BCG Rounds 2 & 3 and Other Updates - 5 November 2012


 It's been almost 3 weeks since my final BCG treatment of the last maintenance series, and I have been remiss in updating the blog with data and details.  I must emphasize that moderating my fluid intake and adding Gatorade as an electrolyte replacement has made an enormous difference in dealing with the side effects.  My "drink more, then drink more still" strategy definitely created more problems with electrolyte loss than it solved by flushing the bladder.  I target about 1.5 - 2 quarts of fluid (black tea at room temperature for me) per hour after the first two hours to continue until major symptoms cease - sometimes well after the 6 hour special handling period.  I intersperse mouthfuls of Gatorade beginning at about 3 hours after instillation, targeting about 2 quarts of Gatorade consumed across the time period.  I also sip a little more Gatorade during the night, and pound down at least half a quart upon arising the next day.   Net result is lower symptoms, lower duration, and less total discomfort.  I no longer need to plot a "misery index,"  as the net misery is now less than it has been for the past 2 years.


I found Round #2 to be about the same as last year, and, after making some adjustments in timing and amount of Gatorade, found Round #3 to be EASIER than last year.  Keep in mind that the reduced symptoms may be due to the short interval (5 days between #2 and #3), or due to my adjustments, or both.  In any case I am glad it's over and I am fully recovered just 2 weeks later - much sooner than ever before.  The detailed results are found in the charts below, not for the squeamish!  The corresponding tables from the previous round last year (and the year prior) may be found HERE.

BCG Round 2 of 3 - Click to Enlarge
BCG Round 3 of 3 - Click to Enlarge

During the final two treatments I was joking with Dr. Hopkins about skipping one.  Much to my surprise, he said that he was not fully convinced it was necessary to continue maintenance further.  I asked about high grade cases like mine, but he was not prepared to go into details.  Instead we scheduled an office visit in 6 months (April 2013) for him to review my case, updated PSA blood test, and the terrible DRE check of the prostate growth.  He has noted over the last 4 years that my prostate has been getting larger, but not too concerned because of low PSA.  I suppose at that time we will discuss the merits of continuing BCG maintenance.  Dr. Lamm is most insistent about doing maintenance BCG, but he proceeds at far smaller doses (down to 10% or 1% of a normal dose), while I have held steady at 33%.  Not sure where this will go, but I think I will proceed next October with another maintenance series, if for no better reason than my insurance will cover it, perhaps for the final time.  Dr. Hopkins also mentioned possibly doing only one or two rather than three doses.  Dr. Lamm demands 3 doses, although at the lower concentrations.  

I suppose we shall see on April 16.  Seems an appropriate day - after getting financially raped by the IRS on April 15, I will get physically molested by the doctor a day later.  It's amazing what we pay governments and doctors to do to us...

Click to Enlarge

BCG Maintenance Series 7 - First Round - 8 October 2012

It's been over a year since my last round of BCG - the longest gap to date.  I was happy for the time off and curious to see how my body would react.  Would my resistance be greater due to increased recovery time, or less (making symptoms worse) due to elapsed time allowing my body to drop BCG resistance?  There was good news and bad news here.  The bad news is that the symptoms were worse than Round 1 a year ago.  The good news is that my new protocol of adding electrolytes made the whole ordeal shorter and much easier to bear.

The appointment was at 8:30, and we were there early.  The doctor came in right on time (about 8:40), but the staff had not finished the urinalysis or BCG prep, so he went off somewhere and my BCG (1/3 dose) was not administered until about 9AM.  The doc was back from his trip hiking the Andes and Macchu Picchu.  He reported that the scenery was amazing, the vistas breathtaking, and no pictures could capture it.  During the day he handled the altitude well (more than 15,000 feet or approx 5,000 meters), but at night he was not able to sleep because of hypoxia and waking up gasping for breath.  Having spent nearly a week above 12,000 feet (4,000m) without sleep, he looked quite haggard and worse for the wear.  He worked slowly and methodically (quite unusual) and the administration procedure was easy and hassle-free.
 
On the way back home I hydrated slowly and was able to hold for the full two hour period.  Side effects began earlier and were more severe, but I felt generally better due to the addition of Gatorade sports drinks to supplement my normal hydration fluid - black tea at room temperature.  My wife was able to find Gatorade G2 with half the sugar - but still plenty of it.  I sipped it slowly throughout the day, and continued the next morning.  But being up every 60-90 minutes all night to urinate had significantly dehydrated me, so I would have been better off to pound a liter of the stuff first thing the next morning.  Lesson learned!  Next round will be on Thursday, only 6 days between #1 and #2.


