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WebCafé home arrow Tales from the Trenches
Pat's Personal Rules for Stimulating the Immune System Toward Survival PDF Print E-mail
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Eat, Drink and Laugh Yourself Toward a Healthy Attitude/Body by Pat Silveria

In the begining, it was good...the body ran on adrenaline. Then the shit hit the fan. Fat over fifty, diabetic (type II), female, peeing blood, cystitus without  infection.  Ongoing........... f

When you quit smoking after 30 years of 3 paks a day (I was a tax accountant) and have a history of heart attack, blown ulcer, stroke, polio, 6 breast biopsys, hysterectomy, etc. etc. and you have gained 40 pounds with the tobacco cessation-you are still alive and approaching 60-cancer is not in the vocabulary. But peeing blood is not a healthy condition.

When it first happened in late '93, it was off and on and I was pulling nails for our new building, so thought it was a no big deal, probably pulled something.Was checked for bladder infection, nothing, just blood in urine, more than necessary. Then the cystitus started without infection and more blood.We did blood work and a 24 hours collection of urine and nothing.

My GP consulted the urologist and he said "Cancer", and opinionated me said "Bull." Further non-invasive tests also were negative. I spoke to my herbalist and as he knows me best, he said that I should take the appropriate herbs, just in case. Antioxidants and tumor chasers. He also had two very good Bladder Disorder Formulas from China that saved my sanity.

Serveral months later I had blood in urine again without infection, so I began the bladder formulas, which stopped the discomfort and bleeding within 2 hours and I was fine for 6 months. I repeated this process every time I began peeing blood and the symptoms would cease. I would take it for 8 months and it started again and then a sonogram showed I had the the healthiest looking bladder and kidneys the tech had ever seen in an old lady. However, there is blood in the urine again.

More blood workup, urine collection, Chinese Bladder formulas and it stops. I continued non-stop for 3 weeks and couldn't be off more than a few days and it was back. I gave up and went to the urologist for a cysto.

Pat Meets the Great Non-Communicator

At our initial consultation prior to the cysto, the uro told me he would find bladder cancer and expected it to be well defined after 5 years of symptoms. He spent less than 5 minutes with me, doing all the talking, not happy with me and as he had been talking to my GP for five years, he didn't seem to need to talk to me. Just show up next week for the cysto (does this story sound familiar to anyone?).

I have the cysto and he discovers TCC grade 1 to 2, non-invasive. There seems to be two 2cm papillary tumors that are cut out for biopsy and one 2cm CIS he burns out as he explains what he is doing. No complications other than getting the bleeding to stop at the site where he did the cut and burn.  Mental discomfort rather than physical. Now I knew it was cancer, only not how bad...

All this found in the lower left portion of the bladder (all of my TCC has been located in the same area). The remaining portion of my bladder looks healthy. Why?

The doc is at a loss. After he received my pathology reports, we finally sat down to talk and I listened as he said,  "No one goes 5 years with your symptoms and doesn't have invasion and mets, I would have given you 6 months.Your diagnosis is TCC non-invasive grade 1 to 2." Nothing said about the CIS as it wasn't biopsied, remember he burned it out but was sure about what it was.

When I told him that I had been taking Suma and  the chinese bladder formulas, he just laughed, but said to just make sure I knew what I was taking.

When I heard the non-invasive cancer diagnosis, I was so relieved. When he told me that all we had to do was wait and watch, I was relieved. I knew that without the herbs I would not have been so lucky.

So I began my first year with a 'wait and watch' cysto every quarter. I would be just fine. And just to make sure, I added Essiac Tea and Pro-Essence capsules to the daily intake, along with 3,000 vit.C per day.

At 9 months post diagnosis, family stress escalated like 4th of July just as I returned from China. I dealt with Mom's alzheimers, Dad in wheelchair, and all the family business' stuff and went in for my first year aniversary. There were fireworks alright, the beast was back....

We begin with the TUR and the six weeks of BCG. I did well, no complications from the TUR, 2 more TCC papillary 2cm each and still non invasive. God, how
lucky can one woman get. The BCG went well, just tired and little achy. At this time, I added Colostrum twice a day and red clover and astragalas to the daily regimine.

