Judgment Day #5 - ALL CLEAR - December 3, 2009

It was a cold, clear beginning to Judgment Day 5 with 9F (-13C) reading on the outside thermometers this morning. As usual I had mostly cleared my schedule for the day before, and had a quiet evening at home. Also usual is the battle with trepidation, all confidences in God and my own treatment regimens aside. As David F. pointed out in his blog post here, the brain is supposed to be your friend, but it will play funny tricks on you when cancer is involved - running through every scenario of doubt or disaster. One thing that made it different this time is that after four of these judgment days accomplished with good results, I was much better able to imagine and visualize a positive outcome scenario. For the first three I had stubbornly insisted on not planning ANYthing at all for after the judgment day. For the last one, I planned a dinner outing a week following - a big leap of faith for me.

For this one I cleared the schedule yesterday and today, but I actually went to work part of the day yesterday, and I have a meeting scheduled for 8AM tomorrow morning. Plus dinner outings, Christmas parties, and the lot all planned out for the next few weeks. Given the knowledge that a good outcome was possible, if not theoretically probable, I was able to focus my energies yesterday on working the best case scenarios. Sure, the old brain, left to its devices, jumped to some bad scenarios, but I was able to simply focus on tasks at hand to stay on the positive path. I kept myself busy with household chores, internet research, and even planned a celebratory dinner out tonight - which will now be executed. I even toyed with the idea of picking out a wine from our newly refreshed supply, but decided to leave that happy task for this afternoon.

All of this plotting worked well, and I dropped into bed by 11PM last night, falling asleep quickly. I slept soundly until 4:45AM, and that was that! Spent some time reflecting, spinning scenarios (mostly good with some bad ones in for practice), and then got up early. Resumed planning things based on a positive outcome, watched a little television, and practiced my deep breathing techniques for the uneventful hour drive to the doctor's office. We arrived 10 minutes early and signed in without issues - other than to be informed that Dr. Hopkins was running a bit late - quite normal for this time of day (11AM). We were shown to the exam room by Margaret, his usual assistant for these scope procedures. After faithfully delivering a urine sample, I also said hello to Gloria, our favorite assistant for BCGs. Margaret made everything ready, noting that the camera was available today - much to my delight. She suggested getting undressed and hopping on the table. Experience has taught me to ask if we were next. Margaret admitted that there were 3 ahead of me, and agreed to notify us when I was next. This allowed me to spend most of the wait time sitting and dressed rather than lying half naked - a marked improvement in the total experience.

While we were waiting Gloria came in and showed us her daughter's 8th grade school photo. Beautiful little girl - she has apparently told mom that all the boys in her class are stupid and immature. Certainly true, and unlikely to change in the next several years (if ever)! We exchanged more pleasantries and soon it was announced that I was next. A short wait on the table and Dr. Hopkins came right in and got to work. Kathryn and I both watched on the screen as the scope went where it was designed to go and showed us everything inside. Looked perfect to me, even better than several months ago. The doc does not like the tv scope as well because everything is upside down - "The bottom of the screen is not the bottom of you..." But he managed well and was all complete and gone within 3 minutes of his arrival. He cleared us to schedule the next cystoscope and BCG next March, putting a crimp in my March Madness

All scheduled and booked and back home to inform close friends via email and other close friends and strangers via this blog posting! On the schedule for this evening is a nice dinner out for the two of us with a great bottle of wine (or two)! If you ever find yourself near Salt Lake City, a wonderful and reliable choice of restaurants is Meditrina. Located conveniently outside of the downtown area and right by the minor league ball park, it is one of our favorite places to go for dinner. Maybe we will see you there tonight or some time soon!

The ALL CLEAR report today marks 18 months now cancer free. Cysto and BCGs at 21 months in March, and the biggie two year point next June - after which I can CAUTIOUSLY begin to use terms like "remission" and "survivor." That seems far in the future still, and statistically that may be the case. But I know that statistics consist of older people who have no hope or faith and do only one or perhaps two of the ten things I am pursuing for treatment regimens. So my confidence grows, despite a feeling of unreality that always seems to happen after these inpsections. And I will be peeing fire for a day or two just to keep me honest. And one other thing I know, GOD IS GOOD - ALL THE TIME.

basketball plans. Sometimes cancer is damned inconvenient...
Lyrics by Don Moen

If you're walking through the valley
And there are shadows all around
Do not fear, He will guide you
He will keep you safe and sound
'Cause He's promised to never leave you
Nor forsake you and His Word is true

God is good all the time
He put a song of praise in this heart of mine
God is good all the time
Through the darkest night, His light will shine
God is good, God is good all the time

We were sinners - so unworthy
Still for us He chose to die
Filled us with His Holy Spirit
Now we can stand and testify
That His love is everlasting
And His mercies - they will never end

What About Chemotherapy? - October 31, 2009

It's been almost three weeks since my last post, and nobody is complaining too much. And there are a few out there that like to read this blog, so I shall continue for your benefit. Blog stats indicate that about 30 folks hit this blog each day on average, and about a quarter of them stay for more than a few seconds. Some are harvesting the images, and a significant number stick around and read several pages. So for the silent minority out there, this blog's for you!

