Updated Post - Dealing With ANY Type of Cancer - WHAT TO DO? - December 3, 2014

I originally wrote this post more than five years ago.  In the time since, now more than six years cancer-free, I have come to some slightly different conclusions and priorities.  Even so the message is basically the same.

There are two things a cancer patient must do to survive:
1) Adopt the correct attitude
2) Adopt the correct "body chemistry"

Nothing else really matters.  All the treatments (TURBT, BCG, chemo, radiation, cystectomy or other surgeries, diet, exercise, supplements, etc.) are secondary to these two things.  Am I advising you to abandon the "standard of care" and tell your doctors to go to hell?  Absolutely not.  Attitude and body chemistry can be adjusted completely independent of the treatments you elect to undergo.

It is hard to say which of these two, attitude or chemistry, is more important.  The simple fact is this - without the right attitude, a cancer patient will not bother to change their body chemistry.  So the sequence is correct:

1) Adopt the correct attitude
2) Adopt the correct "body chemistry"


Step 1 - Let us begin with attitude.  How should someone, ANYONE, deal with a cancer diagnosis? Here is the correct attitude:


This is the first line of defense and the bottom line for ANY treatment regimen. If you choose to accept that your cancer is a death sentence, then ultimately it will be.

Don't get me wrong - I am not suggesting willpower for self-healing or other miracle working. This is much more practical.  Our culture has conditioned us to accept cancer as a death sentence.  Sometimes people survive, and that event is rare enough to be thought of as a miracle, or perhaps a statistical aberration.  It is VERY difficult to overcome this conditioning, and the more formal education one has, the more locked-in the conditioning.

People often tell me about cancers, usually a relative or close friend. Since I have cancer, and I have done some things that have been successful to date, they hope against hope that I can offer advice.  I generally suggest one or two simple things the cancer patient (not victim) could do in addition to the doctor's recommendations. People rarely pass on the suggestion, and even if they do, the cancer patients almost never try them. 

Many otherwise intelligent people abandon reason, almost as if they have operant conditioning, to accept that medical science is the only existing reaction for any recourse against cancer.  The hard truth of the matter is that the results for medical success are staggeringly low. Any logical person must therefore realize that the odds are stacked against them. Hopelessness is the default response.  And people are not willing to try anything unknown or "unscientific".  If this is your situation, you should face the reality of your attitude. By choosing not to try anything extra, you have simply chosen to die.

 Here are two examples:

 For many years at work I sat beside a brilliant man. It would be reasonable to describe him as a "rocket scientist," or perhaps more accurately a missile engineer. He is also a neighbor who lives 2 blocks away. He was diagnosed with pancreatic cancer that was found to have metastasized. His condition was grave. I went over and shared what I was doing. I even made a small batch of FOCC and showed his wife how easy it was to prepare. She and I both thought it tasted pretty good. He tasted it, made a face, spit it out, and said, "Yech! I will not eat that. It tastes like pancake batter!" I was quite taken aback - standing before him as living proof of success (so far) in battling cancer, a person he knows to be of some intelligence, offering a simple recommendation to follow - yet he chose to ignore my input. It later became clear that he had (at least subconsciously) chosen to die and was not going to be inconvenienced by any extra unpleasantness or hassles suggested by me. Certainly what the doctors are doing for him far more unpleasant than eating some "pancake batter." 

Example two: A friend of my mother's, who was the class valedictorian in her high school and had retired some years ago after a career as a brilliant theoretical physicist, reported that his wife had cancer and it was terminal. I hear this a lot (this was the second one that day), and it really makes me angry. Perhaps cancer will kill you, but to just accept that it will be so seems to me to be fundamentally and morally wrong. This fellow's scenario is typical. His wife has cancer of some type, it is a strong one (i.e. malignant), it has spread (i.e. metastasized), and there is really no hope. Of course they are getting the best doctors and choosing all the best treatments, but the odds are poor and really it is just a matter of time. 

