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July 2012 Archives : Myeloma Voices

SGLSummit_app.jpgAfter a long and educational first day--a day of updates and understanding, of mixing and mentoring, we were ready to party! But first the support group leaders had their picture taken. This could have been a nightmare, trying to wrangle this group, but it was easy because these guys know something about compliance! Everyone lined up by height and smiled when Jim Needham, who stood on a ten foot ladder with a very heavy camera, told them to say cheese.

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Afterwards, wine and appetizers were served in the foyer of the ballroom, giving us a chance to sit and talk with each other, which is always fun. So much fun that it wasn't hard to follow Alan Kumamoto's final instruction of the day: "I want you to make three new friends tonight." We then went inside for a delicious dinner where we toasted the FDA approval of Onyx's Kyprolis and our good fortune to have another drug in the myeloma treatment armamentarium.

After we had consumed enough food to make us happily quiet, the Advocacy Team presented their Second Annual Academy Awards of Advocacy to leaders who had taken the time to testify or work on behalf of the Oral Parity efforts. Each winner received an Oscar statue to drum rolls and Olympic music at the end of a red carpet. With the lights down and the spotlight shining, the winners were honored for their hard work and dedication to our advocacy program--and for going above and beyond to have their voices heard on behalf of all cancer patients. 

And the winners were... Jerry Walton (Norfolk, VA), Johanna Jones (San Diego, CA), Nick Menedis (Columbus, OH), Darlene Jessee (Johnson City, TN), John Killip (Kansas City, MO), Sue VanDuyn (Grand Rapids, MI), Paula Van Riper (Central New Jersey), and Cindy Chmielewski (Philadelphia, PA). Absent winners - Jim Omel (Grand Island, NE), and Anthony Sibert (Riverside, CA). Congratulations to all of our All-Star Advocates!

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Cindy Chmielewski on the red carpet

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Darlene Jessee receiving her award.


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Meghan and Aimee with Nick Menedis.

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From left to right, we have Darlene Jessee, Cindy Chmielewski, Sue VanDyun, John Killip, Joanna Jones, Nick Menedis, Paula van Riper and Jerry Walton. Not pictured are winners Jim Omel, Anthony Sibert, and Rob and Sue Enright.

And then it was off to our rooms to watch the opening of the Olympics in London before we passed out.

The next day there would be a big surprise for the leaders. And I mean BIG! Stay tuned.



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THE MIXER

Our longtime facilitator Alan Kumamoto asked each of the support group leaders to stand up, give their support group name and how long it has been around, what their role is (patient, caregiver, social worker) and provide a tip or challenge.

The leaders who spoke are nurses, patients, caregivers, social workers. Their tips and challenges resonated in the room:

  • ATTENDANCE CHALLENGES
    • Some groups have more caregivers than patients. Many of the caregivers are women whose husbands, the patients, refuse to attend. How do we get the patients to attend?
    • We have the problem that people stop coming because it is depressing. We seem to be focusing too much on the medical.
    • How do you keep folks coming without having speakers? 
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    • Member loss.
    • Seasonal attendance.
    • People leaving when they feel better
    • Growing the group. Getting more people to come.

  • ATTENDANCE TIPS
    • Alternate scheduled speakers with meetings that provide time to talk.
    • Followup email after every meeting sent to all members, those who attended and those who didn't.
    • Introduce topics other than myeloma to talk about. Address the whole person, by understanding that they have different interests and cultural backgrounds.
    • Really embrace people who come, and they will come back.
    • Communicate between meetings.
    • Meet with a member every month.
    • Food!
    • Understand is that touching even one person is important

  • CHALLENGES OF MANAGING MEETINGS
    • How do we handle one person who is always dominating the conversation, contradicting the speaker, quoting stats that really aren't relevant.
    • Some groups have speakers regularly, but it can be overwhelming to get speakers all the time. 
    • How do you get people who attend the meetings to share responsibility for activies? Silence when we ask for volunteers.yvonne_sglsummit.jpg
    • How to find fresh ideas to keep people interested.
    • Leader burnout.
    • Communication with members who do and don't attend.
    • How to increase participation in clinical trials among African Americans.
    • How to help caregivers who have lost their spouses.
    • When a leader leaves or dies, how do we rebuild the group from the ground up?

