Waldenstrom’s Macroglobulinemia – Some ideas for self treatment

Waldenstrom’s Macroglobulinemia – Some ideas for self treatment

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I was diagnosed with this disease in 2005 but they discovered that I was already stage 4 by bone marrow inspection, so I probably had the disease for some time.

  • It is a type of non-Hodgkin lymphoma.  My first symptom was a small lump protruding from my neck.
  • The cancer cells make large amounts of an abnormal protein that, over time, make the blood thicker.  This is the one major concern I have in attempting self medication.
  • It can crowd out red blood cells and make the person tired and weak.
  • Platelets in the blood can drop, leading to increased bleeding and bruising.
  • Blindness can occur.
  • Symptoms of stroke.
  • Heart and kidney problems can take place.

When I first read up on this disease the Internet said to expect to live 4 years on average.  I was shocked.  In 2011, I noticed that the average survival age is 6 years.  In 10 years 80% have died from first diagnosis.  My oncologist told me that he expects to keep me alive so I die from some other problem.  I thought that to be rather funny.  Because Waldenstrom’s Macroglobulinemia can bring on many other serious medical problems, he just might be too literal in his pronouncement.

I have had two chemo therapies, so far, that pushed back the disease.  My doctor tracks a lot of blood indicators but the one that seems to count the most is how thick my blood gets.  After a chemotherapy treatment, the thickness of my blood improves but over time it seems to follow a large “U” shape trajectory.  It goes down, levels out a bit and then goes back up.

There is no cure for this disease and because it is so rare, very little research is being done to cure this form of cancer.

My doctor gave me only one piece of advice.  I can drink red wine.  His thinking was that it might help clean the arteries and veins so as the blood got thicker, it would more successfully travel through the body to all parts.  But, in 2011 he told me that I can drink any alcohol I want, just in moderation.  “Won’t hurt” he told me.  Maybe he figures that I am getting close to the 10 year death threshold that I could even start taking up sky diving and bar hopping.

My self treatment is just my attempt to thwart the progression of the disease by using common sense, to the best of my ability, and not trying anything too radical or dumb that might get me into trouble.  I wish to share my personal thinking with you, if you have this disease.  I will try to list all the various items that I use but I wish to really call your attention to only one, working out at a gym that is well stocked with free weights, cardio machines and weight lifting machines.  Doing a strenuous workout, I believe, has vastly improved my longevity and quality of life.

Gym  (This is the most important advice I can offer and I sincerely believe in its benefit.)

To improve my blood flow to all parts of my body, I go to a gym EVERY DAY and work out in this fashion.

  • 30 minutes of light cardio which may include treadmill, elliptical, stair step, etc.
  • 15 minutes or more of heavy weight lifting to the point of muscle failure.  I am convinced that I must push the repetitions and increase in total weight that I pump to the extent that I can no longer do one more repetition really is a “cure”.  I figure that this forces blood through even the most minute diameter vein.  I do not want to loose my vision so straining the body to move a heavy weight, you really feel like your pushing blood to the farthest reaches of your body which is what I want to achieve.
  • I take a treadmill class where the instructor has us run as much as five minutes at a time at high speed and repeats this a number of times.  She also makes us do hills.  I really think running is most beneficial.  I noticed that staff trainers do this as part of their own conditioning and have their customers do this exercise also.  It helps endurance.    I noticed that just after half my routine, my hearing improves a lot for the time I am working out.  I even have to turn down the volume on my iPod to a more comfortable level.  I do get pains in my hip and legs but the running removes the pain over time.

The above regimen that I listed above is only an example to show you how much time and effort you should consider devoting.  I recommend that you FIRST visit your doctor and tell him or her your intentions to begin to work out.  If you are beginning to attend a gym for the fist time or you know you are out of shape, begin slowly.  Consider finding a good trainer to guide you.

I try to eat sensibly and try to keep my weight down.

Smoothy.