Both of these men rejected my simple suggestions that would not have hurt anything to try, and could have helped.  The stated reason?  You have bladder cancer, but this is a different cancer, so nothing you say is applicable.  The real reason?  Both of them had accepted death as fait accompli, which is needless and dangerous, because, as it played out, both of the cancer patients became cancer victims and died a few months later.   

We have been trained (especially in America) to ONLY do what the doctor says and hope for the best. I know a lot of doctors and count some of them among my best and most faithful friends. They are some really smart people. I also know that they are human beings - trained in specialized skills to the exclusion of nearly all else. As such doctors are quite valuable resources for the things that they know about. We should pay attention to what doctors know and recommend, and we should work together with them to defeat the cancer. Let me repeat that for emphasis - WORK TO DEFEAT THE CANCER. This is step one. If you cannot take this step, then you have already decided to die from cancer. Anything you do after that is a simple matter of "just going through the motions."  

In addition to the "doctor knows best" conditioning, we also accept that there is nothing else that can be done. Just surrender to the doctors and hope/pray for the best. And I heartily recommend most things that doctors will suggest. In addition, more can be done, and these extra things lie outside the areas of your doctors' collective training. Such things should NOT be viewed as ALTERNATIVE therapies. They are simply ADDITIONAL therapies. This whole nomenclature of "alternative medicine" has been a tremendous disservice. It's wrong-headed from every angle. It's not medicine, and it's not an alternative. These are reasonable and proper actions that can be taken in addition to taking conventional medical actions. Together they form a multi-pronged attack on the cancer and provide the basis for a healthy and longer life. 

Attitude - the bottom line:  If you believe cancer will kill you, it almost certainly will.  If you believe that you can defeat the cancer, perhaps you can. 

 The goal is not to die FROM CANCER, which gives you the privilege to die from something else, hopefully much later in life. Perhaps something like a skydiving accident on your 100th birthday, having too much sex, or other happy pursuits.

This brings us to Step 2 is a combination of following the doctor's advice while educating yourself and your support team, and adding to that medical advice everything that you can to help your medical treatments to be successful. This last area is one where your doctor has had zero formal training, so he or she probably cannot help you, and most likely cannot even make an educated comment about any of it. It is far more likely that the doctor will discourage such treatments, feeling that they could reduce the already long odds.  There are a number of things to do, and I am doing many.  Over time I believe the number one thing anyone can do for ANY type of cancer is to address "body chemistry."  It is well known that cancer cells generate an acidic micro-environment which aids in their anaerobic metabolism and allows them to grow and expand at the margin.  The blood and other fluid chemistry of ALL cancer patients tends towards the acidic (lower pH) ranges.  Cancer causes acidity, and thrives in an acidic environment. How can we change the environment?

First a few words about body pH.  There is no such measure.  Doctors routinely monitor blood pH, which the body regulates using its natural buffering system to within a very narrow range in healthy people, between 7.35 and 7.45 - slightly alkaline.  (Neutral is 7.0 with values lower being acidic and higher being alkaline.)  Arterial (oxygen-rich) blood tends to range higher (7.41) while venous blood tends more toward 7.36.  For this reason most physicians scoff at the idea of alkalinity therapy to control or prevent cancer, because the bloodstream is already slightly alkaline, and it will not go above 7.45 - unless something else is seriously wrong with you.  This line is reasoning is correct, as far as it goes.  But as important as blood is, it comprises only about 10% of the total fluids in your body.

What is frequently and systematically overlooked by medical professionals is that the body is FULL of other fluids besides blood, and they are NOT as tightly buffered or regulated by natural systems.  Besides urine these include saliva, lymph, spinal fluid, interstitial fluid, bile, aqueous and vitreous humors (in your eyeballs), endolymph (in your inner ear), and most importantly and most abundantly - cytosol - the fluid within each cell.  Just to give you an idea, an average human male is about 60% water. If he weighs 190 pounds, then about 114 pounds are water.  Most humans have about 5 liters of blood.  A liter of water weighs about 2.2 pounds (and blood is a bit lighter than pure water). So only about 10-11 pounds of the 114 pounds of water is in your blood, which is pH controlled.  That means there are at least 100 pounds (over 45 liters) of other water-based fluids in your body, none of which are pH regulated like blood. The easiest one to measure pH on yourself is urine.

