BRUMMBAERS-C-WORD-BLOG: THE DEADLINE IS INTERNAL!

Last year's last blog ended like this: “...and, naturally, I will keep painting and animating and writing until they 'Peel My Cold Dead Fingers From Around My Mouse...'”
Particularly from Germany I got worried responses, like I was going to roll over and die. I was, of course, joking – I quoted the late Charlton Heston from a speech he held at the National Rifle Association – I just exchanged the word “gun” with my tool: the “mouse”.
No, I'm definitely not rolling over to die! That will happen anyway -- some day, but I have no power of decision over that matter. (As far as I know.)
The beginning of 2013 was everything but enticing: I was diagnosed with a returning bladder cancer, this time in a more dangerous variation – as muscle invasive. And, for a double punch, we had to move, because the house owners had miscalculated their finances.
I had the unbelievable luck to be a patient of some of the smartest and most generous doctors I ever met. So instead of getting a radical cystectomy, which still is the standard treatment, I happened to be one of the first people to experience the latest refinement in HDR Brachytherapy, applied to the bladder. It was explained to me that this therapy was only practiced in three places in America and that UCLA Radiation was one of them. I felt very lucky!
And lo and behold: The therapy worked, half a year later we can tell that there is no muscle invasive cancer left!
Too bad another, superficial cancer would use the opportunity to settle at the dome of my bladder, which was not planned for. So instead of starting the new year with a clean diagnosis, it will be another unpleasant struggle to get to a point where I'm healthy enough to make plans.
I have so many things to do, that even at the moment, unemployed and without deadlines, I hardly manage to get things done – too little time – even without a deadline. (No pun intended!)
The Deadline is Internal!
Last year I found myself confronted with a headline: “34 Medical Studies Proving Cannabis Cures Cancer!” I will put them into an appendix below.
I checked all 34 studies, they are all very interesting and informative, but don't live up to the headline. These studies are mostly “in vitro” or with mice and rats. There is just one study with humans, a pilot study of 12 people with brain-cancer. It's from 2006, all patients died eventually, because they used a group of terminal patients, all had failed standard therapy before. But the procedure was safe and seemed to slow down tumor growth at times.
All this sounds very promising, except for the endless tests and studies that the AMA and FDA demand, which will slow down progress, and it might be too late for me.
Safety and toxicity should not be a problem with cannabis – there are a few thousand years of usage without major accidents, but we also have to take into account that this is a very different world now. We are using chemicals, compounds that have just been invented, particularly to cure cancer, and we don't know what kind of unexpected synergistic effect they might have with cannabis.
Even with something as safe as cannabis, I would suggest utmost caution, because when you are the one that has the cancer – errors might result in your death.
On the other hand – doing nothing is not an option – and whatever it is you do -- or not do – might result in death anyway... So there...
But Cannabis oil is expensive if you take the recommended doses for cancer, 60 grams for nine weeks – about $5000!
Then, last day of the year, a friend appeared like an angel out of Knowhere and offered to provide me with the necessary substance. I was elated and could not believe my luck, which did not last that long... My friend's friend died, and for now everything that had to do with oil was postponed until some other time. Understandably.
Yesterday I sent the letter below to my doctors.
I find myself in the unique situation of somebody who just was the recipient of a great present where the latest and smartest technology was used with impeccable precision, and endless rechecks,
to make sure I would still have a bladder at the end of this, but no more cancer. And they did it!
It was my miserable bladder that already had to start on the next wave of attacks. To my advantage – the diagnosis is early, but what in oncology nobody wants to do is to understage cancer.
They will shoot with cannons at sparrows! (Not in my case, but they do – I've seen cannons up there, definitely cannons, big white cannons!)
To sum it up – I'm feeling better every day. There still is a long list of lingering effects from chemo and radiation, but mostly-- I'm not in permanent pain anymore!
Still, I will go to the doctor and say: “Ok, doc, fill me up! I was feeling way too good – I need a bit of realistic pain, to be reminded who I am!”
“But please be gentle, it is my third time only.”

This is my letter to my fantastic doctors:

Indeed the miracle has happened, we lost the muscle-invasive cancer, without removing my bladder!

