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Meet Mambo for Myeloma "TEAM FeeBee" No One Fights Alone by Dana Holmes

10/28/2014

FeeBee Andrews is a mom, a daughter, a sister, a cousin, a niece, and a friend. FeeBee was diagnosed with multiple myeloma just last year and is currently receiving treatment. FeeBee is mom to beautiful daughters Abigail and Mackenzie.

Sharon is FeeBee’s mom and leading supporter. When Sharon heard about the Mambo for Myeloma Awareness Challenge, she immediately embraced the essence of the challenge and began posting messages and the link to our Mambo for Myeloma Facebook Page to her family and friends on her personal Facebook page.

We exchanged messages where Sharon shared,

You know at first when FeeBee was diagnosed I was devastated, I cried all the time. I cannot even visualize what she went through. I just know what I went through. As a mother I felt hopeless like what can I do? As a mother we want to fix things, because that’s what we do for our kids. I couldn’t fix this, I still can’t fix this, but it makes me feel good that at least I’m helping get the word out there about this cancer, that affects my daughter and me and her kids and all the family. I feel I’m contributing in some way. I can’t fix this, no I hate this cancer and what it has done to her and all of us. At least I can help and maybe make someone else aware of this cancer. I said if I can educate one person then I have at least done something. I have had several people tell me because of me they now know about this cancer. Besides sitting here crying all the time, I have to fight for her and her daughters. So when I saw this campaign yes I embraced it with everything I’ve got, I will fight till the end for FeeBee.
So dear Dana your mambo in reality saved me.
With love and gratitude, Sharon

Within days, Maria, a very close friend to FeeBee, posted a video to the Mambo for Myeloma Facebook page and to You Tube. It was her interpretation and version of the Mambo for Myeloma. Maria’s video was not a classic Mambo or any type of dance for that matter, but it contained her heartwarming and emotional message to help raise awareness for Multiple Myeloma. She asked others to please help.

Sharon shared Maria’s video with her family and friends and used it as the basis for her TEAM FeeBee Mambo for Myeloma Awareness Challenge. In just a few weeks, Team FeeBee has created a dozen videos in honor of FeeBee and have reached people beyond the Multiple Myeloma Community.

Many of the participants in these videos don’t even know FeeBee, but they danced for her and are helping our Myeloma community raise awareness.

We see a group dance at a BBQ, a solo dance in front of hundreds at the Bakersfield, California Pride Festival, which included an interview with a local newscaster, a grandmother and granddaughter dancing to the latest pop song, a family doing a parody of a popular music video, a young 11-year old cousin creating a play using her stuffed animals and dolls to deliver her message, Maria’s sister created a video delivering her message using notes, Sharon’s best friend from the time they were 16- years old strumming a guitar and singing a beautiful song, friends at a Halloween party singing karaoke to deliver their message … Each video is unique, no two are alike, but each carries the same message….Help spread awareness of multiple myeloma.

Here are a few of Team FeeBee videos. You can see how very unique each is.

Click here or http://www.youtube.com/watch?v=KLocbDA5Pk8
Click here or http://www.youtube.com/watch?v=JGMSoVY_cjw
Click here or http://www.youtube.com/watch?v=uKOVPH5mog8

Team FeeBee is undoubtedly the team to emulate! This is how we can carry this forward. Do what you want to do in your video, no “mambo” is required. Just do what feels right for you.

Make a sign – Mambo for Myeloma – and display it clearly and prominently in your video to help those who have never heard about multiple myeloma before see the words so they will remember it.

Then get ready to do YOUR thing.

Pick some music, any music works, make it YOUR favorite….

THEN cheer, dance, don’t dance, shoot some basketball hoops, score a soccer goal, swim a lap or two, speak from the heart, use just your left two feet, hula hoop, line dance, dance at the finish line after your walk or race, grab some friends for lunch and mambo off that delicious dessert, do a handstand, Zumba, video your dog dancing, attend an International Myeloma Foundation Patient & Family Seminar and dance with the multiple myeloma specialists… whatever!

Here’s a fun “crowd” Mambo challenge from the International Myeloma Foundation, which was done at the Short Hills Patient and Family Seminar: http://www.youtube.com/watch?v=MDbLPQKo2Eg

The Myeloma Crowd and CrowdCare Foundation will Mambo for Myeloma at their Myeloma Beach Party in Fernandina Beach, Florida, March 20-22, 2015! But you really DON’T have to WAIT until then, do one now and do one again at the beach! There is always room for one more Mambo for Myeloma!

You can also include a request for folks to make a donation to any one of the Multiple Myeloma Foundations who are researching a cure if you would like to make this a fundraiser. By raising Awareness, we build a bridge to raise funds for research. Most people will more likely contribute to a fundraiser for a disease they are familiar with. Increasing awareness about Multiple Myeloma in the general population will help with these efforts.

Add the Mambo for Myeloma to your existing Fundraising Events as a way to continue increasing awareness once you have crossed that finish line in your race or walk, or raffled off that last basket of cheer ! Send your attendees home with the Mambo for Myeloma Awareness Challenge! Keep your efforts going strong until it is again time for them to sign up for your next event! It is a great complement to any effort!