While the urinary symptoms were worse than last year, the time duration and misery index was much less thanks to the Gatorade.  Last year I definitely over-hydrated and created severe electrolyte loss.  You can find last year's data in this post.  This year's round 1 table appears below.  Click to enlarge and view the details, unless you are squeamish - in which case you are done reading now!



Bladder Cancer Humor? - October 2, 2012

Bladder Cancer, as we all know, is not a laughing matter. But one must admit that the things we do to detect and cure it are completely ridiculous and defy description.  Professional comedian Mike Birbiglia had Bladder Cancer when he was in his late teens, and he retells the story with some probable embellishments here.  Props to Steven S. in Tennessee who found this.  Be advised there is no moving video, only a picture of his comedy album.  So enjoy the audio.



For the record, I never got any damn muffins!  What's up with that?

Judgment Day #11 on 9/11 - September 11, 2012

Probably most of you are remembering today (9/11) for another significant reason.  For me, it seemed an appropriate date to schedule my last cystoscopy for 2012.  I had a week's vacation and a weekend home to relax and prepare physically and mentally.  The 9AM appointment came all too soon.  The doctor was cheerful and chipper, came in and talked about adopting a new son from China last winter. He had originally planned to do it this month, but when they call, you have to go.  The boy has brought the family great joy, despite some medical issues.  So his vacation this year is quite ambitious - a hike over the Andes mountains in Peru to arrive in Machu Picchu.  He and his wife plan to spend several days and nights above 12,000 feet elevation, HIKING as high as 16,000 feet.  I cannot even imagine it.  


The procedure went quickly and the wonderful ALL CLEAR was welcome.  The doctor confirmed that we would do 3 BCG treatments in October, and then no scope (or PSA test) until September 2013!  This clear report now marks 52 months cancer-free, nearly 4.5 years.  Keep in mind that terms like "remission" don't apply to bladder cancer for at least 10 years, so not quite halfway there yet!

This makes for a happy day, and we will start making big plans for vacation, visiting friends, travel, and whatnot right away!  No more stunned period, waiting for the good news to sink in.  As soon as I feel better, perhaps I will try a happy dance.

Some details of the procedure follow, so those with weak constitutions may want to stop reading here...




There was some discomfort with the procedure this time, despite being able to use the very nice Storz video scope setup for the 3rd time in a row.  The doc started quickly, but I was ready - fully relaxed from deep breathing and hypnosis techniques.  No Xylocaine prep, and little if any lube used this time.  Frankly the whole ordeal (maybe 30 seconds) hurt like hell.  Even pointing my toes up and down alternately and focusing attention on the screen did not help.  I was able to stay relaxed and breathe through it.  Unsurprisingly my first urination at home (not counting voiding the saline solution at the office) showed a slight trace of blood (microhematuria), although the urine was nicely alkaline in pH.  It had been alkaline all of yesterday, so I think the stress was effectively managed.  For future scopes I plan to ask for the Xylocaine prep - even though it is messy, it helps a lot.  Not necessary for BCGs though!

Postmortem:  VERY severe symptoms (both razor blades and fire) began about 3 hours after the scope and remained with full pain levels unabated for 48 hours.  Began to ease a bit after that.

Final Postmortem:  Now pretty much back to normal FOUR full 24-hour days after the scope.  (still minor discomforts on Friday evening, at 3.5 days)


Motocyclene Therapy - September 10, 2012

I hang out with some interesting people on the internet and in real life.  One truly unique set is a group of motorcycle riders who like to ride long distances in the countryside, usually at very quick speeds.  In the universe of motorcycle riders, this sub-group is known as "Sport - Touring."  Few, if any, ride the infamous Harley-Davidsons, as that particular tool and technology is quite poorly suited to the mission. Most ride Honda, BMW, Suzuki, Yamaha, and Kawasaki motorcycles of various vintages and styles, matching personal preferences with budget, image, and other factors.  My group mostly started with Honda ST1100 bikes, and many have moved on to the newer technology of the Honda ST1300.  Others have migrated to other brands - some have had many choices, and others are still loyal to their first mount.  When people ask me what kind of bike I have, the answer "Honda ST1300" is generally uninformative, so then I tell them it's a cross between a Gold Wing (road sofa) and a crotch-rocket (bullet bike).  That description, plus a picture carried in my wallet, tends to convey the idea.