  • TIPS FOR MANAGING MEETINGS
    • Help the members connect with each other by passing around a sign in sheet at the start the meeting after they have sat down. That way, when they ask who was sitting to their left, you can look at the sheet to help with the identification.
    • Have more experienced members help explain topics to new people.
    • Check in and ask for a brief update about what has been happening in the last month.
    • Have rules and enforce them, including respecting other people's opinions without criticism.
    • Use travel themes as a metaphor to help people see it as a journey and know that there is hope for a cure just beyond the horizon.
    • Remember that you are serving the group. Ask members what they want.
    • Have a Board of Directors who have clear responsibilities.
    • Play a piece of music when there is loss--something the patient liked. Invite their caregivers to stay with the group as long as they want.
    • Explain that you are not a doctor; that no one in the group is a doctor (unless one is) and that any medical issues discussed do not replace speaking with a doctor.
    • Try to make sure new people are speaking and leave each meeting with steps to do.
    Then the leaders were charged with discussing these challenges among themselves and trying to come up plans to overcome them. I have the reports and will post them soon.

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    The third presentation on Friday was by Debbie Birns, a 10-year veteran of the IMF Hotline, on Monitoring Multiple Myeloma: Making Sense of Tests and Results. This was a highly anticipated presentation and she did not disappoint. She pointed out that she is not a doctor, she is a translater of the information. Her job is to help you understand what the test results mean. She made several very important points.

    After explaining what tests can tell us, she told us what we need to be careful about when we look at results:

    • Don't compare results with other patients.
    • No human body is in a steady state. She said test results may vary about 15% either way without necessarily being cause for concern.
    • Patterns of results over time are more important than any single test result.
    • No single test tells the whole story.
    • For some patients, certain tests are more important than others.
    • Normal lab values (usually expressed as a range from ULN and LLN) vary from lab to lab.
    • Test results can also vary from facility to facility.
    • Make sure you are always looking at values expressed in the same units (i.e. grams, milligrams, liters, deciliters, etc.).
    • Get and keep copies of your test results.

    She then went on to explain the different types of tests--lab, imaging, pathology, and genetic.

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    She also reminded us that there is a publication on the IMF website called The Myeloma Patient's Guide to Understanding Your Test Results.

    View the slides from this session.

    If you have any questions about interpreting your test results, call her or the other Hotline Coordinators on the Hotline at 800-452-2873.

    I think next time we should film this session.

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    The second presentation on Friday was an update by members of  the Advocacy Team, Meghan Buzby, Director of US Advocacy, and Aimee Martin, Grassroots Liaison.

    First they reminded us why advocacy is so important. Advocacy raises public awareness of myeloma, ensures that all of us have a voice and that it will be heard. Advocacy changes community attitudes and helps us gain access to resources and funding.

    Then they talked about the accomplishments of the Team. And, frankly, the Advocacy Team has been on fire this year on our behalf.

    HOT TOPICS FOR 2012

    The hot advocacy topics for 2012 are that the Supreme Court upheld the Affordable Care Act and that, thanks in no small part to the tireless activities of the Advocacy Team, 20 states have passed  a version of Oral Chemotherapy Access legislation.

    AFFORDABLE CARE ACT

    Meghan explained the Affordable Care Act to us in lay language. It is pretty complicated, but from what I understood, every state will provide 10 essential health benefits. Advocacy is working to contact states that have identified their essential health benefits to make sure that access to those benefits is implemented. View the slides for this session here.

    Meghan then gave us some key links for more information on the Affordable Care Act:

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    ORAL CHEMO ACCESS UPDATE

    The Advocacy Team has been working on this issue for 3 years. Oral Chemo Access ensures that out of pocket cost is the same for oral and IV chemotherapy. The legislation has been passed by 20 states so far. Six passed it this year alone. 

