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October 2012 Archives : Myeloma Voices

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In the October 28, 2012 issue of the New York Times Sunday Magazine, Dan Buettner discusses "The Blue Zones": places in the world where an unexpectedly high percentage of people live to be over 100 years old (or close). Dan has a newly updated book out on this topic, but the focus of the New York Times article is the story of a Greek-born war veteran who moved to the U.S. and, in his 60s, developed lung cancer (presumed terminal). Expecting to die very soon, he returned to his native island, Ikaria, a Greek island 30 miles off the west coast of Turkey. Now, 35 years later and approximately 100 years old, he is cancer free and living an active life on Ikaria.

The question is why?

To come up with an answer, Dan Buettner has zeroed in on a "Blue Zone," which is a cluster of villages high in the mountains of Nuoro province in Sardinia, which contains the highest concentration of men over age 100 anywhere in the world.

He has recruited a team of experts, including Dr. Gianni Pes (University of Sassari in Italy) and Dr. Michel Poulain, a Belgian demographer, to help assess and validate if "Blue Zone" residents are really living longer than expected and why. So it is possible to compare and contrast the diet and lifestyle of residents of Ikaria, including Stamatis Moraitis, the long-lived cancer survivor, with centenarians from Sardinia and the other "Blue Zone" regions.

A key common feature is the local variations on the "Mediterranean type diet." The residents of Ikaria drink a popular "mountain tea" made from dried herbs such as marjoram, sage, mint (fliskouni), rosemary and dandelion. Local honey is widely used, and old people start their day with a spoonful of honey.

The menu in Ikaria include goat's milk, two-to-four glasses of local red wine daily, lentils, garbanzos, potatoes, fennel and seasonal vegetables from the garden. Residents also enjoy fish three times each week and small portions of larded pork from the family pig. There is generous use of olive oil with meals, plus local sourdough bread made with stone-ground wheat.

So there you have it, "Mediterranean Real Food": but there is also what they do not eat! Very little refined sugar and white flour; no sodas. All of this is remarkably like the "Real Food" approach we have been discussing in recent weeks.

Asked why she lived past 90 years, an old lady on Ikaria said it was the clean air and wine. A 101-year-old woman just shrugged and said, "We just forget to die."

There may be a lot of truth in this. The island residents do not track time (no clocks), work in their gardens, socialize, drink wine, have naps and are happy to wake up each day. So, although food is definitely important, the impact of the whole lifestyle cannot be ignored.

I have the impression that rushing to the gym eating an energy bar is not going to replicate the long life on Ikaria no matter how much "Real Food" we add in. We need true lifestyle changes, plus every effort to eat as best we can!

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A lawn chair, an old coffee table, an IBM typewriter, a ream of paper, and three people with very different backgrounds: that was the checklist of assets and experience that the International Myeloma Foundation had when it was born 22 years ago. Every day, no matter our triumphs or tragedies, I usually have a moment reflecting on where we began.

Comparing the IMF of today to the time of our founding, it is remarkable to me how far we've come...and how far we still have to go. Think of the maturing process of a young 22-year-old; how far he or she has developed since birth and yet still unsure of what the future will hold. That is how I feel about the IMF.

Like an infant, in our early days we were happy to have achieved something, anything. Following Brian Novis's diagnosis of myeloma, we had little idea of what lay ahead of us and lived day-to-day, thankful for every good one and knowing that they would become fewer sooner rather than later. Brian immediately understood that the main thing missing was information: information that patients could use and, sadly, information that most doctors and researchers didn't have.

As the idea of the IMF began to gel, we had few goals but great ambition. The first important achievement was the organization of the first international conference of myeloma experts. This meeting of 40 experts sharing ideas has evolved into a biannual international conference attracting thousands of clinicians and researchers. Additionally, since that time, the topic of myeloma has gone from being a peripheral concern at the annual meeting of the American Society of Hematology (ASH) to a highly anticipated forum and megaphone about the advances in myeloma treatment and research for thousands of doctors and researchers, and hundreds of thousands of patients and caregivers from every part of the globe.

The IMF seized on this opportunity to form a board of Scientific Advisors who, in 2001, met to publish the first ever management guidelines for myeloma. As many long-time IMFers well know, this initiative led to the creation of the International Myeloma Working Group (IMWG). This collection of internationally recognized experts is now the source of guidance and information for all with an interest in myeloma. We have now hosted three annual meetings of the IMWG, which has produced numerous management guidelines covering every facet of myeloma treatment.

Because of the achievements, clinicians have immediate, timely access to the best, most recent information to provide patients everywhere the best care possible. But that doesn't mean everyone has access to ideas yet.

The central idea that grew out of those early days was the value and importance of patient education. After attending that first clinical conference I began asking, "Why don't we have these kinds of gatherings for patients?" It had never happened before, so initially there wasn't much interest. But we persevered and held the first ever--for any disease group anywhere--Patient & Family Seminar in 1993. Since that time we have held hundreds of patient education meetings all around the world. This year alone we have hosted or co-hosted more than 45 patient meetings in 17 nations.

