injection of the right kind of poison into the tumor could do the same thing. This would work for any tumor that can be reached by a needle. making this a very low tech treatment. . You would want something that acted very locally and didn't spread around. Again, the idea is to kill only a piece of the tumor so that the tumor tries to heal, without damaging normal tissue that could lead to an autoimmune response. I haven't heard of anyone trying this but it seems like it should work. Perhaps a vaccine adjuvant can be added to the poison to help classify the cancer as enemy.
I chose Ipilimumab, and I have no idea if I made the best choice. It might be that I got lucky. It might be that any immunotherapy drug would have worked. It may be that through future trials we can test and tune for the best drug for each patient. Perhaps using multiple drugs together is even more effective. In fact, if my first attempt hasn't worked, I'm going to try some combination to amp up the immune system even more. Hopefully I won't kill myself in the process. I'm looking at some combination of these drugs:
- Ipilimumab (Yervoy)
- Nivolumab (Opdivo)
- Pembrolizumab (Keytruda)
I'm going to have to guess as to the amount and the sequencing of these drugs, and then how long to wait afterward administration/infusion to do something to damage the tumor(s). The idea here is to figure out what you have to do to put the immune system in learn mode. Perhaps the use of vaccine adjuvants would help?
This treatment might not be a one shot event. I got 3 more infusions of the drugs after the initial treatment. There may be some optimum post treatment protocol to make sure the treatment sticks. And there will be imaging scans and dealing with scar tissue that needs to be dealt with. It is also possible that this process needs to be repeated several times to make it stick. And there's the psychological treatments. Going from terminal to cured is not as easy as one would think.
As of this writing, I do not know if my first attempt at the protocol I created succeeded, and if so, to what extent. There is a possibility that I have completely beaten the cancer, and it's just a matter of time (probably a lot of time) to be declared cancer-free.
It is also possible that nothing happened... That I'm delusional, and have a very slow-growing cancer, and would be no worse off had I attempted nothing. It is, of course, extremely easy for a person to fool himself into believing anything comforting when confronted with a fatal diagnosis. I understand this, so I can't rely on my own perception to determine my status.
It is also possible that I still have cancer, but that I triggered a partial immune response, but didn't achieve a sustained response. Perhaps I started an abscopal effect, but I ran out of the right kind of T-cells before they finished the job. I might have to repeat the process in order to succeed.
I still might die
There is no guarantee that this process will work for me. I am convinced that I'm on the right track, and that if this process were applied to a lot of people, that it would work for some of them. If I do die, it doesn't mean it doesn't work. It only means it didn't work for me. Regardless, I'm still facing having to survive complications from the cancer. I've had pneumonia at least twice (possibly three times) since I was diagnosed; and the pneumonia may get me eventually. I'm also still coughing up some mucus, and that is not a good sign.
Going public with this treatment early
Why am I going public with this and recommending it before it has been proven? Because I'm convinced that I'm on the right track, and I'm also fully aware that there might not be a happy ending for me. If I wait until I'm positive, I've lost valuable time when this could have been helping others. If this is a good idea but fails for me, then I've wasted a good idea. If I'm totally wrong and it ultimately doesn't work at all, the idea is still good enough right now to be worth trying and testing. In research there are often dead ends, and this could be one of them. Someone reading this might try it and die anyway, possibly even sooner. Life isn't always fair. I'm an anti-smoking activist and I have lung cancer. How unfair is that?
So, my disclaimer is this:
I'm not a doctor, but it's my opinion that this is worth trying. If you read this and you think that I am onto something, and you try it, I wish you the best of luck.
How I came up with this solution
A little more about me, for those who are trying to understand how a non-doctor managed to figure out something that millions of doctors (and billions of dollars) couldn't. Seems kind of an extraordinary claim, even for me. Perhaps this is all a dream, and none of this is real, including you - the reader.
But for a more serious answer: There was a lot of luck involved. Quite frankly, the oncology community was already 99.9% of the wy there. What I did was like scoring the game-winning touchdown by finding a football on the 1-yard line. I just picked it up and walked it into the end zone. So... Do I deserve a Nobel Prize for Medicine for doing that?
Yes - I do!