In my opinion I do not see this as having any direct impact upon W.D.  I just list this because I do think the wheat grass does offer benefit.  My wife likes having a smoothy to take to work in the morning so while I make her one, I make myself one with the two additions of flax seed oil and wheat grass.  I make a smoothie with the following ingredients:

  • Few cubes of ice to make the drink cold.
  • Teaspoon of liquid calcium.  Calcium is also necessary to help thwart prostate cancer.  I also was diagnosed as having bone loss.
  • Banana
  • Cup or two of mixed berries or strawberries.
  • Yogurt
  • Flax seed oil, (I stopped adding this), about 1 tsp, for the omega 3 benefit.
  • Wheat grass, powder form, one spoon full but less if I make a smaller drink.  I buy Pines brand.  A little is all you need. The wheat grass cleanses the bowels very effectively.  It seems to create a propellant component.
  • Fruit juice.  My wife likes thick smoothies so I add only just enough to make a thick drink.

The smoothy is blended in a Vitamix blender, an expensive unit, but the best blender  one can buy, in my opinion.

I do take pills and health food items as listed next.

Lutein

My ophthalmologist recommended that I take this pill to prevent age related macular degeneration (AMD).  Because blindness is a real possibility with WD, I believe this is a very important pill to take every day.  http://www.luteininfo.com/

Aspirin

I only take one if I hear pounding in my ears that signify that I took too much salt and my blood pressure is high.  I have seen people take low dose aspirin and they suffer from broken blood vessels, typically viewed on their arms and hands.  I simply do not want a broken blood vessel take place in a vital organ like my brain.  I carry low dose aspirin, 81 mg, with me almost all the time to offer heart attack protection. I have small pill jars in all the family vehicles and beside my bed.  A nurse told me that if I think I am having a heart attack, to take 4 of these low dose tablets and get to an emergency room fast.

Longevinex

My sister pushed me toward this product.  It is dry concentrated wine in capsule form.  It is very expensive.  I take it every night.  I have noticed that my lungs fill with air to the point of almost hurting when I take this pill, a very good feeling.  When I stop taking it my lungs do not seem to fill completely.  http://www.longevinex.com/

TIP:  This product typically goes on sale just before Christmas.  I save money by buying a year’s supply at this time.

Bilberry

I can not remember how I found about this product.  The story goes that the British pilots during WWII, who used bilberry jam prior to their flights against the Nazi’s, reported that there eyesight was improved.   I can report to you that my dreams at night are often times spectacular, with so much detail and at times very intense story lines.  A friend of mine has a wife with Waldenstrom’s Macroglobulinemia Disease and she is partly blind from this disease.  I will buy any product that has been proven to improve eyesight.

Biotin

I take 5 mg.  It’s claims are better hair scalp and nails.  The lady that cuts my hair recommends this for hair growth.  It’s benefit just might be from better blood flow.

Garlicin

I take Nature’s Way, 350 mg tablets.  This is a smart release garlic.  The tablets are coated to get by stomach acid.  There is no garlic breath resulting from taking this.  Taking garlic offers  a lot of benefits, some of which might help WD.

Gensing  (I stopped taking this because I did not think it did any good.)

When I heard that this gives you more energy, I decided I needed it.  I take one pill every day.  The particular product I take is Action Labs Powermax 6 X.  The pill jar recommends taking two capsules, but I take only one each morning.  If I detect any benefit, it is very slight, if at all.  It just might be doing more placebo than providing any real benefit.

Eat Fish frequently

My research has shown that omega 3 foods are good for you and seem to offer rewards for possible future problems I might have.  I try to eat Salmon and I love tuna sandwiches and sardines.

On my key ring, I carry a bullet size and shape metal pill container that one has to unscrew to get to the contents.  I have 2 baby aspirin and 1 Longevinex pill in that container.  I have given these devices out to friends that I think might be susceptible to heart attacks.

Summary

If you have this disease, I sincerely wish you the very best.  If you have found any self treatments that are not listed here, show promise and that might benefit others, please share with us.  Please do take the time to work hard at keeping in good physical shape.

It is my opinion that there are definitely worse types of cancer to have.  You should have, I hope you do have, quite a few years left to enjoy this absurd existence we call life.

 

Updated May 28, 2016
Updated again July 27, 2021

Customer Interface Is Friendly But Slightly Flawed Process At Santiago Canyon College.

Customer Interface Is Friendly But Slightly Flawed Process At Santiago Canyon College.