Also in 1993, we produced our first info packs, arguably the best information available for myeloma patients everywhere. In the early days we were busy at the copy machine churning out as many as we could afford. Today we produce more than 100 patient education booklets in at least 30 languages that are free to anyone who asks.

Looking back, we never could have imagined in 1990 the scope and range of programs that the IMF was capable of producing:

  • A Hotline that takes thousands of calls per year, professionally staffed, and for most who call, the first optimistic words they hear about their myeloma diagnosis.
  • An advocacy program that voices the concerns and needs of myeloma patients to policymakers.
  • Research grants given to the best young and experienced minds in the field of myeloma.

In 22 years, the IMF is a mature, ever-growing organization that constantly seeks the input and direction from our members so, if there is a need, we do all we can to address it.

Over the years, I have been struck by the common hopes and fears of myeloma patients and caregivers everywhere. We all have simple, yet invaluable desires: to see our children graduate from school, to hold our grandchildren, to celebrate that important anniversary with our loved ones, to laugh with our friends, to hold hands on a peaceful walk in the woods. And in the simplicity of these desires, you experience what the core mission of the IMF is. We are here to serve every individual who has been touched by myeloma.

Thanks to advances in medicine and the treatment, especially within the past 14 years, myeloma patients are living significantly longer with a vastly improved quality of life. We can envision a day when myeloma will become a chronic disease, something that Brian could never conceive.

In 2002, I was honored to testify before the U.S. Senate on behalf of all cancer patients to advocate for funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI). I described to the senators a situation that is far too familiar to too many of us: "Brian's doctor said he had three to five years to live. Our family and friends hoped and prayed that he was wrong, that we would be able to raise a family and have a long and happy life together. We were wrong--the doctor was right. Brian died in 1992, just four years after his diagnosis at the age of 37. Our life together, however brief, was happy. And even though we never had children we did create a family. Our family became the International Myeloma Foundation. A family comprised of patients, family members, caregivers, and friends."

Much like a parent who nervously, but confidently, anticipates a productive life for their 22-year-old child, I am confident, not nervous, that as our 22-year-old idea continues to mature we will make significant contributions with our core mission and programs.

Looking back on the past 22 years, I realize that together we have created so much more than a family. We have helped create a loving and caring community. A community of hundreds and thousands that can trace its birth to a lawn chair, a coffee table, an IBM typewriter, a ream of paper, and three people with very different backgrounds.

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My life was deeply touched this fall by three special, hardworking couples: Karl and Lorraine Vollstedt, Howard and Teresa Martinson, and Harold and Sue VanDuyn. Each went out of their way to welcome me into their local myeloma support group community.

With the help of myeloma survivor Barb Davis, Karl and Lorraine are co-leaders of the Stillwater, Minnesota Multiple Myeloma Support Group. I met them when I attended my first ever support group meeting five years ago.

I am fond of telling anyone who will listen that the education I received—and the friendships I made there—helped save my life.

After a number of years, Karl is still alive and kicking. Myeloma and advancing years have taken their toll on Karl. And Lorraine recently had both knees replaced, along with a painful foot surgery. But you wouldn't know it by talking with them—two of the most positive, upbeat people I have ever met

Lorraine was kind enough to invite me to stay with them during my recent visit north. I was scheduled to speak to a myeloma support group in Minneapolis, but I set up my schedule to allow me to spend a couple extra days with Karl.

We drove into the city for a tour of Target Field, the new Minnesota Twins' ballpark. We visited a homeless center there, too; Karl is a member of their board of directors.

And speaking of homeless shelters, my new friends and support group leaders, Howard and Teresa, in Spokane, Washington, also help to run a shelter in nearby Coeur d'Alene, Idaho.

What?  Like dealing with their own cancer and helping other patients and caregivers—doesn't keep them busy enough? Amazing!

I met Howard and Teresa—and our third couple, Harold and Sue—in Dallas at the IMF's Support Group Summit. Harold had just introduced himself when he started bragging-up their hometown of Grand Rapids, Michigan. They invited me up to speak to their group and I eagerly accepted.  Even thought Grand Rapids is the state's second largest city, there wasn't a support group for myeloma patients anywhere to be found nearby. So of course, this energetic couple started one ten months ago.

With the help of the IMF, the new, fledgling group is already amazingly successful.  Over 40 patients, caregivers and family members somehow squeezed into a room in the world famous Gilda's Club to hear my story on Monday. And Harold was right! Grand Rapids was a very impressive city, with new medical and research buildings rising everywhere.

But it's the people that make Stillwater, Spokane and Grand Rapids so special. Everyone I met was warm and helpful.

Harold only recently recovered from a stem cell transplant, and some of his counts haven't recovered.  But like Karl and Lorraine, you wouldn't know it!  Harold may be the patient face of the new group, but Sue pulls everything together.  She's the organizer.

Isn't that always the case?  Behind most every helpful myeloma survivor, there is a dutiful caregiver that helps monitor their medications, gets them to appointments on time and helps emotionally hold things together.

At breakfast Tuesday, Harold started rattling-off examples of all the new myeloma friends the couple had made since starting their group.  Right back at you, Harold!  I hope I make the list.  I can't imagine having better friends than Karl, Lorraine, Howard, Teresa, Harold and Sue!