It is not unusual for me to solve problems that no one else can solve. I am self-educated in a great many things, and I have very broad knowledge of everything science-related. I have 45 years of experience in computers and electronics, including computer designs and electronic design. I spent many years as an electronics tech repairing a wide variety of equipment, including medical equipment. I had some knowledge of medicine, but had always avoided what I called the "gooey sciences". It's hard for me to watch the needle stick when I get a blood test.
I am someone who thinks outside-the-box to the extreme. I'm so far outside-the-box that I don't even know what the box is, or how people get inside it. I also don't have any self-imposed limits regarding being able to do things that most people think are impossible. This is not the first time I've done something that no one else has done before.
When I got the cancer however, I did not expect that I would beat it. I thought I would likely do a little better than average, and I'd get a year (rather than the median 8 months). I fully expected to be dead by now. All of my longtime friends thought I'd figure out a way to beat it. I did not share that belief. I was prepared to be dead. I lived a really good life, and did more than most people do in 100 lifetimes, so I felt like I got more than my share. After all, I was never going to have to live in a world without me in it, so I felt sorry for the rest of you. (I still secretly believe that the universe is 62 years old and when I die - the universe dies with me.)
Having accepted the inevitable, my life became more of a game. I love solving puzzles, and I wanted to see how far I could get before the clock ran out. Just because no one else could solve it, didn't mean that I couldn't. I'm used to doing that, so I wasn't intimidated. And as a Star Trek fan, I found myself identifying with the Klingons. When a Klingon is fighting a hopeless battle, the quality of the fight becomes the most important thing. If I am to die, then let me die with my hands around my enemy's throat.
This background is important to understand how I think, because I think differently than most people. I am not burdened with the junk that goes through the minds of most people, and being self-educated, no one was there to teach me what I can't do. If there's anything to be learned, this is it. It is also possible I have a better than average memory, and I can process more variables at once.
Crafting the Solution
Sometimes I think backwards from the solution to the problem, working it at both ends simultaneously:
- "This is where I am."
- "This is where I need to get to."
- "This is what I have to work with to get there."
At the solution-end for stage 4 cancer, immunotherapy was the only possible complete cure I saw. When you understand the immune system, it's easy to see why that's the case. But when I found out about the abscopal effect... Well, that's it! Here's another complete cure, but one that was happening incidentally and accidentally. My mission was to make it happen purposefully: To find the method of triggering it.
The first task was to understand as much as possible about the abscopal effect. It was clearly the end result of a sequence of events. My reasoning was: If I do every step of the sequence, then it will happen for me. That's the key: Getting all of the steps right. I asked myself, "What was everyone else missing?"
As a tech fixing equipment that I didn't know how to run, I had learned that I didn't need to know everything. All I needed to know was how to fix it. I didn't need to completely understand it. Also, sometimes it's not what you know, but who you know. I educated myself in oncology by reading a lot of stuff from Google searches and watching countless hours of YouTube videos. One of the things I learned from past experience is that a lot of important people will answer your email questions, especially if they are interested in what you are trying to do. So I started emailing important people in YouTube videos I watched. I explained my goal to them, told them how I wanted to get there, and asked them for their advice. Almost everyone I emailed responded with very helpful information.
So, this wasn't me figuring this out from scratch. I had a lot of really smart people helping me. But everyone else was focused on a narrow piece of the picture, and I needed to put all of the pieces together into a sequence, combining all of the the knowledge and experience from experts in each and every step of the process.
Solving the problem backwards
Sometimes I solve problems backwards, starting at the end and working my way back to the beginning.
Imagine that it is sometime in the future, a time when cancer is cured. In the future, we are remembering the process that made the breakthrough happen. What was it that finally worked? Was it hard or obvious in retrospect?
Let's start with who is being cured now. It's very rare when a stage 4 cancer goes to cured. Most often, the best a patient can hope for is to control it, and only for a while. But when we look at those who go to completely cancer-free, it's almost always an immune response that did it.
The immune system is also the obvious choice. It is capable of identifying every cancer cell and distinguishing it from normal tissue, and it's capable of killing it. Like a bloodhound, all the immune system needs is a whiff of the cancer's scent, and the attack order.
So, how to we get the scent? The identifying proteins (antigens) the immune system needs to learn are out of reach, inside the cancer. What we need is to expose those antigens, to get them out of the cancer mass, put them in contact with CD-8 T-cells, and yell, "attack!". How do we do that?
