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Hot Myeloma News - Bart Barlogie Will Practice Elsewhere! Mount Sinai in New York? Why Not Everywhere?

5/15/2015

Recent Update 7/15/2015: It's official Dr. Barlogie has contacted me and let me know it was OK to report he will be seeing patients at his new venue at Mt. Sinai in New York starting in September of 2015. Nick Van Dyk has written an update on his web site which you can read if you CLICK HERE. I will provide additional information which would be important to existing patients and new patients as soon as it is made available to me.

I recently received a letter confirming that Dr. Bart Barlogie will not retire and ride off into the sunset with new leathers and a new limited edition Harley Hog. The official line is "While Dr. Barlogie resigned and retired from UAMS, he is looking to start practicing soon elsewhere." It seem so out of character for him to leave a practice he has nurtured from nothing to a world class organization, and sad to know there will be a UAMS without Dr. Barlogie. I am not privy to the goings on with the leadership of UAMS, however it looks to me like personalities and politics must have had a part to play. So now in the background you should be hearing the music by The Clash - Should I Stay or Should I Go? CLICK HERE for a listen as you read the letter below. That is a question each patient currently treated by Dr. Barlogie will have to make for themselves. For some it may be location, location, location. If he practices in Germany then my new doctor is Dr. Van Rhee, and if he moves to Jacksonville, where I live then it would be a no brainer. Nick Van Dyk does an outstanding job of going through the decision process that he will go through for his choice of treatment for the future. CLICK HERE to read it. After you read the letter I will let you know what I would love to see the good doctor do for his encore.

I often wondered what would have happened if Dr. Barlogie would have taken his show on the road. Bart in one location seemed to be such a waste of talent. If he would have used UAMS as a central facility and had mini McMIRT centers all over the county. I know UAMS and MIRT was a tremendous economic benefit for Little Rock and for Arkansas, so there was little to no incentive for UAMS to push this idea. But now there is a blank slate, and what if there were McMIRTs all over the county and as is the case now all of his patients would outlive the current average of 4 years and meet his current average of over 8 years. If like Walmart did in retail he could take the majority of the myeloma patients or just 12500 or half of the total, that would be 50,000 years of life saved each and every year. So many lives to save and so few qualified multiple myeloma specialists to do it. I can dream can't I. It could be expanded to all blood cancers and be a McMIRT, McMayo, McAnderson, or McFarber Blood Cancer Center.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Dateline NBC - Multiple Myeloma -Tom Brokaw's Life Interrupted?

5/8/2015

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If you have not seen Tom Brokaw's Dateline NBC special of his multiple myeloma journey, you should. It may have done more to shine a light on a disease that has been invisible to the general population. A study in the UK uncovered only 3% of the public has ever heard of myeloma. Everyone has heard of leukemia and lymphoma, but not multiple myeloma, and myeloma is one of the three most common blood cancers. As a myeloma patient, I believe it is a must see event. You can watch a rebroadcast of this program if you CLICK HERE. As a followup to the broadcast Katie Couric conducted an interview with Tom Brokaw and you can see it if you CLICK HERE. Tom indicates he hopes he can do for myeloma and cancer what Katie has accomplished for colon cancer. Tom, we your fellow myeloma patients, hope and pray that you do bring myeloma out of the shadows, and we thank you so very much for becoming a visible and vocal myeloma advocate.

One of the first things I came to understand is that the title "My Lucky Life Interrupted" is such an understatement, and Tom says maybe that was due in part to his Anchor Man mentality.   His life was not just interrupted, it was saved. One in 5 patients die in the first 2 months after diagnosis. Two in 10 have what is called high risk myeloma, which has a 2 year life expectancy. First, he had back pain and it was misdiagnosed as either age-related or just arthritis. Based on his pain, he had active myeloma, and even with his resources,and I assume excellent general medical care, he was misdiagnosed. In the headline he said his life was LUCKY, and oh how lucky it was in that Myeloma, if untreated, has a life expectancy of just 7 months. Soon after this misdiagnosis, he was lucky enough to go to the Mayo Clinic for his annual checkup, and a low white blood cell count along with bone pain raised a red flag to people at one of the premier health facilities in the world. A skilled and knowledgeable General Practitioner scheduled additional tests, which resulted in the correct diagnosis of multiple myeloma. What if he had not gone to a Mayo, but a local hospital for his checkup, like most people in this county do? Would they have caught this or just chalked it up to an infection or arthritis?

