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!

Cancer Fighting Supplement - Beta Glucans - August 9, 2009

At some point each cancer fighter has to decide what conventional medical treatments to follow, and what, if any, other things to do to help battle the disease and discourage or prevent recurrence. The TURBT and BCG therapies from my doctor have been described in detail, and I have also discussed diet, exercise, vitamins, and supplements in general. When blog readers contact me, they generally outline that I am doing A, B, C and so forth and they are doing, A, C, X, Y and Z. I don't know if they expect me to comment or not, so I try to be encouraging. Even if I might have looked into X, Y or Z, I generally refrain from commenting and try to respond with something encouraging. One thing that occurs to me is that I could do a better job of explaining why I chose the things that I do in addition to the doctor's treatments. I previously outlined the diet and exercise regimens, and wrote at length about the Budwig Protocol and FOCC. So future posts will try to explain the logic and evidence behind the other supplements and vitamins I am taking.

One of the “alternative” cancer fighters that has been around for a long time is a series of compounds known as Beta Glucans, which are described as "biological response modifiers" because of their ability to activate the immune system. Beta Glucans seem to make the immune system work better without becoming overactive. In addition to enhancing the activity of the immune system, Beta Glucans may also lower elevated levels of LDL cholesterol, aid in wound healing, help prevent infections, and have potential as an adjuvant in the treatment of cancer.

While there are several forms of these compounds, there is one type that seems to have the best effects. Beta(1,3)D Glucans are chains of D-glucose molecules, with the six-sided D-glucose rings connected at the 1 and 3 positions. Smaller side chains branch off the (1,3) polysaccharide backbone. The most active form of Beta(1,3)D Glucans are those that contain (1,6) side-chains branching off from the longer Beta(1,3) Glucan backbone. These are referred to as Beta-1,3/1,6 Glucans. Researchers have suggested that it is the frequency, location, and length of the side-chains rather than the backbone of Beta Glucans that determine their immune system activity. Another variable is that some of these compounds exist as single strand chains, while the backbones of other Beta-1,3 Glucans exist as double or triple stranded helix chains. In some cases, proteins linked to the Beta(1,3) Glucan backbone may also be involved in providing therapeutic activity. Although these compounds have potential enhancing the immune system, there are differing opinions on which molecular weight, shape, structure, and source of Beta(1,3) Glucans provide the greatest therapeutic benefit. The Beta(1,3)D Glucans from yeast are often insoluble. Those extracted from grains tend to be both soluble and insoluble. Other sources include some types of seaweed, and various species of mushrooms such as Reishi, Shiitake, and Maitake.

How does it work? Research at Harvard, Baylor, Tulane, the Armed Services Radiobiology Research Institute, U. of Nevada School of Medicine and a multitude of other research centers demonstrates Beta Glucans extracted and processed from yeast cell wall enhance immune system awareness and attack of the cancerous cells. Beta Glucans promote cancer cell elimination by macrophages, neutrophils, T cells, NK cells and B cells with appropriate antibodies (including enhancing the cancer cell killing ability of processed monoclonal antibodies - mAB). Macrophages and other immune cells are better enabled to attack the cancerous cells, therefore hindering or stopping cancer’s multiplication and spread. Beta Glucans in uniform small particle sizes (micronized) may be taken orally, only if made in a preparation that will not reaggregate when exposed to water in the digestive system. This type of Beta Glucans is the only type that can be absorbed through the digestive tract into the bloodstream where it can be ingested by immune cells to yield a faster and more extensive response.

Specific research on the effect of Beta Glucans on bladder cancer was documented by Thompson I.M., Spence C.R,. Lamn D.L., DiLuzio N.R., “ Immunochemotherapy of bladder carcinoma with glucan and cyclophosphamide”, Am. J. Med. Sci. 294 (5): 294-300. 1987 The abstract of the article states:

Recent evidence suggests a role for both immunotherapy and chemotherapy in the treatment of transitional cell carcinoma. Glucan, a derivative of the cell wall of Saccharomyces cerevisiae and a potent immunostimulant, was used in combination with cyclophosphamide for treatment of implanted murine transitional cell carcinoma (MBT 2). Cyclophosphamide prevented tumor appearance when tumor burden was low and decreased tumor growth rate in larger tumor volumes, but was unable to eradicate established tumors. Glucan did not reduce tumor incidence but decreased animal mortality. These experimental observations may correlate well with clinical evidence and suggest future clinical use of these agents.

And yes, the Lamm cited above is Dr. Don Lamm, with whom I have consulted.

The evidence that Beta Glucans are useful and helpful for immune system boosting and free radical elimination is impressive. There are dozens of peer-reviewed research papers, often using mice or primates, that indicate the specific benefits in several cases. While not necessarily applicable to humans, such studies suggest a strong possibility of human efficacy.

Beta Glucans appear to be useful in fighting cancers (including bladder cancer) and aiding against a variety of disorders by stimulating the immune system. These supplements are not regulated and may be found in nearly any grocery, drug store, or heath food store,

and all over the internet, with a variety of brand names and price points. Yet there is evidence that the effects are quite different, and not always correlated to price. For best results, Beta 1, 3 Glucans should be taken on an empty stomach. Beta 1,3 Glucans are transported across the intestinal cell wall into the lymph and blood streams where they are available to activate immune function. Studies have verified that both small and large fragments of Beta Glucans are found in blood serum, indicating that they are absorbed from the intestinal tract. I took Glucans derived from mushrooms for a while, but recently switched to a yeast-based variety. The Journal of the American Neutraceutical Association (JANA) recently studied a number of commercially available Beta Glucans for a variety of effects in the human body. One product stood above the rest. You can read the entire JANA article here. Even though it costs about $1.50 per pill (or about $1 per pill in bulk), and you have to take one pill per 50 pounds of body weight (at 220 pounds I take 4 pills nightly), I feel that the research on benefits and effects justifies the cost and hassle. If you are interested, you can buy the yeast-derived product I am using at this link. Now you have the data to make your own decision.