I get a couple of cancer news items emailed to me weekly, and one recently told of the discovery by a local university that glutamine also has a role in the long-established medical model that CANCER LOVES SUGAR. Some of the background and findings are interesting, and it does highlight the simple (but apparently not well-known) fact that cancer has a serious lust for sugar. Not just any sugar, mind you, but specifically glucose. I may discuss the simple chemistry of common sugars and starches and how they contribute to blood glucose in a future post. Today's post will focus on how blood glucose feeds cancer directly, and how a clever technique can use this fact to target chemotherapy to kill cancer cells without causing widespread damage in your system. Why discuss this here, when BCG is the treatment protocol I am using? Because when BCG fails, we need to be ready with something besides radical surgery to remove bladder, prostate, and lymph nodes in "yard sale" fashion. HK in Toronto and Ed B. in Washington state have both had serious reactions to BCG, so even our little bladder cancer fraternity of blog readers here yields a significant sample who are interested in an alternative.
HK is at the mercy of the Canadian doctors and their system, but he might choose to venture abroad for alternatives. Ed B is already looking, just in case.

In my last post I disclosed the ten things I recommend to battle cancer, and I showed a logic model to support the multi-pronged approach.
Number one on the list is to follow medical advice - preferably with research and a support team to back you up. Most people I encounter do this, and for the majority that is ALL that they do. The few that do anything more usually skip down to #9 and take some vitamins and/or supplements. The exercise nuts do #10, but they were all doing that before their cancer. In my opinion the second priority after allopathic medicine is to STOP EATING SUGAR and simple starches. Ironically this is both the easiest and the hardest thing in the world to do. Easy because you just have to say "No!" Difficult because sugar is in everything and human beings love it almost as much as cancer does. Let's look at the article I referenced initially from the Salt Lake Tribune, found at this link and reprinted in its entirety below. Boldface type emphasis was added by me:

Tumors Hungry for Sugar
Huntsman Institute » Findings point to new ways to fight cancer.
By Brian Maffly, The Salt Lake Tribune
Updated: 08/24/2009 09:48:06 AM MDT

Utah biochemists have made a breakthrough in understanding how cancer cells feed on glucose, possibly paving the way for new drugs designed to starve cancer into submission.

Cancer cells use glucose in tandem with another crucial nutrient, the protein glutamine, an amino acid found in many foods, according to findings published this week by researchers at the Huntsman Cancer Institute. The findings could spur development of new chemotherapies that would stall tumor growth by deactivating cancer cells' ability to use glucose, said Don Ayer, a professor of oncological sciences whose lab published the research in the Proceedings of the National Academy of Science .

For decades, science has known that cancer cells suck up inordinate quantities of glucose, nature's ubiquitous biological fuel, in a process that quickly blows tiny tumors into deadly malignancies.

PET scans use cancer cells' high rate of glucose metabolism to build images of tumors. These cells also need glutamine, just like normal cells.

"It's absolutely clear you need both for tumor growth. They seem to need it more than other nutrients. If you deprive them of one or the other, tumors don't grow," Ayer said.

Mohan Kaadige, a postdoctoral researcher in Ayer's lab, spearheaded the study, whose co-authors include Ayer; Sadhaasivam Kamalanaadhan, also a member of the Ayer lab; and Ryan Looper, an assistant professor in the Department of Chemistry.

The lab's work, funded by the National Institutes of Health and the American Cancer Society, seeks to unlock the molecular mysteries associated with tumor proliferation.

"Research into the factors that regulate the metabolism and growth of cancer cells is still at an early stage," said Janet Shaw, a U. professor in the Department of Biochemistry and a former Huntsman researcher. "Dr. Ayer's discovery that glutamine and glucose utilization are linked is important because it identifies a number of new molecular targets that could be manipulated to interfere with the growth and survival of tumor cells."

This week's discovery builds on the lab's previous research identifying the role of MondoA, a protein that switches genes on and off, in tumorigenesis. This protein affects the gene TXNIP, which suppresses tumor growth by blocking glucose uptake into cancer cells. The Ayer team discovered that in the presence of glutamine, MondoA deactivates TXNIP. This is important because it suggests new ways to impede tumor growth.

"If you don't have glutamine, the cell is short-circuited due to a lack of glucose, which halts the growth of the tumor cell," Ayer said.

The next step is to learn how the Mondo protein works in relationship with glutamine.

"If you can modify the metabolism of the tumor cell you can have a benefit. This is not a new idea," Ayer said. "If we can figure out how glutamine signals to Mondo, that has quite a bit of chemotherapeutic potential."

Were it developed, a drug that blocks glucose uptake would not likely choke off normal cell growth, as many cancer chemotherapy drugs currently do because of their toxicity.

"Tumor cells seem to be addicted to glucose. Normal cells are not. They grow at a slower rate and if you challenge them with nutrient deprivation they can be more flexible," Ayer said.

Ayer emphasized that his lab's findings shed no light on dietary impacts on tumor growth. Glutamine is the most common amino acid in our bodies and glucose levels are tightly regulated by our endocrine system, regardless of sugar consumption.


So here I am recommending something directly disputed by the last paragraph above. While it is true that the endocrine system "tightly regulates" blood glucose, Dr. Ayer is taking a very simplistic view of things. The endocrine system does indeed strive to keep blood glucose at a constant level, but it is not successful except when looking at the average. There are spikes in blood glucose (temporary hyperglycemia) as well as dips (temporary hypoglycemia). My approach #2 is to avoid eating things that make a your blood glucose spike, washing cancer in a bath of its favorite food. Sure there is enough blood glucose on average to allow cancer to survive, but why do anything to supercharge it by flooding your blood with glucose to be easily snagged by cancer cells?