Several years ago one particular biker got carried away with typing an email update and misspelled the word "motorcycling" as "motorcyclene."  One cannot even blame the spell-checker for that mistake!  Even so, the word had traction, and has become a common term to describe the endorphin effect that occurs when riding for a while.  Others call it "clearing the cobwebs out of the brain" or other metaphors, but the term Motorcyclene Therapy is one that both resonates and works for me.

To help prepare for Judgment Day and otherwise restore balance to life, last week we rode about 1,500 miles, which is a pretty short trip for us.  They say that a picture is worth a thousand words.  If so, several thousand words follow:  (Click on any photo for a larger version)





















More on Urine Testing - September 10, 2012

I have been back from my motorcycle vacation for a couple of days.  Great preparation for tomorrow's judgment day - riding with my wife and many great friends through the Colorado Rocky Mountains.  Great friends, scenery, food, and drink.  Extremely relaxing.  Began researching the urine tests and what passes for "normal" values for all 10 of the indicators.  If any of you are naturally curious about more than pH and blood, the following table should be quite useful:


More on Urine pH, Acidity, Alkilinity and Bladder Health - September 1, 2012

After publishing my last post, I received several emails from around the world.  Many are eager to begin monitoring their urine, and Sebastian in Argentina has noted microhematuria (microscopic blood in his urine) as well as acidic conditions.  He will be sending me his data to tabulate along with my own.  And Julie T. in Illinois had a story quite similar to John M's.  Her report in her own words follows:


From what I have read, cancer cells are anaerobic. They thrive in situations where there is little oxygen and lots of acid. Highly acidic food and stress are common culprits for causing a body to become acidic. The acidity in your blood has very little wiggle room, but the acidity level in your urine and saliva can vary greatly. I started testing my urine with the test strips and found that I was off the charts acidic (7 is neutral). I was at a 5.5 or below almost always. I used my husband as a control and made him test his urine also. We eat most of the same foods, and he eats a lot more unhealthy "junk food" (crap) than I do. His urine always showed a neutral to mildly alkaline reading (7-7.5) without doing a thing to control it. I started to drink baking soda & water every night before I went to bed (1 teaspoon to about 10 oz of water, equivalent to approx 1 gram per 300ml). I figured it would neutralize my urine and stay in my bladder overnight. I became somewhat obsessed with testing every time I urinated. It was amazing how the acidity level would fluctuate so dramatically during the day! I also started to notice that I could sense a "gritty" feeling in my bladder - the best way to describe it was like sand. If I would test when I had that feeling, I would find that my urine was very acidic. If I then drank the baking soda & water, the feeling would go away within 30 minutes.
I also started paying attention to diet and looked for trigger foods - things that I would eat that would correlate with acidic urine. Wine is something I love dearly, and wine would test acidic for me every time. I started drinking a baking soda chaser after each glass of wine to offset the "gritty" feeling and acidic condition. Foods that are typically acidic seemed to be the triggers, for example: cantaloupe. Sometimes I would need to drink 2 or 3 glasses of baking soda & water per day of to keep the urine pH level up to a 7 or higher. I have now learned to know what my acidic food triggers are, and if I am going to have them, I need to counteract their acidic effect with baking soda & water. I also drink 1 glass of baking soda & water at night, and I have become very attuned to feelings in my body. 

I also read the book Eat Right 4 Your Type - very insightful! I have Type O blood, and the book reports that people with type O blood tend to be more acidic then others. The book also pointed out foods that would react negatively with the antigens in the blood. Another interesting point was that people with O blood tend to not be overly affected by cancer. 


Like John M. I feel my spiritual life has been strengthened more than I ever thought possible. I have become very prayerful every day and can actually feel the love, support, and prayers other send my way. I know that God is watching out for me and giving me the strength I need to live every day. 


I have started seeing both Naturopath and Homeopathic doctors. Both work in tandem with one another. They have prescribed shots of mistletoe twice a week in my stomach, and I think they are working. The shots are the only thing that made my headaches from the BCG go away and eliminate my fever after a month. I have also started brewing and drinking a fermented drink called kombucha. It is supposed to put your body back in balance, and I have to say that I feel FANTASTIC! I have always been active, but never before like I am now. I also gave up coffee a few months ago and don't even miss it - or need it to get out of bed. 