Now one of my best buddies is dying from bladder cancer and I didn't know it. He hid it well, he came to see me on the way home to die, he left me a legacy; Get aggressive, do not wait and watch, look where it got me...

Wake up, Pat. I learned to use my Internet for something other than a play thing. I began to research the medlines and all the cancer sites, looking for the answer to why and what and how and oh, my, God, now what...

I kept looking for the answer to how to cure this.....wasn't there an obscure paper somewhere that would give us the answer of what we could do to treat this? I can't remember ever being so angry and out of control.Why is control always an issue with us 'type A' women?

I have now discovered DNA testing for P53 and P21 and am questioning the doc. We have an agreement to disagree, but compromise on P53. I am still too stupid to argue and he is losing patience with all the abstracts I am bringing him. I am looking for a prognositc test that will give us some accuracy for "is it back or is it not back?" in between the cystos. We find the BTA (bladder tumor antigen) test. Expensive and 65% accurate.

In for my fifth cysto after BTA test shows negative-and the beast is back. So much for the BTA. Doc says I am one of those people who tests false negative.  What the heck does that mean. Maybe my herbs are keeping this contained?

Now we wait a week and begin BCG maintenance and I am still researching and waiting for the DNA, which is being done from the orginal biopsy tissue prior to any BCG. Blood work shows my immune system is at it's peak and looks like my body is not going through turmoil. Doc says whatever it is that I'm doing, I should keep doing it. He says it with some belief, but mostly in jest.

I received a gift of Dr. Siegel's wonderful books and with these I begin to find the wisdom I need to fight this disease. Then I discoverd that I still didn't even know what questions to ask.

When I approached my doc with another abstract or an idea, I got terse one-word sentences or the papers tossed back at me, with, "I know about that, I don't believe in it, find me better stats".

I spent more hours on the internet compiling everything about my type of TCC and looking for prognostic markers and longevity stats (especially those), treatment protocols, what's new, what's old, chemo for future reference. My notebook is now 8 inches thick.

I was obsessed and found an online bladder group and began to share and learn from others and the more I learned, the more I bugged my doc until he began to take notice of what I was bringing him and we began to connect. I found the NMP22 test, he vaguely knew about it. We now use it and it is accurate.

Now I know I have a poor DNA, so I must keep my immune system strong at all times. All of my searching has taught me one thing; there is nothing between you and superficial TCC but your immune system, guard it and feed it.

So now I am ready for the next Cysto and...the beast is back again. Two more 2cm papillary TCC, still non invasive and grade 2; how is this holding? Three more weeks of BCG. Here we go again, 80% recurs are normal says the abstracts, why worry. I worry because my DNA is not cool. BCG is still not bad, just tired and  achey. At this point I get the bone scan and sigmoid, just to be sure...all clear.

I ask for a CT scan and am told, only if invasion is shown.  I thought CT scans show invasion. Doc says TCC superficial loves CT scans, it helps it grow. CT scans only good for how far the invasion has gone. This is beyond me. How the heck do we know when there is invasion, says I?  He says by the biopsy of the tissue taken during TUR. That means I have to wait till it invades to know it has invaded. No X-ray that will show invasion. Okay, I think I understand that.

Get through Christmas and go for next Cysto and the beast is back. Doc is still in the 'No big deal' mode. I ask what to do if it becomes invasive and he says "Why worry? If it does, we just chop out your bladder." This is the last straw and we aren't going to get to that "chop out your bladder" stage if I can help it.

Doc knocks me out for the first time to do the January cysto and retrograde dye X-ray, as I am also allergic to the dye, we go easy. He is afraid there might be TCC in the kidney seeding the bladder, as all TCC is found in the same quardrant of my bladder. Everything looks clean in and above the ureters, but there are two spots in the bladder again, not big, only 2mm, and he burns them out. Too small to cut out, says he. When I come to, I am so angry that he didn't cut them out and send them to the path lab. We have now lost track of grade and don't know for sure if it's invasive. Wait a week and begin three weeks of BCG.

At this time I discover the Oncovite (mega-dose vitamin) and Dr. Lamm's research. The Oncovite now becomes part of my daily intake as well.