That in itself is a success that goes far beyond what the standard therapy could have promised me.
So I want to thank everybody again for the excellent work and care that I received.
But it's too early to celebrate, because of this nasty little carcinoma in situ at the top of my bladder, which was just waiting for the holidays to be over, and is now busy turning into an even nastier, muscle-invasive version. Dr. Chamie, my urologist and head of UCLA urology, suggested the standard treatment of 6 weekly installations of BCG. I had two such treatments after bladder resections – the first time was tolerable, but did not get rid of the cancer – the second time it ruined my bladder to a point that I had to pee every half hour. For almost a year my bladder was chronically inflamed, as was my urethra, and my radius of activity was reduced to house and garden, everything else needed to be meticulously planned, so I knew there would be bathroom stops every half hour. To avoid this disability I have searched for an alternative to BCG, and below I will list what I found or know about. Sadly most of these suggestions are either not yet legal in the US, or they don't have randomized human studies available for a little more credibility.
But, one can dream! – And listing the impossible, might lead to a therapy that is possible within the legal space of evidence based medicine in America.
After I was diagnosed with bladder cancer in 2007 a Swiss MD, who was advising me, pointed me towards a website of a Dr. Thiel, who was the head of urology in the German town of Heilbronn.
http://www.iontophorese-tumortherapie.de/iontophorese.htm
Dr. Thiel retired years ago and is now 84, but I have years of email correspondence and several notebooks with details of his method. He does not claim to have a cure for bladder cancer, but his first question after the tumor was removed from my bladder: “What are they doing for the prophylaxis?” Then I did not know that dealing with bladder cancer means mainly to prevent a recurrence. His “iontophoretic tumor-therapy” is about prevention, assuming that visible tumors have been surgically removed. Back in 2007 “iontophoretic” was a new word for me, even though the mechanism of moving substances by applying an electric current was familiar to me.
Since then I found a glut of studies about the “iontophoretic” or “electromotive” administration of drugs. (They already have an abbreviation for it: EMDA for Electro Motive Drug Administration.)
I think Dr. Thiel was the first one who applied the iontophoretic administration to bladder cancer, because only an electric charge will push the medicine through an impermeable bladder-wall into the muscle, where the future tumors lurk. Dr. Thiel has been largely ignored, but in the meantime in Italy – Di Stasi et al and Rossi et al have used EMDA to force Mitomycin C into the bladder muscle. I quote:

“BCG treatments followed by a novel delivery system using electromotively delivered Mitomycin C are showing some of the most surprising recurrence-free response rates ever seen in superficial bladder cancer treatments.

Sequential BCG and electromotive mitomycin (EMDA) versus BCG alone:

disease-free interval 69 months vs. 21 months
recurrence rates: 41.9% vs 57.9
progression 9.3% vs 21.9%
overall mortality 21.5% vs 32.4%
disease-specific mortality 5.6% vs 16.2%
Side-effects were mainly localised to the bladder.1

Lead investigator SM Di Stasi reports that after ten years of using this technique, systemic side effects are not a problem.”(Sequential BCG and electromotive mitomycin versus BCG alone for high-risk superficial bladder cancer: a randomised controlled trial. * Di Stasi SM, * Giannantoni A, * Giurioli A, * Valenti M, * Zampa G, * Storti L, * Attisani F, * De Carolis A, * Capelli G, * Vespasiani G, * Stephen RL. Department of Surgery/Urology, Tor Vergata University, Rome, Italy. Lancet Oncol. 2006 Jan;7(1):43-51. PMID: 16389183 )

These numbers are very impressive, if they are correct! (The recurrence time tripled!)
In Italy the company “Physion” is selling the necessary equipment and they have a flashy catalog like they are advertising a spa. See pic.

http://media.wix.com/ugd/68d4a7_26c8257280eba6107858301f48c56bd9.pdf

So far EMDA seems to be legally approved in Italy, Austria, Sweden, Germany, and lately the United Kingdom.

