Got Bladder Cancer?: August 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!

Current Status - June 16, 2022

First time here?

READ THIS POST FIRST.

CLICK HERE for the beginning of the story.

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Had an interesting annual checkup - no cysto, but ultrasound and blood/urine tests. Bottom line ALL CLEAR now 14 years and counting! God is good!

My parents were from a generation that feared seat belts. In May of 2013 they were both ejected from their vehicle (my father would have said "thrown clear") and did not survive. Automobile safety technology has dramatically improved since the 1950s and 1960s.

People, if you are traveling over 35mph, WEAR YOUR SEAT BELTS!

BLADDER CANCER ROLL CALL

Recent Results

2022

ME! - Steve K. in Bodrum, Türkiye ALL CLEAR on June 10. - 14 yrs

Wil S. in Chicago ALL CLEAR on March 22. - 15 months
HK in Toronto ALL CLEAR on Feb 5. - 13+ years

2021

Steven S. in Tennessee ALL CLEAR on Oct 27. - 10 years
Roy B. in Alabama ALL CLEAR on May 4. - 9 yrs
Scott in South Carolina ALL CLEAR on April 20. - 6.5 yrs

2020

David F. in England ALL CLEAR on October 2 - 14.25 yrs and finished with cystos now!

2019

Julie M. in Illinois ALL CLEAR on June 15. - 8+ yrs

Roy B. in Alabama ALL CLEAR on June 24. - 8 yrs

2018

Ed B. in Washington ALL CLEAR January (but battling lung cancer now). - 9 yrs Bladder Cancer Free
Patrick P. in LA area ALL Clear on November 28. - 9 years
Sebastián in Argentina ALL CLEAR on October 9. - 5 yrs
John B. in Minnesota ALL CLEAR on May 24. - 5 yrs
Doug B. in Tennessee ALL CLEAR on April 7. - 3 yrs
Ben F. In Louisiana ALL CLEAR on Feb 22. - 6 yrs

First time here? READ THIS POST FIRST.

CLICK HERE for the beginning of the story.

Need to contact me? Use the photo-link near the bottom of this column.

Short Summary of My Situation

On March 31, 2008 I was diagnosed with bladder cancer. As a non-smoker, at my age, with no family history of cancer on either side, I was quite surprised. The cancer was T1-G3 and Non-Invasive. It's not immediately life threatening, but my bladder is still at risk. I have been CANCER FREE via surgery for 14 years now, an important number - having exceeded both the two year ultra-high-risk and 10 year medium-risk recurrence periods. Less than 2% chance of the cancer returning now, not zero, so lifetime annual cystoscopies are in order. In addition I have completed 6 weekly treatments of initial BCG immunotherapy and nine 3-week maintenance rounds with moderately unpleasant side-effects. I have implemented radical dietary changes (limited pork, shellfish, sugar, ZERO artificial sweeteners (except stevia), processed flours, or chlorinated water), take several vitamins and supplements including the Budwig Flax Oil Cottage Cheese (FOCC) mix, resumed PectaSol-C MCP,and added regular light exercise.

Every year my doctor will visually inspect for new cancer growth via cystoscope, or a combination of ultrasound with blood and urine tests. While the probability of recurrence is not zero, the risk of disease progression is dramatically decreased now. The downside picture is merely a nuisance. Annual checkups for life. And any new cancer leads to another TURBT surgery to remove and analyze what's there. Probably nothing more beyond increased surveillance after that.

I have pursued an analytical approach to Complementary Therapies - those that can be done IN ADDITION TO what the doctors are doing. There are over 200 "unproven" approaches out there, and some work sometimes. I have conducted an objective, systems-based analysis many of them to determine which ones work under which conditions, looking for common, science-based threads. My current set of things I am doing is described in detail in this post.

All diagnosis, prognosis, and medical treatment recommendations have been validated with second opinions from a urologist in Indiana and Dr. Lamm in Arizona.

My Medical History

On March 31, 2008, I received the very unwelcome news, "You've got bladder cancer!"

I was born in 1959, and I am a white, male, American. I married at age 24, and in October of 2008 we celebrated our 25th anniversary. We have no children, and that's OK with us. I had a vasectomy in 1999, so no changing minds on that decision - and the docs dismissed that early as any type of contributor to the situation.

I am six feet, zero inches, and was 255 pounds when all this started, but weight decreasing now thanks to surgeries and this wake-up call. I am NOT saying cancer comes from being overweight, but weight exacerbates all other problems. (Down to 240 pounds as of 9/1/08, down to 230 pounds as of 12/31/08, down to 220 as of 5/15/09, but back up to 230 and holding since...)

My blood pressure (checked and tracked weekly) runs a hair high - 130/90. Been steady at that level for many years. Been higher lately - stress will do that.

I don't smoke, and never have smoked anything, including marijuana. The docs had some problem believing me, as smoking is a strong indicator for bladder cancer. I tried asking if I should take it up now to break even, and they finally let it go. I find the whole idea of smoking distasteful, having suffered in a home where both parents favored unfiltered Pall Malls. The docs claim that secondhand smoke at home from birth through my high school years would not be a factor.

They also suggest that exposure to radiation and chemicals can cause this. I worked in a chem lab at college and there was stuff around; but my exposure was not that much and I never rubbed my groin on any of it!

I do enjoy an occasional alcoholic drink - usually a couple of glasses of wine with dinner or maybe a beer or two with pizza or during a televised sporting event. My use is less than daily and almost never more than two in any day.

I was diagnosed with gout in 2004. Gout is a crystallization of uric acid in the joints - primarily in the left big toe. These crystals cause irritation and inflammation - then BIG TIME PAIN. Gout supposedly comes from eating rich foods and poor circulation. I may also have a recessive gene for gluten sensitivity which may have contributed; but I have not as yet investigated this. I controlled the gout successfully for a while by super-hydrating (one gallon plus of fluids per day) but 4 international trips proved that I could not maintain or control this outside of home and an air-conditioned office. So in 2006 I began taking 75mg of allopurinol daily. This is also NOT a factor for bladder cancer. Subsequently I changed my diet and lifestyle and lost a lot of weight. Now I am not taking any medication for gout, nor have I had an episode in many years.

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

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Current Status - June 16, 2022

My parents were from a generation that feared seat belts. In May of 2013 they were both ejected from their vehicle (my father would have said "thrown clear") and did not survive. Automobile safety technology has dramatically improved since the 1950s and 1960s.

People, if you are traveling over 35mph, WEAR YOUR SEAT BELTS!

BLADDER CANCER ROLL CALL

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