In mid March I leave for China for consultations with two of the top onocologists in China, one Western MD and one Chinese Traditional Medicine. The diagnosis is the same as my great non-communicator's, and they agree with what I have been doing, but suggest I add the immune stimulant boosters that they use. Kanglaite IV for 20 days and TCM herbal brews. This I do, as I went China to find out what else I could do to keep the immune system working. They also said to keep up the BCG maintenance.

Upon my return in 30 days, I went in for the NMP22 test and it showed nothing there. Do we get excited?

I told the doc what I had done in China, showed him the info on the Kanglaite and told him about the weeds and things. He laughed. I followed him into his office and told him I would have the last laugh. He told me that if it saved my bladder and my life then, "Go for it".

One week later, Cysto. All rigged for TUR as we all expected the beast to be back, as usual. Nothing, not one red raised area. The beast is gone...

We wait a week and begin the BCG once again. So here I am, 16 BCG treatments later, feeling like a truck ran over me, but elated because I finally found what put me over the hill. My immune system boosted the TCC into orbit. Who knows how long it will be gone, but I am sure going to work at keeping it gone. I continue with all my herbs, weeds and things and keep fighting. I think we need to become warriors to drive this beast totally out of our bodies. It is now June 6, 1999.

Wendy asked me to share my personal immune system combination of minerals, vitamins and herbals, Chinese Herbal formulas and nutrition tips as well as whatever obnoxious combinations of twigs and weeds and intellect stimulators I have found to work for me.

My research led me to the conclusion that the immune system had to be peaked at all times to deal with superficial TCC; anything to keep it from becoming invasive. So let's discuss diet first, remembering that the medical community readily accepts some of this information, but not all. Please find what works best for you personally and check with your doctor before making dramatic changes to your diet. Please read and research for yourself, as I have fine tuned this for myself. Each person has their own dietary needs based on body type and medical conditions.

Some Basic Nutrition Information
Do’s:
Drink 10 glasses of chlorine free water per day, or more. But, any 10 glasses of fluid will do (to cut the incidences of bladder cancer, so says the research).
Eat soy products in any form.
Eat green leafy vegetables, carrots, broccoli and others, lots of fresh fruit.
Cooked tomatoes only for proper enzyme breakdown.
Keep the body in alkaline pH balance.
Read the Vista Heights site until you can recite it in your sleep and choose your grocery shopping by the list provided.  This is my food bible.  http://www.islandnet.com/~emorgan/articles/PH.html
Stay slender as cancer hates thin, and exercise as often as you can the more the better-with your doctor’s guidance.

Don'ts:
Avoid sulfites as they can cause urethra constrictions. Read the labels.
Avoid sweetener chemicals, foods that are full of chemicals and colorants such as non-fat modifiers.
Limit your intake of red meats and protein fats.
Limit your intake of refined sugars and starches.
Limit your intake of vinegars which can cause your system to become out of Yin/Yang balance and your body could become more acidic rather than alkaline. It is OK to use vinegar, just not in great quantity and not every day.
Don't smoke and don’t stay in an enclosed area where you are exposed to second hand smoke, your bladder cancer loves smoke.
Don’t weigh more than you should, as cancer loves fat.
Don’t become sedentary unless doctor orders it.
Don’t mix tomatoes, acid food, wine and vinegars in your foods all in one day.

Vitamins
Caveat: When taking high doses of vitamins and herbs always limit your intake to 6 days on and one day off. This provides better absorption and less chance of becoming toxic. Please check with your physician.

If you are not taking Oncovite, I have found the following daily doses to be well tolerated (for myself, and the research says these are doses which are tolerated by normal sized people);
1,000 C 3x/day
1,000 E 2x/day
500 Lysine 3x/day

Read this;
Vitamin A derivative may offer cancer hope: (4HPR)

If you are taking Oncovite, take the following vitamins;
1,000 C at bed time only
500 Lysine 3x/day
2 Oncovite at the beginning of breakfast
2 Oncovite at the beginning of dinner

Herbs for immune system stimulation to be used in conjunction with the vitamins:
SUMA, 520mg 1 cap 2x/day
Astragalus Root 400mg-1 cap 2x/day
Colostrum 480mg-2 caps each on empty stomach early in the morning and mid-afternoon
Red Clover 430mg-1 pill 2x/day
Garlic 300mg 1x/day (tumor reductions proved by MD research trials
Essiac Tea (Cassie tea) brewed with distilled water and taken on an empty stomach 2x/day
Loose green tea, hand brewed.