But, back to Dr. Thiel:
The second part of his method consists of the cancer killing substance he advocates in the context of iontophoresis. It is a mixture of 50% DMSO and 50% Proflavine hydrochloride. Dr. Thiel claims that Proflavine selectively kills only cancer cells. It seems that membranes that become permeable by application of an electric current allow the Proflavine to be deeply pushed into the muscle where it will destroy the DNA of every cell in mitosis. According to Dr. Thiel this process only needs to be performed once for a successful prophylaxis!
I have researched Proflavine, because in the seventies it had the odium of being carcinogenic, but there are few studies about the cytotoxicity of proflavine and related compounds indicating that it's not carcinogenic in the dose requested.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987641/
As Dr. Thiel told me in his last email that his therapy requires Proflavine “in the lower milligrams” and is completely safe.
But he warned me about my selfish crusade to get a treatment that will cure at least this cancer. He predicted bruised egos, barking dogmas, and repeated collisions with the argument that is part of the history of medicine: “It doesn't work, because if it worked – somebody would be doing it!”
Hard to argue with that kind of sincerity. On the other hand, if that was how medicine works, we would still try to cure gonorrhea with colloid silver...and die from numerous bacterial infections...etc...
Dr. Thiel also doubted that the electromotive administration of Mitomycin C would do a good job penetrating the bladder wall, because the solvent is moving the Mitomycin C or BCG electro-motively along, but because the substance itself is not ionized, it does not allow an iontophoretic administration.
This, though, is essential for Dr. Thiel's treatment.
Lately it seems like the medical establishment is slowly catching up, but it probably is a little too slow for my cancer. I certainly do not expect to have Dr. Thiel's “iontophoretic tumor-therapy” offered to me in the near future. – Nevertheless, in Canada they offer the (above mentioned) BCG-EMDA/Mitomycin C treatment. It's legal, but obviously not paid for by the insurance...
It's $ 20 000 a pop!

So what can be done in America?

Mostly BCG! (It is still more promising than Mitomycin C, or Gemcitabine!)

Then there is Ofloxacin to deal with the adverse effects of BCG, but it also presents a set of undesirable side effects.
http://www.ncbi.nlm.nih.gov/pubmed/16890660

The combined thermo-chemotherapy for recurrent bladder cancer after bacillus Calmette-Guerin also seems to increase a positive outcome by a small percentage, depending on the individual case.

Conclusion: I know that all doctors are in agreement about the use of BCG ("the Gold-Standard"). I understand -- but having had very unpleasant experiences with BCG – I would either like to replace it with something equally potent, or find a way to reduce the BCG damage as much as possible. I also understand that the fact that BCG turned my bladder into raw meat, is not necessarily an unwanted side effect, but that that is the effect! When the bladder finally heals, it will hopefully be a reconstruction without the cancer. But I also remember my urologist's complete helplessness, in observing my mutilated bladder, with nothing to offer but "Hope". (And the snooty comment of my second opinion MD about me being a “bladder-cripple”. That was certainly true, but unless there is a treatment for this condition – it's not funny.)

Then, what else is there? Medical mushrooms, Zhuling or Reishi, are supposedly having the best results with bladder cancer. I have taken those, but one also needs to take a break once in a while, and I have to concede that my recurrence happened, when I took a break from the mushrooms, and at the same time fell into the doughnut hole with dronabinol. I could not afford the medicament without insurance.
On the subject of dronabinol: Cannabis oil has an almost mystical reputation as a cancer killer.
There is some very convincing evidence that cannabis oil works for all kinds of epilepsy, and there is an overwhelming amount of testimonials, of people who got “cured” from cancer.
However there are no studies to my knowledge that say anything about possible synergistic effects of BCG and Cannabis oil.
So by grasping for the stars, I hope I can find the best available treatment here and now, because I don't know how to live through another year of house arrest by my bladder, and a chronic urethritis that makes it impossible to get a job, and besides – it killed my social life, and has emptied my bank account.
...and that's all for now, soon we will talk, I just hope I have explained my situation and my hopes adequately.
Greetings Brummbaer Von Crenshaw

http://themindunleashed.org/2013/12/34-medical-studies-proving-cannabis-cures-cancer.html.

34 Medical Studies Proving Cannabis Cures Cancer!

The Claims:

Brain Cancer

http://www.nature.com/bjc/journal/v95/n2/abs/6603236a.html Guzman Pilot