I have three boys ages 14 ,11, & 5 - plus I work full time as a professor, so I need all the extra help and energy I can get! I finally feel like things are starting to get back in balance. Hopefully my November cysto will demonstrate that my bladder agrees!

I hope that you find Julie's story as compelling as I do, and that you will consider measuring and controlling your urine pH along with me.

Miscellaneous Updates, and New Data to Collect! - August 29, 2012


DIET and EXERCISE

Just took a look at my blog posts, and life is good.  So good, in fact, that I am not posting to the blog!  I see that I have 135 total posts (not counting this one) and only FOUR of them have been in 2012.  Not expecting the end of the world or studying Mayan history, but really just living life like a person that does not have cancer.  It's really weird.  I am still doing the dietary thing, avoiding potential carcinogens like pork and shellfish altogether, and limiting other things (stuff with preservatives, etc.) to one day a week.  The diet is now intended more for weight loss and health building than cancer avoidance.  I posted earlier that I lost 40 pounds or so in 2011.  Not so much for 2012 - no loss at all on the balance - a few pounds gained, a few pounds lost, but stable around 220 pounds.  Does this mean the Slow-Carb diet is a failure?  I don't think so.  For one, I have not gained the weight from last year back.  And perhaps the most important factor is the TOTAL absence of the much-hated exercise.  Not because it is hated, but because a chronic lower-back injury resurfaced in April and has been really exacerbated by the minimalist Slow-Carb Fat-Loss exercises and stretches.  It used to be that a chiropractic adjustment would fix it for a month or three, but this progressed to the point where it would not "fix" at all, or last less than 24 hours.  A friend of mine, Frank R., has been bugging me for years to abandon chiropractic and go to his Physical Therapist. I was finally desperate enough to do it.  Unlike others I have experienced, this guy did not prescribe meds, bend joints, or cause other painful effects.  Rather he showed exactly what was wrong, how to "fix" it myself, and trained me to do a bunch of exercises to strengthen the back and core muscles to hold the correct position in place.  This process took almost three months of training and follow-up visits.  Bottom line - I feel better than I have in years, can recognize when things are even slightly off, fix the problem instantly, and continue to work the back and core muscles.  The PT even told me I can resume all the Slow-Carb Fat-Loss exercises as I wish about 4 weeks ago.  But work travel, vacation travel, upcoming cysto (on 9/11 - good day for a judgment day), and BCG will mess up the schedule, so I have resolved to work hard on the PT exercises and add in the Fat-Loss stuff after my October ordeal with BCG is complete - just in time for the Thanksgiving and Christmas Holiday season!


HOMEWORK

An interesting side note, reshuffling of buildings and offices at work has left me with a suboptimal place to work, so my boss authorized me to begin working from home full time.  This change necessitated some new expenses for better home office furniture and connectivity, but the end result is really nice.  I would think my productivity is nearly doubled during busy times!  When I do go into the office for occasional meetings (not really mandatory, but good to let people not forget about me), everyone says how much better and happier I look.  They all say that the working from home must really agree with me.  It does, but I think the real reason for my improved posture and attitude is the result of the PT exercises and the absence of dull, nagging lower-back pain.  I had learned to tune it out unless it got really sharp and severe, but with even the dull pain now gone, life really looks much better again!



FRATERNITY UPDATES
 
 In addition to all of that, several of you have contacted me in the past months with updates and new information.  The best news is that our little BC "fraternity" continues to have clean cystoscopy reports and maintains a cancer-free state! The list includes Steven S. in Tennessee, Sebastian in Argentina, Julie T. from Illinois, John M. from Ohio, David F. in England, Ben F. in Louisiana, Roy B. in Alabama, and a few others who prefer to remain nameless.  At least three of this list had "false alarms" of things that looked unusual but turned out not to be cancer recurrence.  This is really an IMPRESSIVE list.  All of them have made some degree of dietary change, but probably the most fascinating story belongs to John M. in Ohio.  I had a couple of lengthy phone calls with him - he prefers that mode to email.  


JOHN M.'s AMAZING STORY!  