    At the Federal level HR 2746  is the Cancer Coverage Parity Act. So far there are 45 sponsors of the bill (in 2009 there were only 5 sponsors).

    PATIENTS EQUAL ACCESS COALITION  (PEAC)

    PEAC, headed by the IMF Advocacy Team, is  working with other cancer organizations at the state level on this issue. Meghan and Aimee pointed out that working at the state level is laying the groundwork for federal legislation. Members of PEAC also worked to reintroduce the  federal bill last year.

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    POSTCARDS FOR PARITY

    Aimee told us about Postcards for Parity, which will be used to send to an individual's federal legislators in support of HR 2746. It is a very easy way for your friends and family to communicate with their legislators on behalf of an important issue to all cancer patients.

    Then it was time for Debbie Birns of the Hotline to explain our test results.

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    It's 2:45 in the morning, and we have finished the first day of the 2012 Support Group Leader Summit. Although this is the 13th Summit to be held, this is only the second Summit I have attended in my 10 years with the IMF. (I am the web producer, and as a rule we don't get out that often.) I was only too happy, though, to be asked to blog again. Last year's Summit was an inspiring and emotionally moving experience. (You can see what I wrote about the first day last year here.)

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    It is wonderful to see everyone again and to meet the new leaders. You have to understand that to me these are truly amazing people. Almost all of them--we have some social workers and nurses in the group who are also amazing--are patients or caregivers themselves. They could have turned inward on receiving a diagnosis of myeloma, but instead they turned outward and have committed themselves to helping others. And there are so many new leaders here this time! Leaders who have created groups where there were none. We even have one couple who has come to learn how to start a support group. (I will give everyone a name as I go along. Right now, in the middle of the night, I just want you to know what it felt like to be in the room yesterday.)

    We started the Summit with a welcome from Susie Novis, who thanked the sponsors, identified a couple of leaders who had been at the first Summit (wow!) and went on to explain that Robin Tuohy and the Support Group Team had given everyone a seat assignment because there were so many new leaders they wanted the newbies to be seated with more veteran leaders.

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    She then introduced Dr. Durie, who gave us his annual medical update. I am sure he will blog about the specifics of his talk. Or at least I HOPE he will, because--like last year--some of it was very esoteric and I cannot do it justice. The gist of it was that for a myeloma doctor, these are very exciting times. In the last 5 years it has been particularly exciting because of the new drugs and things happening that are going to improve the outcomes for patients for myeloma.

    First of all he talked about the new drug that has recently been FDA approved (Kyprolis) and those that are on the horizon such as pomalidomide, elotuzumab, and panobinostat. And then he began to explain how the International Myeloma Working Group (IMWG), made up of 160 of the world's myeloma experts, is turning its attention to several new strategic concepts involving early disease, frontline therapies, supportive care, maintenance, myeloma treatment around the world, and how to identify and manage plasma cell leukemia (PCL) and extramedullary plasmacytomata (EMP) in 2012.

    Again, I will let Dr. Durie explain in detail what the plans are, but I got from the talk that although they are very excited about the new drugs, research into what are the most effective combinations of currently available drugs is also leading to some interesting results. What are the best and most cost efficient treatments and the ones that give the best quality of life.

    He said there has been a shift in medical focus that is happening right now. In the last few years there has been a lot of interest in chromosome testing in myeloma. And now there is multiparameter immune testing that can be used to more clearly identify patients in different groups so that they can come up with more personalized therapies.

    He also said that if we are looking for a cure, although it is important to identify the poor risk patients, the cure is going to come by looking at the good risk patients and determining what will work to bring them long progression-free survival.

    He talked about so much that is so new, my head began to swim. He gives the leaders this update because he wants them to know about what is in the pipeline and  share the information with their members. I came away feeling confident that Dr. Durie and his 

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    colleagues were on the case.

    Next up were Meghan and Aimee and the incredible accomplishments of the Advocacy Team. But I am going back to bed for now. More later.