That's where the abscopal effect comes in. These are the cases of people being cured. But when does that tend to happen? The most common scenario involves a combination of immunotherapy drugs and radiation. I'm convinced that it doesn't have to be radiation - you just need deads cancer cells. It's the dead cancer that is half of what makes it happen.
So we need to find some cancer, and we need to make it dead. Then what?
We know that the immune system has to learn from the dead cancer. So there has to be physical interaction between the dead cancer and the immune system. How is that possible? Where does the actual contact occur?
I did notice in abscopal stories that many involved palliative radiation, radiation to ease discomfort or stop a tumor from bleeding.I pictured in my mind this radiation-induced dead spot on a live tumor and I realized - that's where it happens! The tumor has blood vessels carrying white blood cells, and the tumor is going to attempt to heal the damage. THAT is what triggers the abscopal effect.
Then next thing I considered was autoimmune responses. What are they? What cause them? Why does it happen? Well, you take immunotherapy drugs and you kill a tumor with radiation, but during the radiation treatments, you burn a lot of lung tissue, and then the immune system starts attacking the lungs. The lungs were fried and then the lungs tried to heal and you trigger an autoimmune response. It was then that I realized that an autoimmune response and the abscopal effect are the same thing. What I really needed to trigger was an autoimmune response against the cancer.
Instead of looking at rare abscopal events as my template, I started looking at autoimmunity - a far more common occurrence - as my template. There's a ton of information out there about it, and how to avoid causing it. All I had to do was reverse my thinking, and translate information in how to PREVENT it, into instructions for how to CAUSE it. I needed to design a procedure to trigger an autoimmune response targeted specifically at the cancer.
Now, it's no longer a medical problem, it's an engineering problem. Now it's geometry and math. My world! I used to fix televisions back in to 1970s, when every set had a picture tube - electron beams controlled by magnetic fields, and an electrostatic field used as an accelerator. An x-ray machine for treating cancer is the same thing, just more voltage, and different beam controls. So to me, this was the easy part. But, it's been a long time since I repaired TV sets, so I emailed Varian, the makers of the machine. They replied, and were very happy to help refine the theory. Ultimately it was simple: Burn a hole in the center of the cancer mass. I was able to clearly communicate what I wanted to Dr. Millender, and she implemented it.
It is important that I talk about how I figured it out, because this isn't just a procedure. It's a new way of looking at the problem and a new process for solving the problem. One of the things I ask myself is, "How is it that a non-doctor figured this out?" And part of the answer is that you need a wide perspective, and you have to think more like a computer programmer and an engineer.
I am a broken device.
This is a repair job.
If I did figure this out by thinking differently, then how I solved the problem might be more of a breakthrough than the solution itself. You always have to ask yourself, "Is there a better way to envision the problem? Are there faster methods to get to a solution"?
Justifying taking control
The actual solution is very counter-intuitive to people in the oncology world. Radiologists, for example, are trained to kill every last cancer cell that they can possibly hit. Asking them to leave cancer tissue undamaged when they can hit it, is almost blasphemous in their world. My first radiologist couldn't make herself do it. Oncologists do everything they can do to prevent autoimmune disease, and I was trying to cause it. And last but not least, the idea of a non-doctor patient being the lead in designing the treatment is something that never happens. The hardest part was selling that concept to my medical team.
The way I saw it, I was looking at short term certain death, so there wasn't anything I could do that was worse that what they were offering me. There was nothing more to lose, and I could at least gain the Klingon death. I made that argument to them. In California I qualify for suicide pills, so I said, "If you can give me suicide pills, you can morally give me anything else, and danger is not an excuse not to. My life, my death, my choice"!
If I hadn't found Dr. Yavorkovski I would not be here to tell the story. He understood my reasoning at each step and he listened to my Klingon death wish. I think he decided that if I wanted to fight a hopeless battle, that he would support me, and since my various plans actually made sense, he respected that. He went out of his way to make it happen, and he fought for me. I could have come up with the grand ideas, but without the support of the doctors, there's no way it was going to happen. If it had been anywhere but Kaiser Permanente, it would never have been approved.
As I said, they were already very close to the solution. The final step was counter-intuitive, but because my background is different, I was able to put together the final step, which was only partially damaging the tumor, so that the tumor would try to heal, bring in the immune system, and turn the tumor into a school for the immune system. Although this all seems like my idea, and I do deserve some credit, there was a lot of luck involved. But... Since there was bad luck to start with (I got cancer in the first place), it stands to reason that I deserve to get lucky.
