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As a myeloma survivor I think that newspaper articles like

"New Cases of Cancer Decline in the U.S."

do a disservice to cancer survivors everywhere.  The headline should read "Myeloma cases INCREASE in the U.S.

"Some types of cancer are being found more often, the report said. Among men, incidence rates increased for cancers of the liver, kidney and esophagus, and for melanoma and myeloma"

An article talking about causes of myeloma like the environment are far more important.  Boring perhaps but more important.

The International Myeloma Foundation Identifies Potential Link Between Genetic Pathways And Environmental Risks For Myeloma

Like this myeloma blogger, i wonder why more oncologists are not studying issues like

Chemoresistance, Bcl genes and supplements

" …stumble upon a possibly useful connection/synergy between the natural and synthetic worlds, a connection that has the real potential to help cancer patients at the very least with the toxic side effects of chemo and possibly even with the treatments themselves (by making the tumour cells more susceptible to these drugs, e.g.), then why the heck don’t MORE cancer researchers devote MORE time to investigating this type of synergy?"

I take resveritrol and curcumin daily.  I have not undergone any conventional therapies for since 1997 when I was told that "there is nothing more that we can do."

The only significant finding in the first article is that smoking rates are falling in the U.S. and therefore cases of lung cancer are declining.  Good.  But lots of other kinds of cancer cases are increasing.  And the environment is the cause.  And oncologists aren't helping.

David Emerson

http://beating-myeloma.or...

Most myeloma survivors, at one time or another, wonder what caused their myeloma.  I read countless posts to forums from survivors who either lived on a farm to next to one breathing pesticides for years.  The article below confirms pesticide exposure as one of the evironmental causes of myeloma.  Another environmental cause is exposure to benzene in a printing plant.  I worked in a printing plant before my mm diagnosis.

Multiple Myeloma and farming. A systematic review of 30 years of research. Where next?

"Conclusions: Farmers seem to have increase risk for MM. However, a major limitation of this analysis is the presence of significant heterogeneity across the studies and the evidence of publication bias in some models.A pooled analysis using individual level data could provide more power and permit the harmonization of occupational and exposure coding data"

http://7thspace.com/headl...

It is pretty well established that two things lower testostone levels in men.

1) aging

2) a peripheral blood stem cell transplant

Considering that he average myeloma patient is a 65 year old maie, I think mmers need to read this blog.

The article linked below is about aging men and the benefit of hormone replacement therapy.

http://beating-myeloma.or...

My bone marrow transplant left me with testosterone and DHEA levels well below the normal ranges.   I now supplement with testosterone creme and DHEA supplements- 25 mg x 1 per day.  Believe me, the supplmentation makes a difference.  David Emerson

After learning about myeloma in general,  myeloma survivors and caregivers need to learn about possible side effects.  Blood clots or "deep vein thrombosis" are a possible medical problem for the general population.  One's risk of a clot increase as a side effect either from myeloma itself or from many of the standard of care therapies.  David Emerson

To learn about this possible medical issue in general, please read the excerpted study below:

http://beating-myeloma.or...

To read about vitamin E supplementation and it's beneficial effects on the blood, please read this below:

http://beating-myeloma.or...

Below is an article from the Cancercompass newsletter referring to comments made by Mayo hematologist S. Vincent Rajkumar, M.D.

Dr. Rajkumar raises the central issue in myeloma treatment today.  Should mm patients be trying to cure their myeloma or just control it?

I think it's safe to say that all survivors want to cure their cancer.  We all want to completely rid our body of our cancer.  But it is important to examine the reality of a myeloma diagnosis.

Upon initial diagnosis, we are all told that myeloma is an incurable cancer. And the word incurable stuns both survivors and caregivers alike.  When I was first diagnosed in 1994 I read the book Going for the Cure by Dr. Franchesca Thompson.  Dr. Thompson recounted the process of the first peripheral blood stem cell transplant for multiple myeloma.  And she was going for the cure!  So I thought I would too.  Surely modern medicine would figure out a way to cure me.

Dr. Thompson died a few years after her pbsct, my conventional therapies left me with extensive nerve damage and it is a documented fact that the majority of patients do not benefit from conventional drugs:

"Dr Roses, an academic geneticist from Duke University in North Carolina, spoke at a recent scientific meeting in London where he cited figures on how well different classes of drugs work in real patients."

"Therapeutic area: drug efficacy rate in per cent

Oncology: 25%"

http://beating-myeloma.or...