    Looking for the Cure

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    And it's only the 1st Day! RT @MyelomaTeacher: Already learned a lot @imfmyeloma Summit. Thanks @brianduriemd

    Looking for the Cure

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    I have posted a new blog on our recent trip to Japan: t.co/mfzqgbqk #Japan #myeloma

    The Bench in the Lobby

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    All of us affected by cancer remember the day everything in our lives suddenly changed forever. 

    I will never forget when it happened to us. It was in 2005, and Alan's myeloma was discovered after a routine checkup. There had been indications that something was wrong, back pain, a frozen shoulder, and swelling in his leg that turned out to be from a blood clot. The doctor who diagnosed the blood clot wanted Alan to have a complete physical. When tests revealed high cholesterol and an elevated blood protein, Alan came home concerned about the cholesterol. After a couple of return trips to retest his blood, his physician referred him to a hematology specialist. The hematologist sent him home with the materials for a 24-hour urine test; and I saw the words "Bence Jones" on the label. Alan was surprised that the hematologist worked out of a cancer clinic, but he still wasn't worried; he'd been healthy all his life and thought the doctor was being over-cautious. But I looked up "Bence Jones" on the internet: I was scared. Because Alan wasn't distressed, I felt I couldn't tell him what I'd read. I spent the weekend trailing him around the house, silent, but in tears- until he barked at me to stop following him. 

    My emotions careened between hope and fear the weeks before the test results came back. That is another memory all of us share.

     On that day in 2005, Alan went into the doctor's office alone and I waited out in the reception area of the cancer clinic--it didn't occur to either of us that I should be with him in the examination room. That was the last appointment he ever went to without me beside him. When he came out, he led me over to a bench in the clinic lobby. He wrote out "Multiple Myeloma" for me in the little notebook he always carried, and he said the doctor's prognosis was 5-6 years. I remember that I was very calm as I heard this. I was expecting it.  

    That night, we went out for Chinese food. Alan's fortune cookie said "Nature, time and patience are the best physicians." We didn't believe it, but when we got home, I typed that fortune into the screensaver on his computer.
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    Here is a picture of that bench; I went back and took a photo of it. Every time I see it, I wonder how many other people have sat on that same bench and heard their lives had changed forever.

    Last week, our local myeloma support group held a potluck and some of us shared new stories with each other. Mr. B told me about a similar memory, the moment he realized his doctor might be suspecting myeloma and he couldn't tell his wife because it wasn't definite and he didn't want to frighten her. In our blog comments, Dr.  F, in Rome, explained that his wife was expecting their child and he didn't want to upset her with the hard news. That is another shared experience: when you know or suspect, but don't want to burden your beloved with your fears. 

    I hope you will share your memories of the days when your life changed forever: I remember how isolated Alan and I felt until we found a community of fellow travelers. Your memories may help someone who's just sat down on a bench in a clinic lobby somewhere and heard the words "Multiple Myeloma" for the first time.

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    This week I am going to examine the many side effects of dexamethasone--and what we as patients can do to help minimize them.

    In my first book, "Living with Multiple Myeloma," I feature a chapter titled, "Demon Dex."   Here's an excerpt:

    Dexamethasone is the generic name for Decadron, a powerful corticosteroid. The good news is that it is inexpensive--and it works! Dexamethasone can be used to fight myeloma by itself, or in combination with other drugs.

    The bad news is that Dexamethasone comes complete with a long laundry list of possible side effects. A very long list! Possible cardiac arrest, arrhythmias, cardiac enlargement, congestive heart failure, blood clots, impaired wound healing, hair loss, fluid retention and weight gain, weight loss, abdominal distention, loss of muscle mass, abnormal fat deposits, decreased resistance to infection and osteoporosis to name just a few...

    Many dex-related side effects can be annoying. Some may even put your life at risk.

    Two months into my treatment in 2007, I developed a pulmonary embolism and was forced to spend a week in the hospital. I have been forced to take prescription blood thinners daily ever since.

    Most patients who use dexamethasone over long periods of time experience muscle wasting, retain water and begin to develop extra belly fat.  Not what you want to experience when you are an aging 56-year-old trying to maintain a positive body image!  And did I mention possible hair loss, a hoarse, raspy sounding voice, insomnia, extreme mood swings and feelings of anger and rage? 