Measuring urine pH is potentially very helpful.  Again, most doctors will scoff at the idea, because urine naturally ranges widely in pH.  As it should.  But one must consider the function of urine.  Its purpose is for elimination of things your body doesn't need, extracted from the bloodstream by the kidneys.  While urine is mostly water, it can contain quite a few other things - over 3000 other things.  The curious can find the entire list here: Urine Metabolome  These things range from biological trash (broken cell pieces, enzymes, proteins, etc.) to salts, drugs, and environmental toxins.  If you have too much of something present nearly anywhere in your body, it should ultimately show up in your urine.  So if your urine is usually acid, that means that, somewhere in your body (perhaps many places) are running too acidic.  This condition is common in almost all cancer patients.  If we could implement something that influences the body so that urine becomes routinely neutral or alkaline, this would imply that the alkalinity capacity of other areas of your body is maxed out - thus creating an environment that is less hospitable or even toxic to cancer growth.  

I experimented for some weeks with diet, trying to modify food and drink intake to force urine to be less acid.  It was a total failure, and was reproduced by other readers of the blog.  You can see the details in this post. 

Even if you eat a kitchen sink full of broccoli and nothing else but distilled water daily, even this extreme diet cannot influence a very acidic body chemistry to any useful degree.  A more dramatic input is required.  Here is what I recommend: measure your urine pH for several days to determine if you have excess acidity.  If so add one level teaspoon (that's TEAspoon, 5g, and NOT tablespoon) of baking soda to 8-12 oz or more of water and stir to dissolve. 

Use a kitchen measure spoon, not a teaspoon from the flatware drawer.  Drink the baking soda mixture ON AN EMPTY STOMACH (3-4 hours or more after your last meal) and wait at least 20 minutes afterward before eating any food (or drinking anything with food value, such as sugary drinks, jello, or soup).  Continue to monitor your urine pH and adjust the timing and amount of baking soda so that you can keep your urine pH alkaline for 24 hours or more.  I have dialed in to one teaspoon, slightly heaped, almost every day - 7 days per week.  (Don't try to double up the next day if you skip a day - this will probably result in a bout of diarrhea!)  This is the simplest and easiest way to fight ANY type of cancer.

Be advised that the "alkalinity theory" of cancer treatment has been "debunked" in many places, most of which can be found with a web search.  These debunkers make two primary errors - first they assume that blood pH is what we are talking about (even though blood only represents 10% of the fluids in your body), and second they assume that diet is the only method to implement alkalinity.  Both assumptions are wrong.  You can see BOTH of these incorrect presumptions embedded and implicit in all the literature against this approach.  Here is a link to a pretty good one, and really he doesn't state that the approach won't work, merely that there is a lack of evidence to support a diet-based approach, and this is NOT a diet-based approach!

There are many other additional things you can do to fight cancer, in addition to what your doctors recommend, but having the right attitude and having the right body chemistry are the best place to start.  Changing both of these will not hurt anything, and will actually help to win the battle against any type of cancer.

News FLASH - There is a BCG Shortage! - August 22, 2014

UPDATE 30 January 2015 - BCG still not available in some areas.  Others report being able to get it or doctors have a supply on hand.  Will update when I hear supply is restored...

Original Post: I got a note today from Judy L. asking me if I had heard about a shortage of BCG, "I was supposed to get BCG today - 1st maintenance & I am being told there is no more...anywhere???"  To be sure, I was NOT aware of anything like that.  My excuse is probably reasonable, since I had my last round of maintenance treatments in March and I won't have my next one until 2016.  A few pokes around Google reveal that Judy is correct.  At the current time there IS a shortage of BCG for bladder cancer treatments.  There are only two manufacturers of BCG, and here is what they are saying as of now:

Sanofi Pasteur has TheraCys 81 mg vials for intravesical injection on back order and the company estimates a release date in second quarter of 2015.  (Sanofi Pasteur personal communications and website as of July 23, 2014.)