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Fall 2011: A student with a slight medical problem e-mailed her teachers two days before school notifying them of her problem. She had no idea she could not attend the first day of classes at Santiago Canyon College, a junior college in Orange California, due to this problem. The first day of classes she immediately e-mailed the faculty identifying the medical problem as being the reason she missed going to class. Two of the faculty, allegedly, did not read the first e-mail and gave the student’s classroom seat to other students. The faculty claimed they did not have enough time to read all their e-mail.

The Disabled Student Program and Services at Santiago Canyon College has “amazing” according to the student; helped her in proper interface with the college as best as they could.

We do rate this college extremely high for friendliness. It seems that the college president has mandated a friendly policy which is most apparent when you interact with any of the college staff and faculty. It is our opinion that this college may need to be a more lenient in dropping students so quickly with medical conditions.

Wine Review: Renditon 2009, Zinfandel

Wine Review: Renditon 2009, Zinfandel

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We recently sampled a Rendition 2009, Alexander Valley Zinfandel.  The flavor seemed on par with what I expect paint remover to taste.  It was very harsh, totally lacking any subtly and any detectable positive flavor.  There was absolutely no enjoyment from sipping this backward off “wine”.  Two Buck Chuck is a step up from this rasp drippings.

iCal Is Slow Showing Spinning Color Wheel.

iCal Is Slow Showing Spinning Color Wheel.

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Right after upgrading my Macintosh laptop to Lion I found that iCal, the Mac calendar, was so slow.  It was really aggravating.  It happened with every change I made to my calendar.  I guessed that the reason was my calendar was uploading to a remote server.  I did have a .Mac account so I decided to look for this cause.  I did find it to be the case.

Solution:

  • Open iCal preferences.
  • Choose Accounts.
  • If you see any listing showing “CalDav” select it.
  • Select Account Information.
  • Note the line listed as “Refresh Calendars:”
  • I found this to be set as “Push”.  THAT IS THE PROBLEM.  Change it to anything else, but not “Push”.  I chose every 15 minutes.

This completely solved the problem for me.

Why Non Rich People Vote Republican – Some Ideas

Why Non Rich People Vote Republican – Some Ideas

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A very common question is asked by many people and at many times.  Why is it that individuals that are not rich support a political party that works for only the rich and not them?  I put forth that there are no simple answers.  It may be that each individual falls into one or more categories listed below.  Also, individuals might not follow logic and try to work for their best interests and thus do not fit into any of these categories but are just so disconnected from the political process making a totally ignorant decision while voting in the voting booth.  Let me list the possible options for your consideration:

Education  Lack of proper education may lead to ignorance of political and economic issues.  The ability to connect the dots is assumed as just one of that many end results of a good education.  There are a lot of reasons why this mind analysis was not taught in school and not appreciated or practiced in real life.  Poor school performance, lack of cause and effect training and practice in this methodology may have been lacking.   Connecting the dots is typically an assumed outcome of a good education but is not measured as a school activity or achievement and may be missing in some individuals.  Oddly enough I found that individuals that can troubleshoot a problem in engineering which really entails connecting dots in that field but then can not carry that learning over to politics.

“We connect the dots in ways that take advantage of the skills, perspectives, and commitments we already have.”
http://blogs.greatschools.org/greatschoolsblog/2011/06/connecting-the-dots-from-nursery-school-to-greatschools.html

Reference: http://www2.edc.org/makingmath/mathsettings/connect/ConnectTheDots_TeachNotes.asp

Simplicity  Individuals need simplicity, simple answers in a very complex world.  Here are possibly two types of individuals.  The first is simply not being that bright about politics and economics.  This individual is frustrated and anxiety ridden about the mishmash within politics and economics and avoids the complexity by turning toward Republican values which are typically simple.  The second individual parachutes in from time to time to delve in political thinking because their life is so full of other adventures and concerns.  They are not stupid but they might be about the issues, they just don’t take the time to more completely understand what the nation is facing at that particular moment, make a snap decision that might not be in their best interests.

Stability  Individuals need regularity and stability in their lives.  This is somewhat similar to the simplicity factor but different slightly as it covers a slightly different personal need.  Some individuals avoid complex living patterns and seek  and look forward to routines that offer comfort.  Comfort can be found in simple endeavors.  This individual is often times a the religious type, gravitating to the regularity of following a well defined program of behavior.  They typically follow religious preachings that there can only be marriage between a man and a women, there can only be one race, white, there can only be Christianity, there can not be abortions, no stem cell research on fetus tissue, etc.    Here in is another added benefit, a symbiotic relationship that religion and politics affirm one another, quite a powerful combination for the Republican Party to posses.