So what is a myeloma survivor to do?!  A chemo combo like revlimid/dex in lower doses reportedly has a two year remission rate of over 90% with lower side effect rates than other regimens.  The beating-myeloma website is filled with information on the benefit of complementary therapies- curcumin has a documented synergistic effect with velcade.  Antioxidant supplementation during chemotherapy may increase the benefit of the chemo.

Make no mistake- myeloma is an aggressive cancer- I have used every weapon available to control it.

Cure vs. Control

In a related commentary, Mayo hematologist S.
Vincent Rajkumar, M.D., discusses the need to re-
examine the goals of clinical research and treatment
for patients with MM. Given that MM is generally
considered to be incurable, Dr. Rajkumar poses two
important questions about treatment goals:

"Should we treat patients ... with the goal of
potentially curing a subset of patients, recognizing
that the risk of adverse events and effect on
quality of life will be substantial? Or should we
address myeloma as a chronic incurable condition
with the goal of disease control, using the least
toxic regimens, emphasizing a balance between
efficacy and quality of life ...?"

Dr. Rajkumar explains that for decades, this "cure
vs. control" debate was not necessary because it was
assumed that a cure was unattainable. However, since
the 1990s, several new effective combination
treatments have emerged and produced impressive
results. While these advances are encouraging, Dr.
Rajkumar advises that treatment decisions must still
take into account patients' needs, goals and
attitudes toward overall survival vs. quality of
life.

"Although cure is the ultimate goal of our long-term
research, we need more data from randomized trials
before resorting to highly intense therapy that is
more toxic and unlikely to lead to a cure outside
the setting of a clinical trial."

A peer-review journal, Mayo Clinic Proceedings
publishes original articles and reviews dealing with
clinical and laboratory medicine, clinical research,
basic science research and clinical epidemiology.
Mayo Clinic Proceedings is published monthly by Mayo
Foundation for Medical Education and Research as
part of its commitment to the medical education of
physicians. The journal has been published for more
than 80 years and has a circulation of 130,000
nationally and internationally. discusses the need to re-
examine the goals of clinical research and treatment
for patients with MM. Given that MM is generally
considered to be incurable, Dr. Rajkumar poses two
important questions about treatment goals:

"Should we treat patients ... with the goal of
potentially curing a subset of patients, recognizing
that the risk of adverse events and effect on
quality of life will be substantial? Or should we
address myeloma as a chronic incurable condition
with the goal of disease control, using the least
toxic regimens, emphasizing a balance between
efficacy and quality of life ...?"

Dr. Rajkumar explains that for decades, this "cure
vs. control" debate was not necessary because it was
assumed that a cure was unattainable. However, since
the 1990s, several new effective combination
treatments have emerged and produced impressive
results. While these advances are encouraging, Dr.
Rajkumar advises that treatment decisions must still
take into account patients' needs, goals and
attitudes toward overall survival vs. quality of
life.

"Although cure is the ultimate goal of our long-term
research, we need more data from randomized trials
before resorting to highly intense therapy that is
more toxic and unlikely to lead to a cure outside
the setting of a clinical trial."

A peer-review journal, Mayo Clinic Proceedings
publishes original articles and reviews dealing with
clinical and laboratory medicine, clinical research,
basic science research and clinical epidemiology.
Mayo Clinic Proceedings is published monthly by Mayo
Foundation for Medical Education and Research as
part of its commitment to the medical education of
physicians. The journal has been published for more
than 80 years and has a circulation of 130,000
nationally and internationally.

Over the past several months improvments in content, useability and interactivity to the beating-myeloma.org website have taken place.  The daily digest now carries all new content went it is created before it is placed on the website itself- subject pages, articles, blogs and forum posts.  Improvements will continue.

Today you may have noticed that the digest was written in a more readable typeface.

The Galen Foundation continues to improve the experience of mm survivors and caregivers alike.

Two members have signed up for the virtual walkathon and one member has sponsored me for the walk.  Please consider either participating.

To create your own page for your own virtual walk contact Susan Miller at smiller@galenfoundation.org.  To sponsor me go to

http://www.firstgiving.co...

Thank you for your support.

David Emerson

I read a post on one of the myeloma forums yesterday that (paraphrase) "dexamethasone makes all conventional therapies work better..."  I can't site studies but I think this statement is true.

The important thing to keep in mind is that the dose of dexamethasone, how much you take each day or each week is critical.  Below is a link to a study on the greater effectiveness of thal/dex high dose vs low dose as well as forum comments about low dose dex.

http://beating-myeloma.or...

Further, I came acros this study today from last December talking about how steroid dose was a factor in both efficacy and tolerance.