I believe that all of these had a bearing on keeping my TCC superficial ((prior to Oncovite). It wasn’t until the spring of 1999 that I requested help from my friends in China and received what I believe hit it all so hard that the combination knocked the TCC totally out of the ballpark. I have abnormal P53 DNA so we didn’t expect anything to take it out, just keep it superficial so we could keep removing it. I will continue my BCG for at least two years on the advice of western and Chinese doctors.

In March/April 1999 I received 20 days of IV drip of Kanglaite from the top western medicine cancer doctors in Beijing. From the top Chinese traditional doctor in cancer research, I received weeds and things. On my last quarterly cysto, no cancer anywhere. If so, it would have been my 5th TUR.

A few more words about vitamins and herbs, and this is very important. A cheaper brand doesn’t make it the same or just as good, there are many ways to make a supplement just as there are many ways to mix herbs. Know your products, research books, particularly information on what is the best product to produce the vitamin and which parts of the plant are used in the manufacture of the final product.  If the efficacy has been compromised, you have wasted your money.  If the best potency for a supplement has been found to be from fruits and roots, then do not settle for anything inferior...educate yourself. Do not be fooled by fancy packaging and sales pitches. Ensure that what you are buying has the ingredients clearly stated. Read the fine print. Develope a good rapport with an herbalist and health shop to help educate yourself.

Some clarification on herbs; the Colostrum is 100% bovine and pure and safe. It is used to stimulate your whole immune system. You cannot buy an odd brand, and I’m suggesting New Life Colostrum capsules http://www.symbioticsllc.com . This product is manufactured properly to hold the immune response.

The Pro-essence and Essiac Tea by Flora. You can check out the ingredients and read about the effects at the alternative herbal med sites found listed elsewhere.  There is so much information on these products.  Note: when I’m taking the Chinese weeds and things, I do not take the Essiac Tea or Flor Essence or any other herbs as some are included in the brew and I don’t want to overdose.

The herbal formula that I used to beat back the TCC prior to the diagnosis is still available on the shelves of most Chinese pharmacies and good herb stores that carry these formulas should have it. Together they can knock out cystitis with or without infection, but are not to be used as a cure for TCC or hold it back, this was a fluke, possibly in combination with all the rest I was using, but I can vouch for it’s effectiveness and have used it between BCG quarterlies when necessary. The Chinese description is as follows:

Product name:  Shilintong (pronounced sherleentong)
Formula:  preparation of desmodium styracifoli
Dosage:  6 to 10 tablets 2 or 3x/day
Indications are for calculus of kidney or bladder capable of excreting urine and clearing away heat and good curing the urination disturbance. Anti-clotting and capable of dilating the smoothe muscle to make the calculus easy to be transferred and expelled out.  No adverse reactions.

Product: Shui Sheng Huasheh Yuen
Indications:  All of the above plus cystitis; dosage is 5 pills 2x/day
Add to the above plus making a smooth bladder interior and nourishing the kidneys and bladder.
Ingredients are in Chinese, but I trust it.

Take all vitamins and herbs with warm water to speed up the distillation in the body.  Follow the directions, if indicated to take an herb or vitamin on a full stomach, do so. This has to do with absorption rates.

Note: do not take anything other than baking soda and water during BCG to quiet the burning or screaming bladder unless prescribed by your doctor. You could interfere with the BCGs ability to irritate the bladder sufficiently to stimulate the immune system. Any ongoing cystitus (without infection), mild urgency, etc. are symptoms that may come and go in waves and could be part of the possible afteraffects of the treatment, but it would be best to check with your doc if persistent
symptoms continue.

The Kanglaite injection IV drip I had in China is not available in the US as yet, but I’m working on finding it in an English speaking country. Pharmacology shows that Kanglaite injection has the action of inhibiting the growth of many kinds of tumors. It can enhance the immunologic functions and has certain effect of remitting pain as well. Occasionally allergy to lipid may occur. Drug should not be applied to patients with serious fat metabolism disorders. I’d be happy to send out a copy of the full text description, send me a self-addressed and stamped envelope. And if you want my Rx for the Chinese weeds and things, I will send a copy of that as well. I’ll send you my snail mail address.
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I believe the immune system is key to keeping the beast under control and it takes all of you, mind, body and attitude to do it. Good luck in your quest for information and healing. If I can clarify any of this information, just ask. Please remember that this is my protocol, it is working for me, may not work for you but it is worth looking into.