Some other interesting takeaways that I had were the following:

- Tom mentioned that with his resources he could travel to the best institutions, pay for whatever services he needed, and be under the care of the most knowledgeable multiple myeloma specialists in the world. In fact he was treated at Mayo, Dana Farber, and Memorial Sloan Kettering Cancer Center, three of the very best in the world. He then asked what about those average or poor people who do not have those resources. It was an exceptional question but was left unanswered. Most patients are of medicare age, and they are required to pay a 20% copay if they do not have supplemental insurance. Tom's RVd regimen for a year can cost between $150,000 to $250,000. This is just the cost of the drugs.   Medical expenses are the number one reason people file for bankruptcy. Without insurance your chance of surviving a myeloma diagnosis are dismal.

- Tom mentions you need someone to be your advocate, and he chose his daughter, who was a doctor, to learn about the disease, to navigate the continuum of varied treatment regimens, find the doctor which provides this regimen, and shepherd the patient through the process. In most cases however, it is the patient or caregiver who becomes the advocate, and a loved one who becomes the caregiver and helps in this process. For many it becomes a family affair- brothers, sisters, sons, daughters, in laws, and friends all who help to ease the burden for the patient and caregiver. I truly was blessed with a small army of helpers.

- Tom used the word remission, however when it comes to multiple myeloma, remission has a far different meaning. In most solid tumor cancers if you are in remission, your tumor has disappeared and if it remains so for 5 years then you are often considered cured. Multiple myeloma, when measured with the best available measurement methods, may not show up in the blood or bone marrow, but millions of individual cells may still be present in the blood, bone marrow, or hiding in bone lesions. Myeloma is rairly truly gone, just undetectable with current methods, unlike the solid tumor definition of remission. More often it returns and does so with a vengeance. Most myeloma specialists call this level of undetectable disease CR or complete response. Newer methods of detection are under development, such as MRD (minimal residual disease), which we all hope may one day be myeloma's true measure of remission.

- Tom did a great job in outlining some of the hardships of myeloma. The agonizing and debilitating pain of bone damage, the loss of height for collapsed vertebrae, the absence of an adequate immune system during both active disease and treatment, and the need for supportive care (antibiotics, anti fungal, antiviral, platelets, blood transfusions, etc.) to prevent the common cold or flu from being terminal to the patient.

I want to thank Tom for not keeping his illness to himself and his family, but helping to bring it out of the shadows. We need general practitioners to understand the symptoms and order the tests to diagnose this disease and save lives. If it can be found early, the American Cancer Society published data shows you can live three times as long if myeloma is found in stage 1 rather than if it is found later in the disease progression or stage 3.

Good luck and may God Bless your Cancer Journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Multiple Myeloma and Nutrition

5/4/2015

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I frequently get questions about the proper nutritional diet for multiple myeloma patients, and I usually refer these patients to Danny Parker. Danny is the go to guy when it comes to those foods that are good for the patient and those that are not good or can in fact cause myeloma drugs to be less effective. Danny has been featured on Pat Killingsworth's web site Living With Multiple Myeloma. On the top of this site is a search box that you can enter Danny Parker or nutrition, and get a wealth of information.    One surprise to me was aspartame usage in which a large scale study stated the following.

The combined results of this new study showed that just one 12-fl oz. can (355 ml) of diet soda daily leads to:

- 42 percent higher leukemia risk in men and women (pooled analysis)
- 102 percent higher multiple myeloma risk (in men only)
- 31 percent higher non-Hodgkin lymphoma risk (in men only)

These results were based on multi-variable relative risk models, all in comparison to participants who drank no diet soda. It is unknown why only men drinking higher amounts of diet soda showed increased risk for multiple myeloma and non-Hodgkin lymphoma. Note that diet soda is the largest dietary source of aspartame (by far) in the U.S. Every year, Americans consume about 5,250 tons of aspartame in total, of which about 86 percent (4,500 tons) is found in diet sodas.