Insulin Potentiation Therapy (IPT)

Perhaps something more could be done to exploit this trait of cancer cells. By using insulin a doctor can also regulate the blood sugar of a patient. Seems like we could just drop the blood sugar down until the cancer dies, and then all would be well. As simple and elegant as this approach might be, it will also kill the patient! The Utah researchers in the article above noted a connection with glutamine, and hope to devise a new treatment after more research. Some of us don't have that long to wait, and there is some good news. There is an existing treatment, permitted to be used in the United States (and nearly everywhere else), that exploits the cancer-sugar relationship by using insulin to regulate blood glucose along with low doses of conventional chemotherapy. This mechanism is called Insulin Potentiation Therapy, or IPT. Some prefer to call it by the slightly more familiar-feeling name of Low Dose Chemotherapy. The theory behind this protocol is to carefully lower a patient's blood sugar to induce starvation in cancer cells, which respond by sending out "wide open" feelers (aka insulin receptors) to take any glucose that comes along. This process is very short - maybe 10 minutes to lower the level to a minimum safe one, then maintain for five minutes - 15 minutes total. Then the doctor injects a low dose of chemotherapy drugs followed by an intravenous bag of glucose solution. The cancer in its greed for sugar also absorbs a disproportionate amount of the chemo drugs, causing the desired effect of cancer cell mortality. All with far fewer side effects than a full dose of chemo will give, preserving immune system function to deal with fighting cancer recurrences.

Many established medical organizations in the United States have denounced IPT, primarily because of the lack of rigorous, peer-reviewed studies to substantiate its effects. There are also some criticisms of the expense associated with the treatment, but to be fair, even the most egregious charges are smaller than the routine costs of conventional chemotherapy. In any case, one could try IPT for effect and follow with full dose chemo if needed. So there is little risk in trying IPT first.
And it is very important, especially with Stage 3 and 4 cancers, that IPT be tried BEFORE conventional chemo, because the destructive effects of full dose chemo on the immune system makes it nearly impossible for the body to safeguard itself from a relapse of cancer.

Again, I am not doing IPT now. If the BCG continues to work (along with the other nine things I am doing), I never will need to try IPT. But if BCG fails, it will likely be the very next thing I investigate. If you are looking for an alternative to BCG for bladder cancer or full dose chemotherapy for any other cancer, take a hard look at IPT. More information and a list of practitioners worldwide can be found in the links below.


In the meantime, despite Dr. Ayer's fatalistic advice above to eat what you please, I shall continue to avoid sugar in all its forms to prevent glucose spikes. This is a real struggle, as sugar in some form is included as an ingredient in nearly everything, both prepackaged and prepared in restaurants. But if you take the attitude that sugar is deadly poison and work hard to avoid it, you can be successful. Sugar is beautiful, seductive, and addictive. And it tastes good, too! So tasty and so seductive. We have to ask ourselves, is sugar good enough to die for?


Dealing With Any Type of Cancer - WHAT TO DO? - October 11, 2009

 UPDATED in March, 2014.  
(Changes from original post noted in red text)

I will begin with the answer to the question implicit in the title. How should someone, or ANYONE, deal with a cancer diagnosis? All the answers start in one place. YOU HAVE TO CHOOSE NOT TO DIE FROM CANCER. That is the front line defense and the bottom line of any treatment regimen. If you accept that your cancer is a death sentence, then ultimately it will be.

Don't get me wrong - I am not going to suggest using willpower for self healing and other miracle working. I intend something much more practical. Here's the deal. If anybody I know has cancer, or any of their friends or family, I hear about it. Same goes for my family - if any friends or relatives of friends have cancer, they hear about it, and then I hear about it from them. Generally the situations described are grave, and people will imply that there is little hope. Occasionally some will ask, but more often the question is unspoken - what should the person who has cancer DO about it? Since I have cancer and I have done some things that have been successful to date, one presumes that I am somehow qualified to answer the question. I don't know about that, but it's a semi-free country and a free-ish internet, so I do have the forum if nothing else. (As they say on emails, texts, and other electronic media these days - LOL.*)

Here is an example. My mother recently attended her high school reunion - we won't mention how many years. I asked about the class valedictorian, the coolest guy from her small town, who I had met once or twice when I was very young. She said he looked good and was doing fine, but 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 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. Perhaps this will really be the case. My opinion is that it may not necessarily be so, and accepting the fait accompli is needless and dangerous. Often these cancers are treated with surgery plus chemotherapy and/or radiation therapies, which could kill the cancer - if they don't kill the patient first. Other cancers (like mine) have some thankfully easier treatments (albeit still unpleasant). My particular 10 year survival prognosis with treatment for T1 G3 non-invasive bladder cancer was 70-80%, which is VERY high compared to most. So yes, I do count myself blessed and fortunate for that, and for the success to date.

Back to the main point here - 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." I will develop this logic thread more later. Step 2 is a combination of following the doctor's advice while educating yourself and your support team, and adding to that 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.