    But as I wrote above, dexamethasone works.  It enhances the performance of all three of the novel therapy agents: Thalomid, Revlimid and Velcade. Most patients take dexamethasone in pill form. Some patients receive dex by IV along with Velcade. But more often it is taken orally, especially now that many patients are taking Sub Q Velcade.

    A day doesn't go by that I don't receive one or more emails or comments complaining about dexamethasone-associated side effects. Not taking dex isn't an option for most of us. It is too important to our therapy results to drop--at least at first.

    So what can we do about it? How can we minimize dexamethasone-related side effects? See if any of the suggestions on this list help you:

    1. Accept it. You can hate taking dex. But for most of us, the benefits outweigh the risks.
    2. You may be able to minimize insomnia the first night by taking dex right before bedtime.
    3. Since most patients experience side effects for two or three days after using dex, taking an Ativan tablet on nights two and three works for me!
    4. Try to time activities to correspond with your dexamethasone cycle. I know a patient who loves taking dex because it reduces pain and inflammation in her joints, and the "upper affect" helps keep her active for two days. "I can clean my whole house and have energy left over!" she exclaimed. So take advantage of your side effects whenever possible. Can't sleep? Read that book you hoped to find time for. All wound-up and feeling energetic? Clean the garage or those overstuffed closets. Get the idea?
    5. Experiment with your dosing schedule. Of course, as is true with all medicines, changes in dose and schedule should be discussed with your doctor. Maybe my "before bedtime" tip doesn't work well for you. Doctors don't seem to care how you do it, as long as you take 40 milligrams of dex weekly. So maybe taking two or three 4-milligram pills daily works better. Or 20 milligrams on Tuesday and 20 milligrams on Thursday or Friday.
    6. Watch what you eat. Taking dexamethasone can raise your blood sugar dramatically. So don't eat a lot of sweets or other high carbohydrate foods the day after you take it.

    Hopefully, realizing how important dex is to your lifesaving therapy regimen will help you deal with the unwanted side effects. But if things get out of hand, ask your doctor if you might be able to reduce your dose--or stop using dex altogether. Research shows dex loses its effectiveness over time. So if it has been a year or more since you started taking dex, asking your doctor to drop it may make sense.

    Embrace the challenge and try and find ways to co-exist with "demon dex." Your life may depend on it!

    Feel good and keep smiling!

    Pat

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    We have just returned from a series of meetings in Kyoto, Japan: July 6-8, 2012. Kyoto is the site for the IMW (International Myeloma Workshop) meeting in April 2013 so it was especially helpful to have a preview of the city and International Conference Center (ICC) venue. The ICC is a large center and well capable of hosting the IMW 2013 meeting. However, it will certainly be a challenge to organize all the myeloma scientific activities next year in a city known for and annually overwhelmed by visitors to the Cherry Blossom Festivals, which occur at that exact time in April 2013.

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    The recent IMF Japan meetings were a big success. We were honored to participate in the 37th Annual Japanese Myeloma Society (JMS) meetings attended by over 500 Japanese myeloma experts. The focus on myeloma by the JMS is quite remarkable, extending back to the mid-1980s. The scientific part of this meeting proceeded over two days and included several guest speakers: Dr. Paul Richardson (Dana Farber, Boston), Dr. Antonio Palumbo (Torino, Italy), Dr. Ola Landgren from the NCI, as well as myself. 

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    A unique aspect of these meetings is the planned overlap with the IMF Japan Patient and Family Seminar series meetings. Myeloma experts make presentations to the patients, and patients can "sit in" at the JMS scientific sessions. A new feature this year was that eight of the myeloma experts from Japan set aside individual one-on-one consultation times with Japanese patients. This year, over 300 patients attended and were able to take advantage of a broad range of sessions,
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     including four special "commentary" sessions which I was pleased to present on: bone disease, renal problems, novel therapies, and key questions from 2012.


    A unique feature was a concert piano recital by a talented young pianist displaced by the tsunami in the north and now a "refugee" in the Kyoto region. We had the great pleasure to meet this young lady at the IMF Japan dinner reception on July 8, which was the culmination of an amazing, rewarding, and exhausting weekend.