He was diagnosed with three tumors in Fall of 2011, and had TURBT and BCG, then had 4 new ones only a few months later in December, removed for Christmas via another TURBT.  Both sets of tumors were analyzed and found to be very aggressive and high grade cancer.  Per the US standard of care his oncologist at the Cleveland Clinic advised him to have a full Radical Cystectomy.  I suspect most of you reading this have considered this possibility and, like me, consider this to be a dire, last-resort only - to be avoided at all costs.  John took this feeling to a whole new level.  He did a lot of research (including this blog), and began testing his urine for microscopic blood using laboratory test strips at home.  He began noticing correlation between certain food consumption and trace, microscopic blood in the urine.  He also began to note a correlation between foods and the acidity/alkalinity (pH) of his urine - conveniently measured with the same test strips. Further self-research and experimentation also showed a strong correlation between stress levels and acidic pH and presence of microscopic blood.  This knowledge plus the threat of RC in his future propelled John into high gear.  He immediately stopped eating ALL animal protein (including fish and eggs) and ALL sources of sugar.  He went to an organic vegetarian diet and added alkalizing agents (e.g. baking soda and lemon juice).  He also took steps to reduce stress in his life - removing factors he could control (e.g. driving), and gradually letting go of other things.  I asked him specifically how he accomplished the latter.  A devout Catholic, he prayed for relief and yielded his burdens to a Higher Power.  He monitored his urine for pH and blood every time he urinated, taking corrective action on stress or diet any time the indicators indicated blood or acidity.  

Four months later, in April, 2012, John went in for another cystoscopy.  No new cancer, but one scar and three red spots, perhaps residual from TURBT and BCG, or perhaps new.  The oncologist wanted to do biopsies, but John declined.  He did agree to a follow-up cysto in August, 2012.  That cysto showed ABSOLUTELY NOTHING.  No spots, no scar - nothing at all.  John's bladder returned to it's original, pristine state.  From his experience and research, John has concluded several things:

1) Maintaining an alkaline pH in the urine (above 7.0) will allow the body to effectively kill off existing cancer
2) Diet is the key to maintaining alkaline pH, supplemented by baking soda or lemon juice as needed
3) Once the cancer is gone, one can safely consume sugar and other things, in limited quantities
4) Food coloring, artificial additives, and preservatives should be avoided at all times


He still monitors his urine blood and pH levels daily, but no longer every time.  He also indulges himself in high-acid foods from time to time (citrus, tomatoes, meat, etc.)  He likens the situation to a canker sore in the mouth - it will heal quickly without exposure to acids.  When healed, one can consume the acidic foods without too much concern - unless another episode occurs.  His strict, organic, green-vegetable diet (including juicing) was only needed until the cancer was gone.  He is now more careful about diet, but not obsessive about it.  Eliminating stress is still a good practice - stress is very acidic to one's biochemistry and negative to both physical and mental health.

Read about John's story in his own words in his fairly brief blog here: 



Unlike me, John did not keep meticulous records of his research and test results.  So that door is open for me.  I have ordered 200 test strips and will begin some experimentation on myself for correlations to foods and stress.  I note that these strips test both pH and blood, but also have 8 other indicators.  So I plan to do some research on some of the other tests to see if they may provide useful data.  Stay tuned for a few months as I collect the data.  If any of you would like to join me in this experimentation, send me your data and I will post it on the blog for all to see and share.

These SG-10 urine test strips are made by Siemens, Bayer, and Roche, and may be found from multiple sources on Amazon, and generally less expensive sources on eBay. 

ANOTHER TEST TO TRY
 
I was contacted recently by a drug company representative. They are marketing a urine test for a specific protein (NMP22) that is an indicator (sometimes) for bladder tumors. These test modules are more complex than the test strips above (which test for total protein, not specific ones), and require 30-50 min to analyze the sample drops of urine.  They are pretty reasonably priced at $15 each, sold in packs of 10, and are available by prescription only in the US.  I asked him about availability in other countries, but he did not answer that question.  Because they are prescription only, the routine is to learn about them and "ask your doctor," just like the other cheesy drug commercials on TV.  I may well ask my doctor about them, as I will be going to annual cystos after this next one.  If any of you are interested, the patient information (including a pre-filled out prescription for your doctor to sign) may be found at: 


Let me know if you try them and what results you experience!