In addition to the "doctor knows best" conditioning, we also tend to accept that there is nothing else that can be done. Just surrender to the doctors and hope/pray for the best. Please do not misinterpret me - I heartily recommend most things that doctors will suggest. I also think there is plenty more that can be done, and these things lie outside the areas of your doctors' collective training. They are not particularly weird or strange, and they certainly 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 really 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. After all the goal is not to die FROM CANCER. Which gives you the privilege to die from something else, hopefully much later in life. Say something like a skydiving accident on your 100th birthday, having too much sex, or other happy pursuits. (LOL* again)

How does all of this work together? I have developed a logic model that shows how many actions can play together to secure the desired result: CANCER-FREE STATE. The actions one can take (including conventional medicine) are listed on the left, and the logical outcomes are traced out from left to right, resulting in the final desired goal - the cancer-free state. The model is still in draft form, but it's now mature enough to make sense to the few logical readers out there in cyberspace who may choose to pick through it. My mother's friend from high school is a very smart guy, so perhaps this will appeal to him and others like him. One further disclaimer - the software I used to create the model is designed to make the chart attractive and easier to read, so the actions at left are not necessarily in priority order. And you WILL need to click on the diagram to get a much larger and readable version.  Note: I have not updated the chart to include baking soda (#4 below), but it falls in the same area as FOCC.

 

Please Click on Diagram to Enlarge!

Apologies to any who have found the discussion so far (or the diagram above) to be confusing. It was not my goal, and I shall try to summarize more succinctly. All of the actions at the left side of the chart are actions that I, myself, have taken and continue to follow. As a group these actions logically appear to be much more effective towards reaching a cancer-free state than conventional medicine alone. They boil down to a radical lifestyle change in terms of attitude, diet, and exercise. Seems so simple, but...

When I give some of these ideas to people whose family and friends have severe forms of cancer, the suggestions are generally met with derision and perhaps a roll of the eyes. Even if they pass them on, the cancer sufferers tend to have the same reactions. I accept that I cannot help anyone who does not want to be helped. But if you are willing to CHOOSE NOT TO DIE FROM CANCER, then you might also be willing to choose to do some things you would not otherwise do. Certainly I would choose NOT to have a tube of bio-cooties jammed up my favorite private part, yet people tend to accept this type of thing more readily than something simple like, for example - stop eating sugar. I find it very odd, but a good friend pointed out that it actually took 3-4 months for me to come around to my current point of view. Thankfully I had that much time!

Attitude is the key. Whether you have the herculean strength to draw it from yourself like some have, or whether you are content to draw from an outside source (i.e. God, support group, relentless spouse, etc.), having the attitude that it is possible to survive renders all the actions more effective. I described in a previous post how David Eliot from New Zealand noticed the same phenomenon and applied it in his own case with some degree of success. I think he went about it the hard way, yet the results are there. So if you believe that you can survive, the next step is to decide what you will do to survive. Many follow only their doctors' advice and do OK, but many more still die of cancer. So I believe that something more can and must be done. Here is the list of 10 things I have done in priority order:

  • #1 - Surgery and Biotherapy to remove and attack the cancer
  • #2 - Stop eating sugar, simple starches, and micro-processed food to avoid glucose spikes to feed the cancer
  • #3 - No chlorinated water or drinks made with chlorinated water or ice to preserve intestinal function
  • #4 - UPDATE 2014: On an empty stomach and well before your next meal, take 1 teaspoon (5 g) per day of baking soda (sodium bicarbonate) dissolved in 6 oz (175 ml) of water or more to maintain body alkalinity (does not affect blood pH which stays in a very tight range, but will increase the pH of lymph, saliva, urine and other bodily fluids and environments).  In addition, eat Flax Oil & Cottage Cheese (FOCC) daily weekly to boost cell respiration (aka Budwig protocol - see my FOCC post) I now have FOCC only once per week, because it tends to spike body acidity.  Despite this fact, all of the positive benefits are still there.  For people with active or recent cancer - who have been recently diagnosed or within the first two years after surgery, I still recommend FOCC daily, along with the baking soda.  Just don't take them together!
  • #5 - Avoid potential carcinogens (eat organic, all-natural, and wild foods - avoid bottom feeders and artificial sweeteners of all types) to avoid triggering new cancers
  • #6 - Eat foods with beneficial compounds (see Beliveau book or cookbook, Servan-Schreiber book, or read this post of mine) to add to the assault on cancer cells
  • #7 - Consume natural enzymes and pro-biotics to improve digestive function
  • #8 - Eat more fiber and less protein very few carbohydrates to improve digestive function and general health
  • #9 - Take immune-system boosting and other supplements and vitamins just in case
  • #10 - Exercise regularly too keep the whole system operating and lubricated - ranked last because I still HATE it
Do I need to do every one of these things? Probably not. Will I experiment on myself by deleting them using a cleverly designed experiment to see which factors are the most influential in cancer prevention and risk a recurrence? No thanks! Are there other things I can or should do? Perhaps. The beauty of the internet is the wealth of information available. The curse of the internet is the fact that most or all of this information is buried beneath and surrounded by a nearly insurmountable pile of absolute bullshit. So I decided to go with the list above.