I also am self-employed, and I work from home. I make good money with very little effort, so I had a lot of free time to work the problem. Most people wouldn't have had the money and time to do what I was able to do.
I'm also persistent. I don't take no for an answer. I don't accept limitations on what is possible. I also have a lot of friends and smart people helping me. That's the kind of environment where what we call "luck" happens. Without the support I got, this wouldn't have happened.
OK - getting ahead of myself here but if I survive and I did figure out a cure for cancer, or even a process that leads to the cure for cancer, don't I deserve a Nobel Prize in Medicine? And should it matter that I'm not a doctor? If you don't get a Nobel Prize for curing cancer, that do you get a Nobel Prize for? After all, I enjoy bragging and I promised my cancer support group that if I figure out how to cure cancer, that I will spend the rest of my life bragging about it, and that I will be insufferable! So - I have to keep my promise. (I'm the class clown of cancer support group.)
I was teasing my oncology nurse at Cancer Group meetings saying that I felt guilty that I was going to cure cancer and she would lose her job! Maybe she can go back to China and assemble iPhones for a living. She said it would be worth it.
People who helped me come up with this treatment
There are a lot of people who have been helping me. I have a lot of friends. But I want to acknowledge the people who helped me figure this out, and allowed me to actually get the treatment to make this happen.
First of all, I think that if I wasn't a member of Kaiser and living in California, I would likely already be dead. Since Kaiser is both the hospital and an insurer, they have given their doctors real power to make decisions, and get patients the care they need very quickly without having to call an insurance company to get every step approved.
I also want to thank Varian Medical Systems for their help and ideas relating to designing and advising me on the radiation protocol, and their ideas and encouragement to try to trigger the abscopal effect.
- Dr. Leonid Lavar Yavorkovsky (MD) - My oncologist who lets me do anything I ask for, as long as it makes sense.
- Dr. Laura Ellen Millender (MD) - Radiologist who cooked my tumor, and roasted it the way I wanted it roasted.
- Brandon Hoang Nguyen (LCSW) - Counselor at Kaiser Oncology
- Grace Sun Daun (NP) - Oncology Nurse who catches it when I get pneumonia. (And I don't mean gets the infection from me.)
- Dr. Vasumitha Alamelu (MD) - My general Doctor.
Varian Medical Systems
Varian makes the x-ray radiation equipment used in my treatment.
- Dr. Corey Zankowski - Chief Innovation Officer
- Dr. Deepak “Dee” Khuntia, M.D. - Chief Medical Officer
- Dr. Polly Matzinger - National Institute of Health, Chief, T-Cell Tolerance and Memory Section - Dr. Polly is the one who developed the "Danger Model of Immunotherapy" which is the new most advanced model of how the immune system works and how to program it. She took the time to share advice with me by email that allowed me to fine-tune this process.
- Dr. Silvia Chaira Formenti, M.D. - Sandra and Edward Meyer Professor of Cancer Research, Chairman, Department of Radiation Oncology, Associate Director, Meyer Cancer Institute, Weill Cornell Medical College, Radiation Oncologist in Chief, New York Presbyterian Hospital - Dr. Silvia spent a lot of time discussing my plans by email, and was also helpful in giving me a deeper understanding of the process. She was part of a team that also cured a patient using the abscopal response, that was similar to what I did.
Education in Oncology
- The Great Courses
Friends and Family
I can't possibly list all the friends and family who have supported me through this. I'm going to put together a short list of people who were critical to my survival.
- Leslie Lacour
- Phil Case
- Joyce Main
- Marian Sanders
- Tammy Talpas
- Junko Bordelon
- Blair O'Malley
- Michele Kaeder
- Atia Schreiber
- Ron Dutra
- Roy Perkel
- Rachel Perkel
- Shawn Becker
- Aaron and Abigail Becker
- Matt, Mary, and Ben Drummond
- Paul West
- Michael Dowd
- Becky Carol
- Sue Ferguson
- Lisa Rein
- Angel Raich
- Andrea Chiang
- David Proulx
- John Kovac
And everyone else who helped me who I might have forgot to mention by name.
If you want to get more detail and additional information, visit my cancer index, and read my other writings. There are also links to other articles and videos that were important to my research. I give fantastic interviews.