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    IMF Japan continues to flourish and create its own blend of activities and support for myeloma patient throughout Japan with meetings held all around the country during the year. Koyko Joko (photo at left), current chair of the IMF Japan Board, has organized many new initiatives including the involvement of local physical therapy students as volunteers at the patient seminars. The memory of Aki Horinouchi, who founded IMF Japan in 1997, remains strong and vibrant. As always, it was wonderful to see and spend time with Aki's curageous wife, Midori, who continues to help lead and inspire IMF Japan. It is truly remarkable that there is ongoing fundraising, and that each year, one or two research grants are presented to the top myeloma researchers in Japan in honor of Aki.

    We wish great ongoing success to our many colleagues and friends in Japan, as well as our congratulations to Dr. K. Shimizu for what we know will be a very successful and memorable 2013 IMW meeting amid the cherry blossoms! We would also like to thank Masahiro Fukuda for being such a wonderful friend who took such good care of us during our visit.

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    Susie Novis and Masahiro Fukuda

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    This may sound like a skit from "Saturday Night Live," but unfortunately, the connection is real.  The first thing to emphasize is that, although it is real, further investigation is required before cookies are added to the "do not eat" list. 

    The concern comes from a recent large study from the Netherlands, which tracked 120,822 people (a "cohort") since September 1986, and noted 363 patients with myeloma of whom 323 were evaluable for assessment of intake of a chemical called acrylamide, which is present in baked goods, such as cookies, and also French fries, potato chips, and coffee, plus in this study from the Netherlands, Dutch spiced cake (which is high in acrylamide). If you are already thinking about how much acrylamide is in your diet, I refer you to a nutrition-wise blog from the Mayo Clinic which details how to limit acrylamide in your diet. There was a significant correlation between the amount of acrylamide in the diet and the likelihood of developing myeloma for all men, as well as men who had never smoked. Smoking is a source of acrylamide and therefore, a potential so-called "confounding factor." So the correlation in non-smoking men is especially important.

    This is a very large, long-term study from a prestigious group (of epidemiologists) at the VU University Medical Center in Amsterdam, the Netherlands. Therefore, the results need to be carefully considered. However, it is also the first study with sufficient numbers to evaluate acrylamide intake in this fashion. The reason to go to such lengths to investigate acrylamide is that it is known to cause cancer. It is a class 2A carcinogen (IARC, Lyons France), which means that it definitely causes cancer in animals and, since the chemical breakdown is the same for people, most probably also in humans.

    This disturbing finding needs further confirmation and investigation, but raises several important issues, the most pressing of which is:

    Can what we eat or drink cause cancer?

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    We are used to the idea that working in a factory with toxic chemicals or being exposed to toxic environmental chemicals can be dangerous. Using the accepted criteria of esteemed British epidemiologist Sir Bradford Hill, one can systematically assess if a particular chemical or process can be plausibly linked to a particular cancer. As pointed out in an article written by a myeloma patient, Hardy Jones, one must be ever vigilant about toxic exposures in the environment.

    But, the potential for toxic chemicals in what we eat or drink is something new in our awareness and part of a mostly silent revolution over the past several decades. In a new book, "White Bread," Aaron Bobrow-Strain highlights the complex scientific as well as socioeconomic issues with highly processed foods. Supermarket white bread contains a number of chemicals including diammonium phosphate, which is used as a nutrient for yeast, but is also a flame retardant and fertilizer. A few other examples include the flavoring chemicals brought to attention in "Fast Food Nation"-- especially the amazing chemical that provides the special taste of McDonald's French fries. Another new book, "Tomatoland," which discusses the development of the "perfect tomato," also includes sobering examples of toxic exposure. And of course, there is the caramel flavoring in diet soft drinks linked to 4-methylimidazole (4-MI) and the BPA (bisphenol A) from plastic bottles.