I promised to come back to the thread about folks who have already decided to die. 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. Six months ago he was diagnosed with pancreatic cancer that was found to have metastasized. His condition is 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 is unpleasant enough. For whatever reason I find that 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. Since they know the probability is that they will soon die from cancer, they are not willing to do anything unknown or "unscientific". Deep down inside they believe that since they are going to die anyway, why should they give up their favorite foods or take pills that their doctor did not recommend? And they accept that they will inevitably die from their cancer. If this is your situation, you should also face up to the reality of your attitude. By choosing not to do anything extra or potentially difficult, you have chosen instead simply to die, especially if the doctors have told you that there is little or nothing that they can do for you. At least you can help them make a few boat payments on your way out...

Perhaps people like David Eliot, Dr. David Servan-Schriber, myself, and countless others who have chosen to do other things in addition to the medical approach are fools. But to "just go through the motions" and then die a slow and painful death from cancer? I say "To hell with that!!!" Let it instead be said that we are just stubborn - too stubborn to die of cancer.



*Laughing Out Loud

BCG News - Good News - and Bad News - October 4, 2009

One thing new to report from my last round of BCG is the emergence of the "flu-like" symptoms that have been described by so many as a side effect. My past BCGs have pretty much been a day of misery and urinary fire, then being a bit fuzzy or tired until the afternoon of the day following. With the reduction to 1/3 dose several months ago, the misery of the day has been dramatically reduced. All of those have been tracked on my BCG backup pages in great detail. But the last round was different, because of the increased flu-like side effects for 2-3 days after the BCG day. It starts with loss of appetite the afternoon of the treatment, with a pretty good headache the night of treatment day. Then near-total exhaustion, cramps, body-aches, and even minor chills through the night and all the next day or two. My final treatment last week was the worst so far - not the urinary symptoms or duration, which were fairly mild. But I had a two hour nap in the morning followed by a 4 hour nap after lunch on the day after the treatment. Mental functions seemed fine, but physically I was just exhausted. I skipped a nap on Saturday, 2 days after the treatment on Thursday, but that was a mistake. After going out for a long, late brunch on Sunday, I came home and collapsed into bed for a couple hours. Each day of the workweek showed a significant reduction in tiredness, and by Friday (8 days after treatment) all was pretty much back to 98% of normal. All of these symptoms are a good sign that the body is reacting to the BCG, which is exactly what we want it to do. But I have not tracked these symptoms in the past. If they recur next time (scheduled for March 2010), I will start reporting them for your education and entertainment.


Next we have some absolutely brilliant good news from David F. in England. He met with his "consultant" (doctor) on Saturday to review his case. He received a near-final "all clear" based on the results of his last biopsy. While some atypical cells were present, it was not considered to be a problem. The consultant toyed with the idea of "retiring" David to annual flexible cystoscopies (for life). But instead she chose to do one more "final" hard cystoscope and biopsy next April, the "gold standard" treatment to guarantee all clear. It seems to me that this is exactly what David was told last time, but he is in for one more trip to the hospital for a most unpleasant diagnostic. He is good with it, so all the rest of us will celebrate with him for the near-perfect good news he got last Saturday. Only one more procedure for him to be free from major interference for a lifetime! Here's a pic of Gemma Atkinson raising a pint in celebration of David's very good news indeed...


On the flip side we have some bad news from HK in Toronto. From the very first time his BCGs have been far worse than any others reported to me. During his first series of six, he was in absolute agony. He wondered to me if it was better even to die. I suggested discussing reduced dosages with the doctors. They gave him pills and pretty much treated him as he was just a complainer. The next series was also bad, and the last one was cut to 50% dose. It was almost too much for him to bear. After an initial diagnosis of epididymitis, they finally diagnosed him with BPH - Benign Prostatic Hyperplasia, a non-cancerous enlargement of the prostate. This condition makes the TUR surgeries, the insertion of the BCG tube, and the voiding of the BCG and other bits all VERY PAINFUL. He has suffered much, and now the Canadian doctors have him on Flomax, Cipro, and Phenazo, for urinary symptoms, and Celebrex plus Tylenol #3 (with codeine) for pain. Here is how HK describes his symptoms:

1) I get pain from to waist right to the perineum (sharp pain)
2) At night I get up every hour to go to the bathroom to urinate, but it does not empty
3) Sometimes I can not walk properly because of all the pain

The docs have told him no more BCGs forever. If his cancer returns, they must find another treatment. HK has had bloodwork taken (no results yet) and and had cystoscopy, urine test and a CT scan. Cysto was clear except for evidence of sever reaction to BCG. He will have urine, bloodwork, and CT results within the next two weeks.
He asks for all our prayers for an all-clear cancer report and relief from his agonizing pain.

Despite HK's rough times and suffering, he is continuing to research and study the problem. He found the very encouraging video below, which is a treatment that can be given by the Valley Cancer Institute in Los Angeles. Their website is full of advertisements, testimonials, and some research describing the process and its effects. But it does not say whether such is covered by insurance or how much it costs. Still might be worth looking into for those seeking an alternative to BCG.


3rd BCG Maintenance Series #3 of 3 - September 25, 2009

I was a little surprised when the doc's office called Wednesday to confirm my BCG appointment at 9AM instead of 9:15, but a quick check of the notes proved that they were correct. I had high hopes that this one would be both easy and over quickly. I was processed in with urine tested by 9:05 and the BCG dose was diluted and ready by 9:10. The doc had not arrived in the office yet, but we were assured that I would be his first stop. And so it was a few minutes later. The doc was surprised that my symptoms last week were slightly milder than the week before, as most people have progressively more intense side effects. I suggested my immune system was in top form, and Dr. Hopkins suggested that I was just weird. We discussed the schedule upcoming. Next will be an 18 month cystoscopy in 3 months, which is now scheduled for December 3 at 11AM. If all goes well, no BCG until after the next cystoscopy in March. I was delighted to hear it. He did not permit me to schedule March yet, preferring to see the cysto results in December first.