Three exceptional patient/caregiver teams and support group leaders.  Six exceptional friends.

Funny how a cancer like multiple myeloma can bring out the best in people, isn't it?

Feel good and keep smiling!

Pat

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After the teleconference on "10 Steps To Better Nutrition," numerous comments, questions, and helpful suggestions came into the International Myeloma Foundation (IMF). It is clear that many details about food and drinks are of great interest. So I will start with some of the recurring themes.

Are some cookies okay?

The answer is yes! It is important to understand about acrylamide and some other aspects of cookies. Let me again refer you to the Mayo Clinic nutrition article plus the National Cancer Institute's "Fact Sheet: Acrylamide in Food and Cancer Risk." Acrylamide is a toxic chemical which is produced by high temperature cooking (above 248�F [120�C]) when asparagine, an amino acid (in proteins), binds with sugars in whatever is being cooked. So keep temperatures low and avoid excessive browning or burning: these are key to keep acrylamide low. Preparative pre-cooking can also be important, such as the use of coating with olive oil before cooking meat. Likewise blanching potatoes before frying can be helpful in reducing acrylamide. So what about cookies? It is definitely possible to have cookies with low acrylamide. For example, lightly baked, fully organic oatmeal cookies or shortbread cookies can be options. Obviously, one needs to separately consider the sugar content and calories: nothing is simple these days!

Talking about sugars, let me switch to the number one area of questions and comments:

What about sodas? Are there some safe options there?

On the teleconference call on Thursday, October 11th, I cautioned that quite a number of processed and packaged foods and drinks can contain toxic chemicals, hormones, antibiotics, and some can even contain dangerous fungus or bacteria.


So what can one do to stay healthy? My strong recommendation is to eat "Real Food" and carefully selected drinks. I also recommended that you stay above the fray of the often confusing and controversial discussions about which chemical or hormone is toxic or not. Just do your best to avoid chemicals or processes which are in dispute and potentially dangerous. Read labels and make a commitment to maximize the amount of "Real Food" in your diet. If you can't go to a Farmer's Market or don't have one close by, check at your local store- many are now stocking organic food (Time Magazine, October 2012). Another option is to see if fresh, local, organic produce can be delivered (Fresh Direct) or perhaps friends or neighbors can help.

What is best with regard to sodas?

The main point is to do your best to avoid:

A recent editorial in the New England Journal of Medicine (this and another article are linked as references from the teleconference page) highlights the need to restrict soda intake, because of the high-fructose corn syrup, to reduce the risk of developing obesity, diabetes, and/or a range of other ailments.

A useful website source is "Rodale" (Where Health Meets Life), which highlights 8 healthy sodas. Go to the site to get full details. The sodas and healthy drinks are:

  • Fizzy Lizzy, a carbonated fruit juice drink
  • Reed's Light extra ginger brew
  • Virgil's Root Beer
  • Bionade, which comes in a range of fruit flavors
  • Oogave, a certified organic soda with multiple flavors
  • Kombucha fermented tea
  • Hot Lips cranberry or pear soda
  • Steaz sparkling green tea

These are options if you feel like having a soda or a healthy drink! Another option, in response to a question posed, is simply to add some natural pomegranate juice into sparkling water, which can produce quite a delicious drink. Pomegranate is an ancient and healthy fruit, which contains many active ingredients, such as antioxidants and polyphenols. Claims have been made that it is helpful for a variety of medical conditions and have been taken seriously enough to lead to several ongoing trials. Pomegranate is a good fruit- just how good, we don't know yet!

So this is perhaps enough information for now. I will be back again soon to discuss additional topics of particular interest or concern. In the meantime, don't forget to read the labels!

POMALIDOMIDE UPDATE

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The US Food and Drug Administration (FDA) has cancelled the planned November advisory committee (ODAC) meeting for Celgene's pomalidomide application.  Celgene, in a press release, indicated that the pomalidomide application is continuing, which means that a decision with regard to pomalidomide is still expected on or before February 10, 2013.

 So what does that cancellation mean?  Firstly, it is important to note that the FDA is not obliged to convene an ODAC hearing and, in fact, only needs to have a hearing if there are unresolved questions or concerns.  Thus, the first and dominant interpretation is that there are no outstanding issues and that the FDA is on track to make a decision- most likely a positive decision with regard to pomalidomide approval.  The alternate interpretation that the FDA would disapprove pomalidomide without a formal ODAC hearing seems much less likely.

 Thus, I am optimistic that pomalidomide will indeed be approved based upon "unmet need" just as was the case recently for carfilzomib (Kyprolis�).  The ODAC hearing for carfilzomib may have helped the FDA in considering pomalidomide in that the case for the "unmet need" for new drugs to treat myeloma was very clearly and strongly articulated during that hearing.

So, let's keep our fingers crossed for a positive outcome.

Looking for the Cure

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Join me on October 11th for a Living Well with Myeloma Teleconference on the 10 Steps to Better Nutrition: t.co/U5dDhKC8