Merck has Tice BCG 50 mg vials for intravesical injection on back order and the company estimates a release date of October 2014. Orders must be placed with wholesaler and product is available by drop shipment only. (Merck personal communications as of August 7 and 15, 2014.)

There was a similar shortage in 2012, and things resumed to meet normal demand within 6 months.  Hopefully the same will happen now.  For those of you struggling with whether to BCG or not to BCG, that decision has been made for you in the short term.  More details at THIS LINK.

There may be supplies on the shelf in pharmacies around the world, but these will be isolated and quickly depleted.  This situation should not be seen as problematic, since BCG schedules are really not that time-dependent.  Your body really does not react differently when the intervals are 1 month or 3 months, or 6 months.  Hopefully urgent demand will be met by the end of this year, and all will be normal again early in 2015.  

In the meantime, enjoy your temporary break from BCG misery!

The Statistics of Chemotherapy - May 7, 2014

I shall apologize in advance for not having the time to do exhaustive research on statistics.  Even so, the one simple example I present is generally representative of the problem.  I shall NOT apologize for my anti-chemotherapy bias.  I fully understand that having cancer (of any type) is a scary situation.  Doctors must recommend the accepted "standard of care" for your cancer or risk losing their malpractice insurance.  This is a big deal for both doctor and patient.  The problem is that the standard of care may not be the best choice in most cases.  But the "statistics" do indicate that dangerous treatments (chemotherapy, radiation, etc.) are effective in fighting cancer.  Given that fact, plus the fear factor, plus the calm and clear recommendation of a competent physician, it is nearly impossible for a rational person to choose to defer or refuse a treatment such as chemotherapy.  One is therefore left simply with a few choices between specific chemotherapy drugs and even fewer choices about the hardware and facilities in which they might be administered and followed.

How could I suggest that avoiding a statistically effective treatment is a better choice?  Let us examine the simple mathematics behind such statistics.  A friend of mine has a father who has just undergone major surgery for lung cancer.  His father is progressing well, and now the choice is whether to follow with one or more courses of chemo.  In this case, using some round figures, the doctor advised that the standard of care is to have a course of chemotherapy.  He also suggested the statistical edge is not very large, so there is an option available to go without it.  He is using the patient's advanced age and very good health to justify the deviation from the norm.  When pressed, he said that the chance of remaining cancer free is good - around 60%.  With chemo, the chance increases to 68%.  Seems like a no-brainer to choose the chemo, right?  Perhaps not.  Lets examine the numbers.

First we will postulate two sample groups, each consisting of 100 cancer patients.  The first group chooses NOT to have chemo.  The available data suggest that approximately 40 of those patients will have some type of recurrence of cancer, and this recurrence may not be the same type of cancer that they had before.  Even so, some of those 40 may be able to battle the cancer with surgery or other types of treatments.  Those that are detected earlier have better odds.  Some will not survive.  We do not have data on what might happen to those 40, but not all of them will die from cancer.  The bottom line is that 60/100 will not have a recurrence, representing 60%

The second group of 100 chooses to have one or more courses of chemo.  It is widely known that chemotherapy drugs are dangerous toxins requiring special handling by the medical providers and causing severe negative side effects in the patients.  These side effects increase dramatically with each successive dosage.  These toxic effects are part and parcel of the chemotherapy regimen.  The drugs are toxic to cancer cells, hopefully toxic enough to kill or weaken any tumors or microscopic (and undetectable) cancers.  Being this toxic to cancer also means the drugs are toxic (to some degree) to regular cells and bodily organs as well.  Patients who are strong enough to survive a systematic poisoning may well live healthy and cancer free lives afterwards.  What is not counted are those patients who are NOT strong enough to survive the chemo.  These unfortunate folks are simply removed from the sample.   The scenario therefore plays out like this:  100 patients take chemo.  Approximately 11 of those die from complications related to dealing with the chemo toxins, leaving 89 remaining.  of those 89, approximately 60 do not experience a recurrence of cancer.  The bottom line is that 60/89 will not have recurrence, representing 68%.