The trip home was uneventful except for a major construction traffic jam, so my wife used back streets to get around it, saving maybe half an hour.
Hydration plans executed, the symptoms started just before 3 hours post instillation and escalated rapidly. Much worse than the week before - about 4.5/10 on my subjective misery index. After all the urinary symptoms were concluded (around 7PM), I was beset by the expected flu-like symptoms of exhaustion, stiffness, minor body aches and cramping, and a pretty good headache. Plus, as usual, a total loss of appetite. By 8PM or so I decided to discard my macho-male persona and took 1000mg of acetaminophen. It took the edge off the pain, but perhaps an NSAID like ibuprofen would have been better. Unusually, I slept for the most part from 5PM until 7:20PM, and was back asleep again by 11PM. This morning I am still quite tired, and there is a lot of stiffness. Appetite has returned with a vengeance, though! In a day or two I expect that urination will again be a happy time, and in a couple of weeks I hope to be back to 100%.

I have received some communications from new readers of this blog. One from Mike via Wellsphere, who had his very first BCG this week. He instinctively clenched up on the tube during instillation, and had to force himself to relax to allow the process to continue. This is why I use the stress balls, breathing techniques and other distractions. Generally if I instinctively clench, I squeeze the stress balls and focus on pointing my toes, which seems to do the trick. Another more disturbing note came from Robert. I sent a reply, but his email bounced (twice). So try again if you are still reading. His feedback is reprinted below:

"I start my 3rd round of 3 bcg treatments in 12/2009. No Superficicial Cancer at present. My sexual activity is diminishing from all these treatments. I don't like these instillations."

I think it would be difficult to find anyone who would disagree with Robert's comments...


As for me, I was skipping breakfast and all fluids before each morning BCG, and then having a normal lunch.
Yesterday I had a big lunch of spicy food that was high in protein. Big mistake if the BCG is a difficult one. Would have been much better off with something smaller and easier to digest. Felt like I had a softball in my gut all day, which contributed to a strong feeling of nausea in the evening. I think any time I smell bleach or disinfectant wipes, I will feel nauseous for a while. Perhaps I need a better facility, like the one indicated in the second picture!

You can see the updated misery chart below, and a link to the details at the bottom of this posting.


(click to enlarge)

I made the final update (for this series) to the "pee by pee" details on the Series 3 Backup Page. (4/10 on the grossout scale).

3rd BCG Maintenance Series #2 of 3 - September 18, 2009

The trip to the doctor's office was quick due to one of the construction zones now being half cleared, and we were prepared with a detour around new construction. The instillation details were much faster and better than average, with both the doctor and me relaxed. Was done with the BCG and hobbling to the car by 9:29 AM. Hit the hydration immediately and symptoms appeared right on time 3 hours later. It was not as severe as last week and was about 90 minutes less duration. Today there is no soreness and only minor stiffness. All things considered, it was a good BCG. Though I would prefer to skip it - even if it means going to work instead!

Today's picture is a sculpture in Park Falls, Wisconsin. For some reason it reminds me strongly of Dr. Hopkins!

Below you can also see an updated comparison between Series 2 and Series 3 so far...

(click to enlarge)

I also updated details on the
Series 3 Backup Page as progress continues (3/10 on the grossout scale).

3rd BCG Maintenance Series Has Begun - September 11, 2009

First off, compared to things that happened on September 11, 2001, today and yesterday are nothing. But we go to our fates with BCG voluntarily, and it is certainly true to say that Bladder Cancer is not for wimps!

The trip to the doctor's office and the instillation details were uneventful, getting the BCG at 10:00 despite a 9:15 appointment. Did the usual sipping and flipping in the back of the Honda Pilot on the way home. A day later I feel as if I had a game of tackle football yesterday, a bit stiff and sore around the midsection and mid to lower back today. Brain is a bit foggy, but not awful. This time will be the same dosages as last time, but a major difference is 6 months in
between instead of 3 months. And so the body and bladder are in much better shape (despite cystoscopies in May and last week). And perhaps my bladder had "forgotten" about BCG and how to handle it. I fabricated a subjective "misery index" to help compare each time, and I hope it might help to explain how things feel. The scale-up duration is measured from the onset of symptoms to the peak, after which it tapers off. Total duration is from the onset of urinary symptoms until urination is clear and relatively free of discomfort (though body aches generally continue for 6-12 more hours).

LAST TIME
Series 2 (1 of 3) Misery
scale-up duration 2.25 hours, peak 4/10, total duration 19 hours
Series 2 (2 of 3) Misery
scale-up duration 15 Minutes, peak 1.5/10, total duration 11 hours
Series 2 (3 of 3) Misery
scale-up duration 1.5 hours, peak 2/10, total duration 11 hours

So yesterday was pretty much in the family, albeit the peak symptoms lasted longer, and it took longer for symptoms to begin - 5 hours instead of 3, making for a very long day and night.