Not Everything That Happens is Cancer - 9 June 2012

I have to thank a couple of blog-readers for some inspiration for new posts.  First goes  to Ben, the Mobile Biohazard Man in Louisiana, who shared a recent diagnostic ordeal that reminds me of Sebastian's false alarm reported a couple of posts ago, way back in March of this year!  Another goes to new reader and "fraternity member" Steven, who correctly spells his first name the same way I do.  His prompting will lead to another new post in a week or two.


Back to Ben in Louisiana.  As part of his attention to general health, he went to his primary doctor (not the urologist) for a routine check up at the end of April.  Blood work was taken in advance to find that his PSA level had continued to elevate from 1.2 to 3.5 and now up to 5.4.  While this is not unusual for BCG patients, the doctor was thorough and performed a routine and quite unpleasant procedure used for men called DRE.  (As a side note, my PSA has remained low at 0.6 recently, and my DREs had all been negative except to note normal growth in the prostate.) 

Unfortunately for Ben, and the doctor detected a "small lump" on the prostate.  At this point the natural reaction is panic - there may be prostate cancer in addition to the bladder cancer.  Both Ben and his wife were very concerned.  In early May, Ben visited his urologist for a follow-up, and the second doctor confirmed the presence of the lump - estimated at 8mm in size (same as Sebastian's bladder polyp).  The specialist felt that his preliminary opinion was a clogged duct, small cyst, or perhaps a granuloma (which is quite unusual and not as serious as it sounds). 


The only way to be sure was to conduct a prostate biopsy, another quite unpleasant procedure - mostly due to the sounds one hears.  Ben's took place in late May, using the common "rear entry" method.  Here is how Ben described it in his own words:
Now for all those that have not had prostate biopsy, just let me say that is an eye opening and memorable experience. He punched 14 holes thru wall of colon and into prostate under local. Don’t let me exaggerate, really not much pain, but quite unnerving, the needle gun makes a loud click with ever shot.
Three days (and sleepless nights) later, the pathology results came in - NO MALIGNANCY, but inflammation, fibrosis, and granuloma, which in this case was a cluster of cells (probably BCG) that had settled in the prostate and became encapsulated by the body for protection - thus forming the small lump the doctors felt.  There is no treatment necessary as the body will slowly absorb and deconstruct the granuloma over time in its natural healing process.  So all is well that ends well!

Subsequent to the original posting, I learned that both Ben in Alabama and new reader Steven have had similar experiences, so this may not be so uncommon after all...


Ben's advice is, "Don't Panic!"  Lots of things cause PSA to rise, including BCG, and not all prostate lumps are cancerous.


The Ides of March Judgment Day #10 - March 15, 2012

Julius Caesar's bloody assassination on March 15, 44 B.C., forever marked March 15, or the Ides of March, as a day of infamy. And the character of the Soothsayer created by William Shakespeare for his play Julius Caesar has given English-speakers a famous line:
CAESAR Who is it in the press that calls on me? I hear a tongue, shriller than all the music, Cry 'Caesar!' Speak; Caesar is turn'd to hear.  
Soothsayer Beware the ides of March. 
CAESAR What man is that?  
BRUTUS A soothsayer bids you beware the ides of March.  
CAESAR Set him before me; let me see his face.  
CASSIUS Fellow, come from the throng; look upon Caesar.  
CAESAR What say'st thou to me now? speak once again.  
Soothsayer Beware the ides of March.  
CAESAR He is a dreamer; let us leave him: pass.



While Shakespeare's Caesar was ill-advised to ignore the Soothsayer's advice, I fared well today.  Although the day retains a certain air of destiny that seemed appropriate when I scheduled my cystoscopy six months ago.  Flirting with danger?  Hardly. The news was all good - ALL CLEAR now marking over 45 months cancer free! 


Many of you have sent notes of encouragement, well-wishes, reports of prayers and  other helpful things, and I thank you all for them.  For some reason I had less trepidation this time than in the past - perhaps the success of diet and improvement in various blood test variables has re-enforced my belief that I am doing all I can to stay cancer free.  That coupled with the ever-present and simple fact that GOD IS GOOD, ALL THE TIME!