Do you see the problem?  60 of the first group had no recurrence and 60 of the second group had no recurrence.  But the second group was reduced in size by chemo-related mortality, so the % of those who had no recurrence seems 8% higher.  Is having the chemo really a no-brainer now?  (As an aside, nobody ever officially dies from chemotherapy, and few ever officially die from cancer.  Then nature of cancer and chemo are that the entire living system becomes overwhelmed, and those who are not strong enough experience a system shutdown.  Therefore cause of death is simply listed as "heart failure."  While technically correct, the term is misleading.)

Are the doctors and drug companies lying about the efficacy of chemo and other dangerous treatments?  Not technically, but the reality is the efficacy is certainly overstated due to the omission of ancillary mortality.  In the case of my friends, the doctor cannot recommend avoiding chemo and retain his insurance, but he can justify some weasel words.   He is probably not doing so because he does not "believe in" chemo.  More likely he wants to avoid making an elderly patient's life needlessly more miserable.  A noble, if misguided, goal.

If I were the patient, I would choose to avoid the chemo and emphasize healthy diet, alkalinity, and exercise.  It makes for a much more pleasant existence, and increases your real odds of survival (with or without cancer recurrence).  Thankfully bladder cancer provides me with two circumstances that enable me to do analysis and make informed decisions.  One is the luxury of time.  You don't usually have to rush into things, as BC is a bit slower killer than many other types of cancer.  The other is the existence of BCG biotherapy, a much less dangerous standard of care.  A recommendation for chemo and/or radiation is much more rare, providing additional time for study and consideration.

The reality is this - many of you or your loved ones will be overwhelmed and choose to do chemotherapy.  In order to be helpful, I reference the following resources, provided to me by a group that specializes in support for those who have chemo.  For those that choose to go this way, I wish you all the best.  I also hope you make you choice with your eyes wide open.


Other resources:


BCG Maintenance Series 8 - Uncharted Territory - April 11, 2014

BCG Maintenance Series #8 is now complete.   This is good news - mostly because it's over, but also because there are only 3 more maintenance series to go.  This series was a bit of uncharted territory, as it was the first time with a 1.5 year gap.  It's also the first time I did BCG when recovering from a cold.  My last treatment was back in November of 2012.  Next ones, per Dr. Lamm's schedule, would be in 2016, 2018, and 2020, moving to full 2 year spacing.  Dr. Hopkins is unsure that further treatments are needed, but we have 2 years now to decide about continuing these maintenance treatments.  Feeling pretty abused today, so probably not a good day for such a decision.

One interesting thing to know was whether the BCG symptoms would be better, worse, or about the same with the bigger gap.  The data were mixed.  The first one was about the same, but seemed worse, probably because I had time to forget how horrible it was before.  The second one was also similar to 2012's second one, but perhaps a bit lighter.  I actually ate a small bowl of oatmeal the evening after, for the first time ever.  Usually I have no appetite for 24 hours or more.  The third one had more intense urinary symptoms than 2012, but far less other symptoms - no cramps, abdominal soreness, headache, malaise, etc.  And I ate some oatmeal again in the evening (high in carbs, but easy on the digestive system).  Tiredness and a bit of brain fog, but not nearly as bad as 2012.  That's probably a good trade.  As is normal, each successive treatment was worse, and the one yesterday is still making its presence felt in the bladder area.  Mario, to the right, is illustrating the post-BCG feeling quite well.  