THIS TIME
Series 3 (1 of 3) Misery scale-up duration 1.5 hours, peak 2/10, total duration 14 hours


One fact is crystal clear for me - the reduced dosage of 1/3 is far less miserable than any higher dosage.

You can see the comparison of Series #1 and Series #2 below:





And you can also see a comparison between Series 2 and Series 3 so far...

(click to enlarge)

I am also collecting the (not too gory) details on the
Series 3 Backup Page as progress continues (4/10 on the grossout scale).

BCG Again - September 9, 2009

Tomorrow is BCG day. Oh Joy - NOT!!! But really this is the best outcome with bladder cancer. No recurrence (so far) and continued treatments. As David F. in England always says, BCG may be awful, but not nearly so awful as chemo, radiation, or radical surgery. So no cause for whining here. I did have to get mentally prepared. Since it's been six months, I had to refresh myself as to the preparations necessary. So I took a peek at my BCG Prep page. Definitely overkill, but there is security to be found in being ready for any contingency. Had to stock up on rubber gloves and "tightie whites" - both to be viewed as disposable. Other stuff all checked out and ready for now.

It's been a good quarter for my fellow-bc fraternity members. David F. in England, Robert S. in New York, Howard F. from Florida, HK from Toronto all came up clear and are continuing treatments of some sort. And a new reader, Mike, begins his first BCGs next Tuesday. To one and all I say, force fluids and pee freely! Even if it hurts.

Only sad news is that HK will have to discontinue his BCGs. They were always horrible for him, and even reduced dosage was not tolerable. Last time a couple of weeks ago, at 50% dose, he got Epididymitis, and was told it was a side effect of BCG. If you follow the link here, you will see that it is more likely that his condition was caused by poor techniques in surgery or catheterization as it was to be caused by the BCG. He was told they would have to try something else, so we shall see what these Canadian docs come up with.

In the mean time, I shall embrace my discomfort with a good attitude and boldly go forward to the land of BCG, where I shall again become Biohazard Man!

Judgment Day #4 - ALL CLEAR - September 3, 2009

ALL CLEAR - two little words. So brief, so insignificant, and yet so meaningful. Trust me - I shall never tire of hearing that short phrase. This day now marks 15 months of being free from bladder cancer, and we all hope for many more to come. When I cross over 24 months, which should occur in June of 2010, I can begin using the term "remission." But not before then. It is dangerous to believe that this is all behind me. A lifetime of annual inspections such as the one I had today will serve well to remind me of that! In the meantime we shall take the good news as it comes. Our little "club" of bladder cancer folks has had a good few weeks. HK in Toronto had an all clear and just completed 3 very miserable weeks of BCG at 50% dose. Those Canadian doctors sure are conservative, at the expense of the patient's comfort! Then David F. in England went in for a full biopsy under general anesthesia and preliminary results are all clear, we hope the urine stream will be less rosy in the short future! It may be that David is done with treatments for a while - he figures the priority on his case must be low as the response has been a month already in coming. Today I have my all clear, and I look forward to 3 weekly BCG treatments at 1/3 dose starting next Thursday. Keith P. also came thru today with flying colors! On a side note, Robert S. had a mini scare with elevated PSA levels and got to experience a prostate biopsy, but he has lab results already and is also clear from prostate cancer.

The day was over early, if not quickly. The drive down took over an hour rather than the normal 45-50 minutes, due to the presence of road construction on nearly every road we used - a side product of the slow economy. No overtime or night work to speed up operations this year! So the road repairs are now going at a glacial pace. Arrived a few minutes early for a 9:15AM appointment and got to fill out new
paperwork due to my insurance being eaten by a larger company necessitating new codes an numbers and whatnot. Gave the normal urine sample an had about a 30 minute wait before Dr. Hopkins came in. We exchanged pleasantries and the inspection was done quickly - less than 60 seconds. The familiar burn going in and out - the scope is flexible, but not so much as the rubber BCG tubes! Dr. Hopkins said, "You're fine - everything looks good!" and was quickly gone. After the usual cleanup, re-dressing, and voiding of the saline used for the inspection we checked at the front to ensure our appointments were still good for the upcoming BCGs, and I was treated to a Levaquin as a prophylactic measure against infection. This drug costs over $21 per pill, and it's good stuff. Effective in the target area and no side effects like the cheaper stuff, I was happy to have it.

So tonight we shall have lamb chops and a nice bottle of wine to celebrate. In the
meantime I will do a few more emails and go back to bed. While the physical trauma of the cystoscopy is not so bad, there is always an emotional toll taken by these Judgment Days. As always, I hope you find these musings of mine useful, and I thank all of you for your support. Stay tuned for BCG updates (including blow by blow details for those with morbid tastes) starting next week!

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. Here is a partial bibliography. Be advised that the same citation may be listed under several headings, because the research results were relevant for each.