    So, the reality is that we need to be very aware of chemicals in food and drinks. Do they cause cancer? Does acrylamide in cookies or other products cause myeloma? This remains to be proven. But this is definitely a wakeup call. Watch what you eat. Check the labels. Fresh, local, and organic are preferred over processed, shipped, and farmed.

    Stay tuned as I explore related issues in coming months. In the meantime here are some blogs I wrote about food and health issues before:

    My Apologies

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    To everyone who subscribes to the RSS feed for the blogs--I owe you an apology. I went back and assigned each old blog to a category (i.e., Dr. Durie's blogs or IMF Community Blogs) to make them easier to search. Consequently, all of you got many emails chronicling my updates. I am so sorry. Don't panic, you won't get any more notices of old blogs. Just new, fresh ones will be coming your way.

    Again, my apologies.

    Abbie Rich
    Web Producer
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    Novel therapy agents are a mixed blessing. Yes, they are helping me and a number of my fellow multiple myeloma patients to live longer. And compared to the harsher cytotoxic agents that many patients with other types of cancer are forced to take, the side effects for most of us aren't so bad.

    But with more of us using maintenance chemotherapy for longer periods of time, the side effects can become harder to manage. This is especially true for those of us who have had a stem cell transplant. I seem so much more sensitive to most any drug I take now.

    Just because a side effect isn't life threatening doesn't mean it can't negatively affect our quality of life. Last week I focused on nausea. This week I would like to share some tips for how to control another common therapy side effect--constipation.

    Isn't it funny how the same drug can have such a different effect on different people? For example, I know several patients who get diarrhea from using Revlimid®, Thalomid® or Velcade®.

    But in my experience, it is much more common for patients who are using these chemo drugs to experience constipation. Mix in a variety of other medications--especially pain killers like oxycodone--and chronic constipation is almost guaranteed.

    Let me share how I overcome my day-to-day constipation challenges.

    Regular exercise can help. So can drinking lots of water. Yet as many of you may have already experienced, simply staying active and changing one's diet may not be enough. But it is the beginning to a long-term solution.

    I start my day with a vegetable smoothie that includes spinach, tomatoes, carrots, celery, cucumbers, kale and milled flax seed. And I eat two or more vegetables at every meal.

    Since I'm on a low carbohydrate diet, eating a lot of sugary fruit isn't practical for me. But blueberries, strawberries, raisins and a few prunes can also help.

    But modifying what you eat by adding a wide variety of fiber-rich foods is only a start. I quickly learned that no matter how many vegetables I ate, it sometimes wasn't enough.

    I never liked the idea of using a product like Metamucil or over-the-counter stool softeners for an extended period of time. Instead, I use a safe and simple substitute--magnesium.

    Magnesium is the number one ingredient in a number of laxatives. It is inexpensive and has the added bonus of helping prevent cramping caused by taking Thalomid or Revlimid.

    You can experiment with how many magnesium tablets to take and when. I'm not a physician, but I believe the worst that can happen to you if you take too much magnesium is a case of the "runs."

    For me, a 100-mg tablet or two with each meal--along with my high fiber diet--is enough to keep me close to regular.
    I already mentioned how I add milled flax seed to my morning smoothie. Flax seed is an amazing food, full of omega 3's and fiber. So is wheat germ. Sprinkling one or both of these concentrated super foods on your cereal is both good for you and can be a "constipation buster."

    Over the years I have received a number of suggestions from readers about ways to overcome constipation. I would like to share a few of those with you now. Because what works for me may not work for you:

      • Drink a large hot glass of water with lemon slice every morning
      • 2 or 3 tablespoons of mineral oil daily
      • 2 or 3 tablespoons of coconut oil as needed. They also agreed adding flaxseed can help
      • Probiotics help prevent the problem before it occurs. Eating yogurt with natural cultures daily is the most common way to build up the live microbial organisms that should be active and present in everyone's digestive tract. I have been told that Kefir, sauerkraut and Asian foods like kimchee, natto, tempeh and miso can all be incorporated into your diet to help build up the natural digestive process
      • Using herbal teas containing rhubarb, aloe, senna or buckthorn
    Try to remember that overusing laxatives and/or stool softeners can make the problem worse. This also applies to the herbal teas I mentioned above.