With all the immune system boosting I have done, colds are quite rare for me.  I did have one last year in Argentina, and I had one again in April of this year.  My immune system has made the symptoms far less dire, but the duration, unfortunately, is still the same.  I was on about Day #8 of cold, well into recovery, when I had my first BCG.  I figured that already having some cold systems would make the BCG's job of fooling the immune system into action easier.  This was NOT the case.  The symptoms were magnified substantially by the BCG, and my cold recovery was set back by at least 3 days.  My wife pointed out that the system was stretched by trying to battle two conditions at once.  I am sure she is correct about this.

The detailed data from each treatment in the series is shown below.  As usual, click on the picture for a larger, readable version.  Symptom descriptions are about 3/10 on a gross-out scale.

Judgment Day, again! - March 17, 2014

St. Patrick's Day is Judgment Day for me.  It was supposed to be next week, but my doc decided to take some time off.  Best solution for scheduling scope and BCGs is to start a week early.  Wind is whipping up and loud this morning.  A storm is brewing and sky is dark early in the day.  I am not going to let the weather affect my attitude.  Instead I will do stretches and light exercise (my normal routine) and add some deep breathing exercises throughout the day.  Keeping busy with work and email and stuff helps me not to dwell on the upcoming cysto.  

I was able to focus for a couple of hours on getting my blood work results.  For this cysto, I had blood work (PSA mostly) and a full CT scan with and without contrast 10 days ago.  I went on my primary doctor's website and no results posted there.  He is a new doc for me, since my former one moved to California.  I called his office, four different numbers for the lab (which is independent from his office), and my urologist, asking them to call the lab.  Surprisingly I got a call back from the new doctor himself.  Since my appointment with him was still 3 weeks away, he had not reviewed the lab results or released them for me to see.  Apparently US procedure is that patients cannot see lab results (or anything else we have done) until AFTER a physician reviews them, goes over it with you, and approves them for release to you.  The new doc assured me he would pass the results on the the urologist.

The Urology appointment was set for 3PM.  No way this would be the time, but it would start the process.  Sure enough they were way behind, due to doubling up on patients and procedures to accommodate the doc's upcoming week off.  We got to the exam room by 3:30PM, and watched as the staff made preparations.  No video on the scope this time - disappointing, but I had been lucky for 3-4 in a row.  Doctor Hopkins came in about 3:50PM, and quickly verified the blood work and radiology reports were in their system.  He quickly reviewed the blood work, all normal, and the PSA of 0.6, which is good.   The radiology (CT scan) reported nothing new or of interest, also good.  Then the procedure.  We had made sure that a Xylocaine prep was present, and it was, and he used it.  This makes SO much difference.  Always do cystos with Xylocaine prep.  Not necessary for BCGs, but just makes a big mess.  Without the video, the procedure seemed to me to take a bit longer.   My wife actually thought it was faster.  In any case the result was good:

ALL CLEAR!  God is good, ALL the time!

This makes six years cancer-free, or close enough.  We are about 10 weeks short of 6 years, but I'm calling that six.  BCG to follow...

I am still employed (as opposed to being retired or laid off), and have good insurance.  Later this year (and next year) will be VERY different (and unknown at this point), so the doc and I decided to do a BCG maintenance series while the insurance is alive and in force.  This may be the last one.  Dr. Lamm is insistent that maintenance should continue at increasingly lower doses fo BCG (to improve patient tolerance for the treatments).  For me his schedule goes out to 2020.  Will figure out how far beyond 2014 I go with it later - probably next year.  This year's schedule is early in the day (9AM or so) on this coming Friday, after recovering from the scope.  Then same time again the following Thursday, then skip a week (the doc's time off) and again 2 weeks later on Thursday.  I would prefer Fridays, but the doc only works on alternate Fridays.  There is no alternate except the evil and completely incompetent Physician's Assistant, so that is NOT going to work.  So  the BCG process will take 4 weeks.  While it's nice to have a week off, I'd really rather have it over with sooner.  

I will provide the BCG details in the next post after a month or so, when they are complete.