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.


Bladder Cancer, Alkalinity & Secondary Issues/Considerations - November 6, 2013

See below for some February, 2014, Updates in blue text!

Yes, it has been a while since the last post!  It is truly amazing how quickly the time has passed.  The good news is that I have been busy living life, exploring the world, looking forward to some sort of working retirement (the only type available to US citizens these days), and planning the future.  Over the past months many have contacted me to report clean bills of health in bladder cancer screening procedures, generally cystoscopies, and the results are summarized in the sidebar to the left.  Others have reported complications or ancillary issues, and those are the topics for today's post. 

First of all we have John B. in Minnestota reporting that his last PSA jumped from 0.5 to 6.1.  Anything over 4.0 is considered high.  Further investigations discovered a lump in his prostate, and biopsies (13 samples) of this lump proved to be negative - ALL CLEAR.  Turns out the lump and elevated PSA are something called  Granulomatous Prostatitis, and may have been caused by the BCG treatments.  John tells me that the doctors expect the lump to dissolve and go away on its own.  He will have a prostate inspection on December 4 to see how things are progressing.  John is interested to hear if there are any others who have had this experience.  Please add a comment below if you have had this, or know somebody who has.

I also got a note from Geraldine, an Irish woman living in Britain.  She suspects that Irish ancestry may imply increased risk of bladder and other cancers.  Not sure if there is a correlation.  I suspect diet has more to do with it than genetics.  Any thoughts or observations from out there?

I also need to report on body acidity, alkalinity, and diet.  First a few words about body pH.  There is not actually such a 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.  What is overlooked 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, cytosol - the fluid within each cell.  The easiest one to measure pH on yourself is urine.

Measuring urine pH is also 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.  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.  While all of this may be intellectually stimulating, what's the point?  Simply this.  If you have too much of something present nearly anywhere in the body, it will ultimately show up in the 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 most cancer patients.  By adjusting diet or other intake, one might be able to have the urine become neutral or alkaline, meaning that the alkalinity capacity of other areas of your body is maxed out - thus creating an environment that is toxic to cancer growth.  

Therefore I set out to measure my urine routinely and see how things were working.  I tested my urine pH level for (almost) every urination for about 40 days, attempting to isolate trends linking certain foods to pH response.  I used the test strips described in THIS POST last year.   Strictly speaking I did not collect enough data to substantiate any trends, but enough (perhaps) to indicate if any might be present. The most striking thing I noticed is that my urine pH is naturally acidic, in fact, VERY acidic - hovering between 6.0 and 6.5 most of the time.  The second was that diet has only a moderate effect on my urine pH, either up or down.  I noted some specific potential trends from some food, but decided not to pursue enough data to prove the connection.  It was pointless if one cannot take the body to alkalinity by diet alone, as seemed to be the case for me.  Nevertheless I will present them here for general education, keeping in mind the data are not conclusive:


Strongly Acidic Foods                     Mildly Acidic Foods
Red wine                                                   Chocolate (dark)
FOCC

Strongly Alkaline Foods                  Mildly Alkaline Foods
Broccoli                                                      Athletic Greens powder

I also got some data (2.5 weeks) from Sebastian in Argentina, who found the same thing - diet does not appear to control urine pH very effectively, nor does exercise.  Some heuristic data from David F. in England also supports this thesis.

So if one cannot get to an alkaline state with diet alone, what works? Going back to the original recommendation from John M. in Ohio and Julie T. in Illinois, it's a combination of healthy diet plus a daily dose of baking soda - sodium bicarbonate.  You can see their stories in the post referenced above and HERE.   I tried 1 teaspoon dissolved in 5 oz of water, very salty!  More water makes it less salty, but less water can be done quickly - like medicine.  2014 Update: I have settled on 8-10 oz of water for a HEAPING kitchen-measure teaspoon (not a tablespoon nor a spoon from the flatware drawer). John and Julie take it just before bedtime, but I found mid-morning or mid-afternoon to be best for me.  While one can take it every day without too much trouble, my urine data suggested I did not need so much.  Yet from time to time every second day was not enough for me.  I tried testing once or twice each day and hitting myself with a dose of bicarbonate whenever dropping below neutral, but work/travel/life in general made this hard to execute at times.  For over a year I have experimented with bicarbonate schedules, and have yet to find one that works consistently.  Most recently I have been adding 1000mg of calcium carbonate (in the form of Tums antacids) every night before bed.  This regimen requires a shot of baking soda only once or twice a week.  2014 Update:  Electing to err on the side of caution, I am taking a heaping teaspoon mid-afternoon, on an empty stomach, every second day, and occasionally supplementing with a level teaspoon the days in between (based on urine testing), plus 2000-3000mg calcium carbonate nightly before bed. So that's where I am right now.  Sebastian finds that the bicarbonate works well for him, and his urine is more acidic than mine!  See the chart below from Sebastian:




I had the privilege to meet this fellow in person earlier this year, and he treated his my wife and me to an outstanding (and quite expensive) dinner out in Buenos Aires.  I am eager to return there some day soon.  Sebastian and I are pictured in THIS POST.  More details and photos can be found on this OTHER BLOG.



A Legendary Event - March 12, 2013

Today's post is short.  We have a meeting of two winners in the battle against Bladder Cancer.  Can you guess who they are?  I will provide more details in a week or so...


Good News Across the Americas! - February 1, 2013

Had two of our "fraternity" members with cystoscopies scheduled for this week.  Good news of ALL CLEAR all around, and heartfelt thanks to God.  Join with me in celebrating stories from our brothers.

First up was Ben F. in Louisiana, whose procedures were on Thursday, January 31.  We shall have to change his name from "Mobile Biohazard Man" to "Hardcore Ben." Here is his report:

GREAT NEWS.....cysto yesterday was ALL CLEAR!! ......followed immediately by BCG. I never left the table. No need for biohazard stop along the way home. I think that this was my 20th BCG treatment.....
As you did, I moderated fluid intake a good bit and added Powerade Zero. Worked really good, was up only 2 times all night and feel great today. Also, took ibuprofen about 3 times, including this morning. Am now continuing to sip Powerade. Truly, God is great all the time and power of prayer is amazing..... This was my 24 month mark, so feeling real good about that milestone.... Am thinking about our brother, Sebastian, hope he has good news shortly.
 

On Friday, February 1, Sebastian in Argentina had his cystoscopy.  He emailed me that an ultrasound and lab work earlier this week were good, so all that remained was the short agony of the cystoscopy today.  Because Sebastián is a writer, El Caligrafo, his message was very concise:

Dear friend
It's ALL CLEAR !!!!!!!!!!!!!!!!!!!!!!!!

I think we shall conclude that this is a week of good news.

Want to also mention for the record that Ed B. in Washington was also ALL CLEAR in early December, making it over 6 years for him!

God is indeed good, ALL THE TIME! 

I offer a virtual "high five"to my fraternity brothers! 


 

Maybe Someday - January 18, 2013

 Maybe someday is when I will get around to my next substantive blog posting.  I already know the topic - diet and urine alkalinity.  I have collected a lot of data and so far it's suggestive, but not conclusive.  Apparently other factors affect the acidity of urine in the bladder.  Trying to separate the signal from the noise.  Not succeeding.  At least we have had consistently good news from our "fraternity members" with no cancer detected for Brian S. in Atlanta on January 16, Steven S. in Tennessee on December 13 and Roy B. in Alabama on December 13. Next up is Ben F. (aka Mobile Biohazard Man) in Louisiana on January 31. 

One thing I can report right now is the original premise from John M. and Julie T. is fully validated. A teaspoon of baking soda in 4-8oz of water will turn your urine alkaline (regardless of diet) for up to 18 hours. While this works, it's a bit hard to swallow (literally), and I am unsure of the long-term effects of so much sodium intake. Better than bladder cancer, maybe!

In other news, I no longer resemble the fat dude in the Ferrari in the blog header photo above.  I have lost 40+ pounds and kept it off.  I'd like to lose 30-40 more, but not happening so far.  Less hair now, too.  Anybody want to lend me their Ferrari for a new photo?  (Undying thanks to the original car provider and photographer, New Age Guy!)

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)