Most of our small "fraternity" here have had similarly good results, so the pressure was on for me to continue the trend.  I was happy to continue it.  We arrived ten minutes before the appointed 9AM time-frame, did the paperwork, urine sample, etc. and were shown to the exam room.  I was pleased to see the Storz scope stationed there, a much nicer instrument that had produced no side effects from the exam last time.   I had taken the liberty to call in advance to try to negotiate, persuade, incentivize, bribe, or whatever to make sure this happened.  I even metaphorically twisted the arm of Gloria, our favorite medical assistant, to make it happen.  On all fronts I was assured of two things:


1) All three scopes (optical, low-def video, and high-def video) are exactly the same diameter, and
2) The assignment of scopes to exam rooms is purely random and not subject to my influence


So call it coincidence, karma, destiny, fate, or providence - whatever.  The scope was there.  Only one thing differed.  Last time they had given me a Lidocaine prep, an unpleasant extra that I declined for BCGs in the past.  This time there was none.  I decided to go with the setup as presented to serve as a new data point for all.  Was it the scope or the Lidocaine that made the difference last time.  While there was some discomfort, it was still less than either of the other two scopes, and certainly less than experienced initially when the Lidocaine prep is applied.  So I do prefer to do without the prep, and the Storz scope is still better for me than the other two.  Could it all be in my mind, or a more flexible probe, or some other factor?  All I can rule out was the video quality, since I could hardly see the monitor at all due to its strange angle today.


The Doctor was pleasant, quick, and efficient and the entire exam from when he entered the room until he left was less than 5 minutes.  Good news on all fronts.  Return as planned in September for another scope to be followed by 3 more BCGs, at which point the scope inspections move to annually.


Having the good news assimilated, and after cleanup and re-dressing, we scheduled the September events and received a prophylactic dosage of antibiotic (Cipro) to ward off anything incidentally induced by the procedure. The next order of business was to celebrate the good news.  With somewhat less trepidation, there was less stress-relief exhaustion and perhaps a tad of euphoria.  My wife suggested an Irish jig, but I need to lose a few more pounds before subjecting the world to that!  And we were hungry - as I chose to skip breakfast (my usual practice) to avoid giving my stomach any reason for upset prior to or during the procedure.  Temptation was to go have a celebratory breakfast, but my diet dictates strict limits on what is eaten until Saturday.  So we had a high protein breakfast and returned home for a day of March Madness basketball.  We will have some cookies and other goodies plus Italian food for dinner on Saturday. Maybe even some green beer, corned beef, and cabbage.  It will certainly be a happy St. Patrick's Day here.  As for today, red wine is allowed, so we indulged in a bottle of EIEIO Pinot Noir.  It was fantastic!

Bladder Cancer WAY South of the Equator! - March 3, 2012

In a few previous posts I have mentioned "El Caligrafo" which may be translated "The Calligrapher," or perhaps more accurately "The Scribbler."  Despite the appearances he is not actually Batman's latest Latin nemesis, but rather a really great fellow named Sebastián B. from Argentina. His nickname comes from his hobby as an amateur writer of fiction.  He and I have a lot in common: married (over 20 years), no children, loves dogs, loves travel, works in engineering (civil), has a great sense of humor, and bladder cancer.  His wife, Marisa, is also an engineer (systems).  He also used to refer to himself as Oldman, but at only 45 he is a bit younger than me, so there will be no further reference to that!


Sebastián and Marisa live in Rosario, the second largest city in Argentina with over a million population, located about 300km (188 miles) from the capital city of Buenos Aires.  He sent me a few official photos of the city:







They are in the middle of summer now in the Southern Hemisphere, and the family has just completed a nice Carnival holiday at nearby Victoria.  Even their dog, Chiche was able to go with them.  According to Sebastián, Chiche (pictured below) is "not precisely a Rottweiler," and he loves to ride in the car!




The protocol for bladder cancer treatment in Argentina is quite similar to the US standard of care.  Diagnosis with urine test, ultrasound, x-ray, and cystoscopy, then TURBT surgery (one or more), and then BCG treatments with cystoscopy inspection for life.  One difference is that routine bladder biopsies are performed after BCG - 15 samples!  Sebastián initially contacted me with a few suggestions.  He has independently adopted a similar attitude to mine regarding diet and lifestyle changes.  Sebastian's diet is covered in this post.  Another suggestion concerned relaxation before scopes and other procedures.  Sebastián has found daily, low-dose (75mg) pregabalin (sold in the US under the brand name Lyrica) to be quite effective in taking the "edge" off pre-procedure anxiety.  He has found no side-effects, drowsiness, or difficulty concentrating,and he offers this following item from Medscape Medical News as support:


Pregabalin Safe, Effective in Generalized Anxiety Disorder 
Laurie Barclay, MD March 7, 2003

Pregabalin was safe and effective in treating generalized anxiety disorder, according to the results of a placebo-controlled trial reported in the March issue of the American Journal of Psychiatry. This drug was almost as effective as benzodiazepines without withdrawal symptoms, making it a potentially good alternative. It may also be beneficial in a number of other neuropsychiatric disorders. "Recent attempts to develop nonbenzodiazepine anxiolytic agents with novel mechanisms have been mostly unsuccessful," write Atul C. Pande, MD, FRCPC, from Pfizer Global Research and Development at Ann Arbor Laboratories in Michigan, and colleagues. "One novel agent, pregabalin, a structural analogue of gamma-aminobutyric acid (GABA), is currently in development as an anxiolytic on the basis of its profile of pharmacologic activity in animal behavioral models." In this double-blind study, 276 patients meeting DSM-IV criteria for generalized anxiety disorder were randomized to treatment with pregabalin (150 mg/day or 600 mg/day), lorazepam (6 mg/day), or placebo. Some subjects had mild depressive symptoms, but patients with other comorbid psychiatric disorders were excluded. After a one-week placebo lead-in, subjects received four weeks of treatment followed by a one-week dose taper. Mean decreases in total Hamilton anxiety scale score from baseline to endpoint for each group were –9.2 for pregabalin 150 mg/day, –10.3 for pregabalin 600 mg/day, and –12.0 for lorazepam, which were significantly greater than –6.8 for placebo. Pregabalin's effect on the total Hamilton anxiety scale score began as early as week 1. Compared with the other groups, fewer patients in the lorazepam group completed the trial (59% vs. 73% for placebo, 71% for 600 mg/day pregabalin, and 90% for 150 mg/day pregabalin.) Somnolence and dizziness were the most frequent adverse events reported for pregabalin and lorazepam. No patients receiving pregabalin reported serious adverse events or had evidence of withdrawal syndrome. "These results indicate that pregabalin is an effective, rapidly acting, and safe treatment for generalized anxiety disorder," the authors write. "In short-term treatment, pregabalin does not appear to have the withdrawal symptoms associated with the benzodiazepines.... Pregabalin is also currently under study for treatment of seizure disorders and neuropathic pain [and it] may have activity in several nervous system disorders other than anxiety." 
Am J Psych. 2003;2160:533-540 Reviewed by Gary D. Vogin, MD 

 I have not tried it, as I tend to be on-edge pretty much all the time, so for me the pre-procedure times are simply a matter of degree.  Ever the creative optimist, Sebastián suggests a slightly more complex alternative which I can wholeheartedly endorse, involving a tropical island, beach, good weather, and perhaps some ethanol.  The photo below shows Sebastián demonstrating this alternate relaxation technique:



Sebastián has also had some benefit from adding ultrasound checks between cystoscopy, just to add peace of mind.  I shared that ultrasound had not detected anything in my case, but perhaps it cannot hurt to check.  On the other hand, about 3 months after cystoscopy and biopsies came back all clear, Sebastián went in for a precautionary ultrasound that detected a large (8mm) spherical intrusion into the bladder.  Look at the center right side of each photo below - this thing looks huge!


Rather than adding peace of mind, the effect was opposite.  Can you imagine the growth rate of something that size forming after only 3 months?   The doctors told him it could be a "blister," a harmless byproduct of the biopsies, or it could be a tumor.  A TURBT was scheduled for the day after Christmas last year.  On January 3 he got the good news.  The "tumor" was an inflammation of the bladder wall caused by the previous TUR surgery and biopsy.  Supposedly a rare phenomenon, it is completely benign.  God is indeed good, ALL THE TIME.  Sebastián wanted me to post the details here so that others may know that not everything detected after surgery is a problem.


Other advice from Sebastián concerns post-TURBT recovery.  Super-hydration (4+ litres/day), avoid spicy foods or other dietary irritants (citrus and other things high in vitamin C), and chamomile tea.


I want to thank Sebastián and Marisa for sharing his information with us all, and I hope that he can remain cancer-free.  Perhaps we can meet on some tropical island some time to practice our relaxation techniques!