"Fewer Steroids Suggested For Myeloma, United Press International

So you or someone you love has been diagnosed with multiple myeloma.  The natural thing to do is focus on your cancer.  The last thing you want to do is read a letter from your insurance company that says that they are denying a payment.

"Don't they know I have cancer, you ask yourself?"  "But my doctor told me to do this!!!  How can the insurance company not pay for it???"

After you take a deep breath, perhaps go for a walk, sit down quietly and try to think through this problem.

While trying to resolve an insurance denial is probably the last thing your or your caregiver want to spend time doing, your efforts can transplate into thousands of dollars in benefits.  Learning to manage your insurance company is in your best interest!

1) Insurance companies are for profit organizations.  All insurance plans explain what is covered and what is not.  These companies cannot pay for anything and everything.  It is in your best  interest to read the plan guide carefully to learn what is covered and what is not.

2) Read the article linked below carefully.  It gives you step by step instructions to handle a rejection of payment from you insurance company.

Strategies that can bolster your case in appealing a health insurer's denial of coverage.  - Video: A Struggle for Health Insurance Coverage

http://beating-myeloma.or...

Looking back on my conventional treatment for my myeloma, the local radiation that I underwent in my neck (C5) and to my iliac crest and sacrum (hip bone and tail bone) was both a blessing and a curse.

My local radiation therapy resulted in radiation-induced lumbo-sacral plexopathy- the side effect that plagues me to this day.  To get a sense of how this side effects effects me, go to the home page of this site and watch the TTTWTW video.  I can walk but with difficulty.  If I knew then what i know now I would certainly supplement with antioxidants during therapy.

http://beating-myeloma.or...

This link is to a Wall Street Journal article talking about advacements in radiation therapy.  If I were considering radiation therapy, I would find out what kind of machine my hospital used-

http://online.wsj.com/art...

In short, local radiation helped me manage my lesions- more than chemotherapy did.  If I were considering radiation therapy today, I would do everything possible to maximize the benefits and minimize the side effects.

It is clear from studies on the subject that exercise is important for those with cancer. Not only do studies indicate that exercise helps during chemo but after chemotherapy as well.

Many of us have begun taking supplements and improved our diets but we just can't regulary exercise.

The articles below may help. The main reason why I exercise now is because I got in the habit of going to the gym. My daily trip to the gym is just that- it's a part of my day. It's a habit. I have gotten to the point in my life where I get anxious if I don't go to the gym.

Warning: Habits May Be Good for You-

NYTimes-Sunday, July 13 '08

"If you look hard enough, you'll find that many of the products we use every day chewing gums, skin moisturizers, disinfecting wipes, air fresheners, water purifiers, health snacks, antiperspirants, colognes, teeth whiteners, fabric softeners, vitamins are results of manufactured habits."

http://www.nytimes.com/20...

This next article gives you some ideas to get exercise without going to the gym. Again, get in the habit of taking the stairs at the office and get your heart rate up each time you do.

"1. Take the faraway spot. Walking from the farthest corner of the parking lot will burn a few calories. If it's a parking garage, head for the roof and use the stairs.

2. Get into the swing of it. Swinging your arms when you walk will help you reach the brisk pace of 3 to 4 miles per hour that is the most healthful.

3. Be part of the fun. Adults shouldn't miss a chance to jump into the fray if kids are playing on a playground or splashing around in the water. Playing along will strengthen muscles and bones and set a good example.

4. Clean house. Even if you have a cleaning service, you can take responsibility for vacuuming a couple of rooms yourself. Fifteen minutes burns around 80 calories.

5. Adopt someone as your walking, jogging, or biking buddy... Adding a social element to exercise helps many people stick with it.

6. ... even a buddy with four legs. Several studies have shown that dog owners get more exercise than the canineless.

7. Be a stair master. Taking the stairs is good for your legs, knees, and cardiovascular system. Don't overdo; take one flight at a time."

http://www.newswise.com/a...

I underwent 5 rounds of VAD chemotherapy, 2 courses of cytoxan and a peripheral blood stem cell transplant all in 1995. Over the next few years I learned that I had to contend with a variety of short and long term side effects including peripheral neuropathy, lumbo-sacral plexopathy, chemo brain, chronic deep vein thrombosis and irritable bladder, among others.

Of the many complementary therapies that I use to manage my myeloma and side effects from past conventional therapies, daily exercise is the most effective for me.

At the time there was no discussion of the side effects that I was sure to develop from my chemotherapies. This recent article from the New York Times indicates that oncologists are beginning to study the benefits of exercise to survivors.

Said the Doctor to the Cancer Patient: Hit the Gym

http://www.nytimes.com/20...