Selected Readings
My reading list comes from what I have found to have given me the best boost to my attitude and given me the heart to pick my sorry butt off the floor and start on the true road to living with cancer.

Books
Love, Medicine and Miracles, Bernie L. Siegel, M.D.
Peace, Love and Healing, Bernie L. Siegel, M.D.

From  Love, Medicine and Miracles:

 “Patients very enormously.  Some will do almost anything rather than alter their lives to increase their chances for a cure. When I offer them a choice between an operation and a change in lifestyle, eight out of ten say, “operate.”  It hurts less, that way all I have to do is get a babysitter for the week. I’m in the hospital. At the other extreme are those I call exceptional patients, or survivors.”

1. The one who does everything the doctor tells them to do and takes all the medicine without question.  As soon as the doctor says, change your lifestyle, the patient cannot do it. This patient is not a survivor.

2. The one, who says just give me the magic bullet to cure it, I don’t have time for anything else.

3. The one who questions the doctor on every point, asks why, demands other opinions and won’t settle for, “I said so, so that is how we handle it.”  This patient is a survivor..

After Bernie Seigel, I would suggest you read The Bible or which ever book of faith pertains to you, if so inclined.

The last two books on my mandatory reading list are compilations of very inspiring and poignantly warm, funny stories:
When I Am an Old Woman I Shall Wear Purple
If I Had My Life to Live Over, I Would Pick More Daisies.
(Papier-Mache Press, Watsonville, California)

You gentlemen will enjoy these last two just as much as the ladies, but you will  enjoy my movie list even better. The reading list got me started and then I remembered laugh therapy so I rented Jackie Chan movies. As a 15 year veteren of Tai Chi, I appreciated his great martial arts special tricks and laughed myself silly.

My friends send me very funny and rude jokes on the internet for my daily laugh. You need to keep laughing, keep your heart in tune and mellow on your personal road to conquer the beast thru education, laughter, light and love. Above all, be pleased with life as it is, as it only gets better.

Diary dedicated to the absent beast: Dateline Oregon 7/29/00:
I have now logged 3 more trips to Beijing since the last posting to Tales from the Trenches and earned 3 10,000 frequent flyer mile certificates for China, completed the requisite 23 BCG treatments, 40 days of Kanglaite IV days and proudly proclaim18 months free of the beast...I would say that this has been a year of large achievements.

Each trip to Beijing had a visit to both doctors and a new RX of weeds of things to bring home.....still am not sure what is in that nasty smelling concoction, but what ever it is my body loves it.

I did have a scare at my last cysto on 7/7/00, doc found 2 2mm tumors he thought growing in the same spot as always and removed them for pathology and was sure they were low grade I/III, not worry, says he (pray for inflammatory). After a week of the terrors, the pathology came back inflammatory growths. I have been assured it was caused by my BCG treatments and that I should cut back by 1/3 the next maintentance round of 3.We go to 6 month cysto and 3 weeks BCG at year end, if still clear, it will be another 6 months to the next cysto.

My body still feels fatigue and joint pain really flares up occassionally, but this to shall pass. I do know that the last round of BCG in May has left my bladder more irritated than usual, hence the two growths in the bladder that were mistaken for the TCC. When we thought that the beast was back, I researched and discussed with Doc Lamm just what the next step would be and it was a unanymous decision to go with the InterferonA with reduced BCG as the next step. Thank the stars that this is now not needed, but it was a good exercise in learning and planning for possible future reference; it takes the pressure off of "whats next?".

So for now, I continue with my chinese herbal RX, my vitamin regimine, diet and try to avoid the stress (yeh, right. I was also given a very special accolade when chosen to be a co-Grand Marshall for our annual American Cancer Society Relay for Life. This gave me the opportunity to speak out on TV and in the print media as well about the importance of the new sciences and biomarkers and the chance to offer some educational materials to our cancer community.

To see Pat's website about her China tours, click here


                      Pat Silvera

Last Updated ( Friday, 14 November 2008 )
 
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