This is just one 12 ounce serving, so just think of the heavy diet soda drinker. However, as a caveat one analysis said the difference may just be due to chance. They must be working for one of the major soft drink companies. A 102% error??? One thing for sure in this study, it pays to be female!

One of Danny's posts shown on Pat's site about nutrition is below for your convenience.

Diet and Multiple Myeloma: Danny Parker’s dietary recommendations Posted on November 26 2012 by Pat Killingsworth | 7,593 views

So, over the last year, we’ve examined many facets of diet and myeloma. Rather than send you looking for each segment, I thought it would be useful to summarize what we’ve learned in one place.

So what are our recommendations for helpful diet from these various sources we’ve covered over the last months?

∙           Increase levels of protein consumption, particularly for fish and soy.

∙           Increase consumption of cruciferous vegetables (radishes, broccoli,   cabbage, cauliflower, watercress)

∙           Eat more fruits and herbs with ursolic acid: apples, basil, cranberries.

∙           Within the diet, emphasize fruits with pterostilbene: blueberries, grapes, acai and rhubarb

∙           Include papaya, pomegranate and pomegranate juice in your fruit choices

∙           Enjoy cooked and stewed tomatoes

∙           Add turmeric and curries to the spices you cook with

∙           Include parsley (agigene) in your diet—parsley pesto, added to soups and other dishes.

∙           Try to use whole grains for wheat, rice and pasta (smooths spikes in blood glucose)

∙           Eat cheeses with Vitamin K2: Gouda, Asiago, Parmesan, Emmenthaler and Jarlsberg

∙           Moderate alcohol consumption (resveratrol containing red wines being a good choice)

∙           Consider a Vitamin D and a fish oil supplement particularly if fish consumption is low

            Don’t forget to consider using a curcumin supplement in consultation with your doctor

Things to avoid or reduce: ∙

.    Asparagus (L-Asparagine)

∙           Fried foods, particularly French fries and potato chips (acrylamide)

∙           Excessively toasted breads and baked goods (acrylamide)

∙           Excessive coffee consumption due to acrylamide (perhaps substitute some tea)

∙           Reduce simple carbohydrates and excess sugar consumption**

∙           Cut down on butter and sweetened dairy products (ice cream, puddings etc.)

∙           Try to avoid highly processed foods, MSG, artificial colorings etc.

∙           Avoid artificial sweeteners such as aspartame (e.g. Diet Sodas)

∙           Avoid Vitamin C supplements, EGCG and green tea on Velcade days

** Particularly important on Dex days; avoid simple carbohydrate includes refined flours and potatoes.

Avoid supplements with Glucosamine or Hyaluronic Acid. Avoid supplements with Glutamine: helps your stomach, but may also help MM cells

Alpha Lipoic Acid: may reduce neuropathy with Velcade, but also may compromise its effectiveness

As one can see from the above, the preferred diet for myeloma patients has much in common with that for diabetic patients—important to target a steady blood sugar. For instance, recent research shows a 20% increased risk of blood cancers from those suffering Type 2 diabetes, pointing to the likelihood that we will do best with a diet similar to those looking to prevent diabetes, particularly if our blood glucose is high. In any case, if you are going to have a carbohydrate or sugar rich portion of your meal, it is better to take these after consuming the salad or protein base so that digestion proceeds slowly and blood glucose levels rise in a smooth fashion.

So, what kind of differences will such dietary changes make? Of course, we don’t know. But each of the recommendations are based on research results from the myeloma community that we have covered over the previous months. Full details, with links, are available there.

However, the suggestion is that following these recommendations—even to make incremental changes to our eating habits—might convey some advantages in our effort to live well with multiple myeloma.

If you’re like me, you’ll take every advantage you can get!

Nutrition is an indispensable part of surviving–and thriving–with multiple myeloma.   How much difference does it make? Hard to tell. If nothing else, it’s something we can control. Eating well helps our bodies withstand continual therapy.

There have been several additions to the lists since then. I’ll focus on them tomorrow.

Feel good and keep smiling! Pat

Good luck and may God Bless your Cancer Journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Hot Myeloma News - Bart Barlogie Will Practice Elsewhere! Mount Sinai in New York? Why Not Everywhere?

Dateline NBC - Multiple Myeloma -Tom Brokaw's Life Interrupted?

Multiple Myeloma and Nutrition

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