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