Facts do not matter. Believe it or not, there are individuals that just will not process facts and information where the outcomes result in benefit to that individual.  The person who smokes knowing it will harm and kill is a simple but extreme example.  Individuals simply will not follow activity that benefits them from time to time.  Substance abuse is a extension of the smoking example.  There it the parent and peer factor too that propels individuals to hug a particular political thinking.  There is a very large population of children from parents that instilled a belief that the Democratic Party is socialism.  I know of one individual that was told by his father  that unions are evil and he has turned toward conservatism ever since.  One web site puts forth the view that some people are indoctrinated.   I was told by one father that he would not allow his daughter becoming a Democrat so long as he paid for her education.

Bubble of ignorance.  Some people float in a bubble of ignorance, not because they are stupid but they do not read newspapers or news magazines, thus pretty much are unengaged with the political process, just don’t feel the need to study issues.

Nuance   Some individuals seem incapable of detecting and appreciating nuance.  This can be any age group.  They only value simple and large issues and can not or will not core down to some important but important short lived events.  Large issues are often times simple for most people to understand.  The loud simple issues function the same as bullet points do in a document outline or work the same as a house frame before the stucco siding, fill in and detail are applied.  For example, the issue of timing of a second recovery effort is critical for stimulating another economic recovery.  The first Obama stimulus package did work but stalled out after a while.  The government has spent billions in economic stimulus which rankled a lot of people, and for good reason.  The Tea Party views the huge expanding debt as ruinous for this country, which it can be if not applied correctly.  Economists are saying we still need to stimulate the economy a second time and once the economy is on the mend, start the process of cutting back government expenditures to swing back to a better and responsible budget.  This process of pressing on the gas TWICE and then applying the brakes is not appreciated by a lot of people.

I will be rich.  Belief that some day I will be rich was told to me by a promenade lawyer as being what he believed to be the reason why the poor gravitate toward conservatism.  The huge number of people who play the lottery each week just might populate this category.

Romantic   There are romantic individual that embrace the chivalry aspect of hugging the US Constitution, a sort of patriot to the core self presentation and thinking it leads to self preservation.  The Republican Party typically stands closer to the original meaning of the Constitution, not allowing interpretation.  Counter to the Republican party is the Democratic Party which is thought of as being progressive, wanting change to improve individuals lives which may seem to sway a bit from rigid interpretation  of the Constitution.

Business and profession beliefs.  Some individuals follow certain business beliefs.  Police and engineers like order and typically vote Republican.  But the recent attacks by the Republican Party against police and fire unions and laying off thousands of public protection services may have changed that trajectory.

Ethnic propensity   There may be ethnic propensities that favor the Republican Party.  Individuals from foreign countries wishing to be accepted as American with less problems, might gravitate to the right because the right has had a history of violence against non believers.  Separate but within this category are the immigrants from Vietnam who escaped communism, an extreme form of socialism. We might see more of these individuals choosing the Republican Party values.  Republicans have been seen as being against communism than the Democrats.

Cuban Americans also vote Republican because of Communism.  “In the Democratic Party’s economic program they hear echoes of the communist countries which they fled.”   People equate the Democratic Party with socialism because they think in terms of helping everyone, not just a small constituency.

 

Updated repairing broken links 3-6-19
A Partisan Joke Making The Rounds

A Partisan Joke Making The Rounds

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I am trying real hard to be equal in my research, trying to see both sides, and feel immense responsibility to get it right in my analysis of political situations.  But during the day I do run into this and that opinions that do absolutely nothing to clear the air or help the situation. This little joke just sort of puts forward a lot of what I am coming to believe and I have to admit, it is a moment of enjoyment to read it.

Did you know that, the words “race car” spelled backwards still spells “race car”?

And that “eat” is the only word that, if you take the first letter and
move it to the last, spells its own past tense, “ate”?

And if you rearrange the letters in “Tea Party Republicans,” and add just
a few more letters, it spells: “Shut up you free-loading, progress-blocking, benefit-grabbing, resource-sucking, violent hypocrites, and deal with the fact that you nearly wrecked the country under Bush and that our president is black, so get over it.”