    Also remember, multiple myeloma patients tend to take a lot of calcium, which can cause your muscles to contract and make constipation worse. Again, magnesium helps counteract this problem.

    All set? Next week, I will suggest ways to deal with side effects caused by "demon dex," or dexamethasone.

    Until then, feel good and keep smiling! 
     
    Pat

    Looking for the Cure

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    I would like to continue our discussion about ways to deal with treatment-related side effects by focusing on nausea and what I call a "sour stomach."

    Nausea is a common side effect among multiple myeloma patients who are undergoing chemotherapy. And almost all stem cell transplant recipients experience nausea following high -dose chemo and the infusion of stem cells.

    Severe nausea should be treated by a physician. Powerful drugs like Zofran and Compazine are often used to help. So is my anti-nausea drug of choice, Ativan.

    But once a patient's severe nausea is under control, he or she is often left with a less intense form of nausea that can linger for days.  Not severe enough to require prescription meds, chronic nausea can be quite unsettling. 

    The same can be said for a sour stomach. In between waves of nausea and an assault by any number of medications, it's no surprise that a patient's stomach can feel out-of-whack and need attention!

    Bear in mind that what follows are suggestions based on my own experience as well as suggestions from fellow myeloma patients. Remember to let your oncologist know before trying any herb or supplement. It's best to err on the side of caution before making any significant changes to your diet or supplement regimen.

    So what do we do to help get our chronic nausea and/or sour stomach symptoms under control?

    •  Let's start with ginger. I can remember my mother always poured me ginger ale following childhood bouts with the flu. And you know what they say:  mother knows best! Ginger is inexpensive and safe.  It can be purchased whole, as a powder, in capsules or processed foods like Ginger Snaps or ginger candy. One of our readers last week recommended drinking hot ginger tea. Great suggestion, Diane!

    •  Ginger is also a powerful anti-inflammatory.  I take two grams of ginger (four 500 mg capsules) daily to help with both.

    • Something as simple as sipping hot lemon water might also be worth a try.

    •  Sucking on peppermints can also help.  I keep a few mints in my pocket just in case my stomach acts-up.

    • If peppermint isn't doing the trick, you might want to try sucking on a Queasy-Pop.  A regular reader of my blog sent me a package and I love them!  Advertised as "the natural way to ease a queasy stomach," these inexpensive and tasty suckers work for me.  You can find a local supplier or order them online at www.queasypop.com.

    •  I previously mentioned that calcium supplements can help settle a sour stomach.  Calcium-based antacids do the trick here.  Look for the active ingredient "calcium carbonate" on the back of the package.

    • Several patients I know swear that eating a banana helps them.  Worth a try!

    • Simply keeping something in your stomach and "grazing" throughout the day can help. Well-cooked rice might be a good place to start.

    • If you can keep it down, yogurt works for some, although I find it to be too high in acid for me, and yogurt can be difficult to digest.

    •  Native Remedies.com describes the herb, Mentha piperita as a "calmative and analgesic herb which aids digestion, prevents nausea and vomiting and promotes the flow of bile."

    • And I wouldn't be surprised if someone hasn't suggested marijuana once they hear you are on chemotherapy. I never did try pot to help with my chronic post-transplant nausea. But lots of patients in states where medical marijuana is legal swear by it.

    • Switching gears, what about acupressure? Some studies suggest wrist acupressure can help manage nausea caused by chemotherapy. One pressure point thought to help nausea is on the inside of your arm, a few inches above the wrist. 

    Any time you are dealing with chronic nausea or pain, meditation and guided imagery might also be worth a try. But if you do, might I suggest enlisting the help of a professional at the start? The same advice applies to using different herbs and things like acupressure, too. Alternative therapies can be incredibly effective, if you know how and when to use them.

    Can you think of any stomach settling tips I might have missed? Please don't hesitate to share them. 

    Next time I will pass along a number of helpful suggestions for those of you that are battling another common myeloma therapy side effect: constipation.

    Feel good and keep smiling! 

    Pat