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July 2013 Archives : Myeloma Voices

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It has been a few weeks since I have commented on anything  related to food, but three new items have caught my attention.  First of all, something really good: a wonderful new book,  A History of Food in 100 Recipes, by William Sitwell. This new book describes how to prepare "real food" - that is, homemade from unprocessed ingredients -- in wonderful ways, extending all the way back to thousands of years before the time of Christ (B.C.).  

The book starts with an Egyptian recipe for bread from 2055 B.C. But my favorite recipe is from 350 B.C.: "Fish Baked in Fig Leaves."  I love the simplicity! "Wrap [the fish] in fig leaves with a little marjoram.  Just place it gently in fig leaves and tie them up with a string, then put it under hot ashes"...and you are done--except for finding the fig tree, that is. Foil or parchment paper may be more convenient in 2013! 

Other amazing recipes include the first known recipe for making pasta (in Sicily, 1154 A.D., from old Etruscan methods), and the longest recipe in the book, a 1,400-word recipe for salad dressing no less, from a 1699 book by British author John Evelyn. The care and attention devoted to achieving freshness and the very best flavors are truly extraordinary...and not new. Ingredients wouldn't be out of place in a salad dressing today: oil, vinegar ("preferably infused with flowers such as nasturtion"), pepper ("should not be dust but coarsely ground") and mustard ("preferably from Tewkesbury and made with Yorkshire seeds"). 

So what about the bad?  Robin Tuohy, IMF's Senior Director of Support Groups, drew my attention to online reports about the very high levels of acrylamide found in Pringles potato chips. Apparently, these potato chips don't really come from potatoes. The starting product is a "slurry" of rice, wheat, and corn to which apparently some potato "flakes" are added.  But even more disturbing is the chemical "cocktail" (including acrylamide), that emerges as the chips are prepared, baked and shaped. About all that needs to be said is that I recommend avoidance of toxic exposures whenever possible!  Besides, if you're going to indulge, why not make something delicious like "Potatoes Fried and Simmered with Bacon," a 1581 recipe from William Sitwell's book?

And what about the debatable?  Well, this refers to juicing. Although widely used, popular, and considered healthy, some important cautions have emerged (Jennifer K. Nelson: Mayo Clinic nutritionist).  Simply put, eating whole fruits and vegetables is better and healthier.  There is no magic benefit from juicing unless you might not otherwise be consuming fruits and/or vegetables!  

With juicing, vitamins and minerals in skins are lost, plus the fiber in the pulp is also usually lost. The juiced components are not necessarily better absorbed.  In fact, a high load of phytate, from green vegetables can impair absorption.  Juicing can also lead to consumption of a lot more sugar and calories than realized or intended. The sugars come in the form of a high glycemic load, which is not ideal.  

A couple of cautionary notes: do not leave juices sitting around; they can build up harmful bacteria (definitely not a good thing). As far as "intensive juicing" for cleansing, there are not enough data regarding benefit or harm to comment.  But mobilizing toxic chemicals in your system should be done with caution at the very least! Also, remember that for both eating and juicing, it is important to seek out organic, pesticide-free products.

A couple of positive suggestions:  Using a blender (instead of juicing) can retain skins and pulp.   Then, add water or juice as needed.  Or, my personal favorite for fruit juice is to add pomegranate juice to sparkling water to create a delicious fresh fruit drink.

So there you have it.  Trying to eat and drink in a healthy way takes attention and work!

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF Hotline staff instead. Questions are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate. To contact the IMF Hotline, call  800-452-CURE, toll-free in the US and Canada, or send an email to hotline@myeloma.org. Hotline hours are 9 am to 4 pm PST. Friday summer hours are 9 am to 3 pm PDT. Thank you.

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As the Black Swan Research Initiative (BSRI-- the IMF's innovative approach to finding a cure for myeloma --moves forward since its official launch in March, more and more myeloma researchers are contributing to the framework that is necessary to reach the project's key objectives. In recent weeks, two articles have appeared in medical journals supporting the underpinnings of the BSRI--in particular, the need to start curative therapy early in the disease to maximize chances of success, and secondly, the need to carefully monitor both the amount and the type of any residual disease that might persist after therapy.

In the journal Blood, Dr. Ola Landgren summarizes the strategy of  "pursuing the curative blueprint for early myeloma."  He both identifies the steps forward, as well as illustrating unanswered questions which will form the basis for sequential BSRI projects.

In Leukemia, the Salamanca University-led group reports on the use of multi-parameter flow cytometry immune phenotyping.  This flow technique to study the bone marrow is used in a variety of ways, including assessment of minimal residual disease (MRD).  In this case, the group reports the identification of patients with features of MGUS: a subgroup with a better outlook and the potential for long-term disease control, even in the presence of residual disease.  Here, the MRD has an "MGUS-like signature" and persists at a stable level for years without need for active therapy.  This illustrates the need for the multi-pronged approach of BSRI to identify the many ways to achieve best outcomes including cure.

Recap of Black Swan Research Initiative

To recap for those of you who may be unfamiliar with the BSRI, until recently the myeloma research community focused its efforts on comparing one treatment to another. Studies were conducted to determine which myeloma treatments or combinations of treatments resulted in comparatively better overall survival. We weren't confident about finding a cure--we were just looking to improve outcomes in myeloma patients by degrees. 

But in recent years, with the arrival of the novel myeloma therapies, it was realized that we are getting closer and closer to eliminating the disease entirely. A few of us began to think: Why not look at myeloma from a new perspective and come up with a plan to cure it?

That question was put before a small group of myeloma researchers at a brainstorming meeting held in Amsterdam in June 2012. There, the seeds of the Black Swan Research Initiative were sown and the strategy mapped out: The team would develop reliable tests for measuring minimal residual disease (MRD) in myeloma patients, and with this testing as our guide, we would enhance myeloma therapy to come up with a cure. This testing would be standardized and validated such that researchers around the globe would all use the same approach.

Importantly, the BSRI's international researchers would test multiple treatment approaches simultaneously to see which ones were coming closest to eliminating the disease entirely.

What MRD tests are available, and how can they be improved?

The BSRI team will use three techniques for testing MRD in myeloma patients.  We anticipate that these tests will be affordable and widely available. They are flow cytometry,  DNA, and  PET/CT scanning. When flow, DNA, and PET/CT scans are all negative, this is MRD-Zero. The BSRI proposes MRD-Zero as a new definition of response beyond traditional IMWG CR (complete response).  

However, validation is a critical step. If testing is negative (MRD-Zero), does this really predict long survival free of myeloma and, ultimately, a cure? We anticipate confirming this hypothesis as an early step in the BSRI project.

Why is MRD-Zero an important new response endpoint?

Without MRD-Zero testing, one is really working in the dark. Has the treatment worked well enough?  Is there residual disease?  Is there possible cure?  The ability to test myeloma patients for MRD-Zero is critical in order to develop new and potentially curative therapies.  

And this is what the BSRI is all about: developing new curative therapies for myeloma. The BSRI is structured to use MRD-Zero testing in clinical trials designed to achieve a cure. 

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF Hotline staff instead. Questions are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate. To contact the IMF Hotline, call  800-452-CURE, toll-free in the US and Canada, or send an email to hotline@myeloma.org. Hotline hours are 9 am to 4 pm PST. Friday summer hours are 9 am to 3 pm PDT. Thank you.