Adjuvants

Aging

Antibiotics

Antimicrobial Activity

Antioxidants

Anthrax

Arthritis

Athereoschlerosis

Bacterial Infection

Bone Marrow Injury

Burn – Oxidative Organ Damage

Cancer

Cancer – Carcinoma of the Breast

Cancer – Chemotherapy

Cancer – Ovarian

Cancer – Sarcoma

Cancer – Sarcoma and Melanoma

Cancer – Radiotherapy

Candida albicans

Chemotherapy

Cholesterol Control

Chronic Fatigue Syndrome

Coronary Artery Disease

Diabetes/Glucose Control

E coli

Free Radicals

Fungal Disease and Pathogens

Hemopoietic Recovery

Hepatitis – Viral

Immune Response Potentiation

Impared Immunity

Infections

Leukemia

Lipid Metabolism

Liver Damage

Macrophage Activation

Melanoma

Methotrexate Toxicity

Mycotoxins

Oxidative Damage

Parasites

Platelet Recovery

Pneumonia

Radiation Damage Protection

Radiation Injury

Rheumatoid Arthritis

Safety – FDA Classification

Spinal Cord Injury

Stem Cell Transplantation

Trauma

Tumors

Viral Diseases

White Blood Cell Recovery

Wound Healing

As you can see, 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 per pill, 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.

Bladder Cancer No Longer A Death Sentence - July 4, 2009


Below is reprinted in its entirety a news item on a treatment to consider for those where BCG is not effective, or if the cancer has spread into the lower abdomen and organs. I do not know this man personally, nor have I researched this treatment. But it might be worthwhile to look into if you are in need of more horsepower and wish to avoid cystectomy (which the man below unfortunately went through anyhow...) S.K.

PR Newswire June 30, 2009

SARASOTA, Fla. -- At 51, Charles Daniels had a lot to live for. A thriving construction business, a precious 11 year old daughter and a happy long-term relationship. When he was diagnosed with bladder cancer, he was determined to beat the odds. According to TMD, a medical tourism corporation, Daniels case is typical - he tried conventional medicine until they had nothing left to offer but a poor prognosis, and then went out of the country for alternative cancer treatment and is cancer free today.

Just before Christmas 2007, Daniels urinated blood. He went right to his primary care doctor, who did an ultrasound and X-rays, which were inconclusive. Suspecting an infection, his doctor gave him antibiotics. Within 24 hours, the blood was no longer visible. But a follow up visit showed microscopic blood in his urine, and he was sent to a urologist. A cytoscopy exam (where a small camera is inserted into the bladder) and intra-venous pyelogram (an X-ray with contrast that provides pictures of the entire urinary system) found bladder cancer. "I was shocked," Daniels said. "I was in perfect health, I felt good, and I thought I just had an infection."

This year, almost 71,000 Americans will be diagnosed with bladder cancer. According to the National Cancer Institute, the survival rate for stage III bladder cancer is 50%; stage IV is rarely survived. Symptoms include blood in the urine and frequent, painful or urgent urination.

Risk factors are smoking, chemical exposure to dyes, rubber and pesticides, chronic infections and parasites. Women undergoing chemotherapy and radiation for cervical cancer also have an increased risk of developing bladder cancer.

Daniels' oncologist recommended surgery to remove the tumor. While his doctor was cautiously optimistic, further testing confirmed the invasive tumor had penetrated the muscle wall. "My doctor wanted to remove my bladder, prostate and surrounding lymph nodes, and create a new bladder from my intestines. He said with this surgery I had a 90% survival rate. I wanted to live, and 90% sounded like a good number."

Daniels expected to wake up after surgery and be cancer free. But his surgeon found that the tumor had grown outside the bladder wall and surrounding lymph nodes tested positive. His survival rate dropped from 90% to 40%. Despite an aggressive chemotherapy program, his next CAT scan revealed three new tumors in his liver. He now was stage IV. At this point, mainstream medicine offered no hope of cure, and his life expectancy dropped to around nine months. The chemotherapy left him feeling exhausted and sick, and he suffered weight and hair loss. Permanent side effects included hearing loss, tingling in his extremities and 'chemo brain'.

Next, Daniels underwent Radio Frequency Ablation (RAF), a guided imagery surgery where a needle like probe transmits microwaves into tumors causing the destruction of tumor cells. The RAF destroyed the tumors, but he was told they would come back - there is no mainstream cure for his cancer.

Daniels then began researching alternative treatments. He sent emails with his medical history to clinics throughout the United States and Mexico. He interviewed doctors and talked to patients. When he asked about success rates, the answers he received ranged from "we'll make you more comfortable" to "complete remission".

Finally, he learned about a fairly new cancer treatment called SonoPhoto Dynamic Therapy (SPDT). This non-invasive treatment uses a non-toxic sensitizing agent along with sound and light to destroy cancer cells. Dr. Antonio Jimenez, medical director of the Hope4Cancer Institute south of San Diego, California in Baja, Mexico, has successfully treated bladder and other cancers with this program. Although this is a natural treatment without side effects, SPDT is considered a mainstream cancer treatment in 25 European countries. SPDT has proven effective against ovarian, prostate, colon, lung, pancreatic, liver and breast cancers, among others. It has not yet been approved in the United States.

Daniels decided to travel to Mexico for two weeks of SPDT treatment followed by a two month home program. "My doctors were not opposed to this," Daniels says. "They had nothing left to offer me."

"From the minute I walked into this clinic I had hope." Daniels says the doctors were upbeat and the staff was exceptionally caring. "The treatment was painless and there were no side effects. When I finished the program, my CAT scans were absolutely clear and my blood work was normal. I continue to have testing done every few months, and I am still completely cancer free. I stay on a maintenance program. I am going to watch my daughter grow up. I married my long time sweetheart. I only wish I would have found this treatment sooner."