We don’t all have a way to get to these actual events as it may include travel, but we call all raise awareness, no matter where we live. Our Mambo for Myeloma Awareness Challenge is perfect for this!

Most importantly, DO it YOUR way. Help INCREASE AWARENESS FOR MULTIPLE MYELOMA in a way which is fun and very easy to do. Anyone can do our Mambo for Myeloma Awareness Challenge, there are NO barriers to our challenge.

And then ask your family and friends to support you as Team FeeBee is supporting her. Start your own Team, join the Mambo for Myeloma Team and do YOUR Mambo any way YOU like! WE leave the details up to YOU !!

The Power of One Becomes the Power of Many. WHO WILL YOU DANCE FOR?

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It Is So Hard To Be The Family and Caregiver To A Cancer Patient!

10/20/2014

8 Comments

This became up close and personal when this myeloma patient became a caregiver to his wife who was diagnosed with breast cancer. My wife Anita had always thought I was so strong as I went through 2 stem cell transplants and 8 bouts of high dose chemo (the hair loss kind), and 3 cases of pneumonia, and one case of sepsis. However, I found I melted into uncontrollable tears when I felt helpless with little to no ability to make her better. When it is someone you love it is much like a chunk of your heart is being ripped from your chest. When you are around them you try to hold it together so you can be strong for them, but when you get by yourself is when the emotions run wild. Thank God for the support and comfort the caregiver provides while under such mental and emotional stress.

I recently found a similar situation when my pet dog Sadie was just diagnosed with Lymphoma. It is amazing how your pets become part of the family, and not "Just a Dog"' For some who have followed me and my blog over the years Sadie also starred in Myeloma Man's Christmas special as Sadie the Brown Nosed Rain Dog.

She has not eaten for 6 days, can not hold down any food and has diarrhea, and is a very sick girl, Anita and I shed a lot of tears as we and the doctors just try to stabilize her. I have done my research on line and found dogs can get chemo, but in dogs it only provides a life expectancy of one year. If we go to a canine oncologist their CHOP protocol would be very expensive. But before anything her condition must be stabilized first. She is one month shy of 12, and they say that her life expectancy averages 11 years or between 10 and 12 years. So some might say we should just let her go, but that is just so hard to do with a dog you love and is your best buddy.

It is during this most recent event where my wife said that she and my daughters would have a group breakdown when they were outside the ER and I was on continuous dialysis with myeloma and end stage renal failure. But when they came into the room they would have gained their composure and be my strength. You just has to love and thank God for the FAMILY and CAREGIVERS of Cancer Patients.

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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Why do people die from Multiple Myeloma? Lack Of Awareness?? It Is Complicated!!

10/6/2014

39 Comments

The Creativity of the Myeloma Specialist SAVES LIFE!

I first wrote on this subject in 2012, and I thought it time for an update. I still feel that many people die sooner than they need to, and still do not understand why there is such a difference between what is and what could be. The what could be is that many centers have patients who live for an average of 10 years or more, and the average life expectancy for all multiple myeloma patients is just 4 years based on the most recent National Cancer Institute survival data. So why the big gap between the two? Some of the reasons are the following:

1) The miserable Lack of Awareness of Mulitple Myeloma, the symptoms,and the complexity is just sad, and contributes to delayed and incorrect diagnosis.

The NHS or National Heath Service in the United Kingdom has some of the best historic data that exists for Multiple Myeloma. They did some research and found that only 3% of the general population has ever heard of Multiple Myeloma, and if you talk to most myeloma patients they will tell you the first time they heard of it was at diagnosis. You have heard of leukemia and lymphoma, which are blood cancers, but not Multiple Myeloma? This lack of awareness translates into what I call the Multiple Myeloma Catch 22 (A can't win situation). With multiple myeloma the time from first symptoms to diagnosis for 25% of patients takes over 306 days to diagnose. The average life expectancy for myeloma patients if not treated is 279 days. Because of this lack of awareness by the general public and the general practitioners, this group of 25 percent of patients are "Dead at Diagnosis".

If you find yourself in this group of patients, do not delay, and get to a skilled multiple myeloma professional immediately. You have no time to leave your care in the hands of a local oncologist. You need expert care immediately.

Awareness is so important, we now have a number of initiatives in place to try to get awareness up from the miserable 3% of the population to 90% or more. This is a huge mountain to climb, but we have Mambo For Myeloma and Songs For Life awareness programs started by myeloma patient advocates. Please participate in these programs so that we might raise awareness, save life, and raise funds for a cure.

2) Quality of Care is of Utmost Importance, including Supportive Care

Some early death is understandable. I have seen patients who have been given Decadron as their only care, and I know this is such a substandard treatment. Then there is the patient who chooses to only do holistic treatment, or the patient who chooses no treatment, because his faith will heal him. This was their choice, and I can understand it, but I certainly do not agree with these choices, and unfortunately the outcomes were inevitable. And one reader commented that it is caused by the lack of health insurance, and I agree that this has an impact. However, many myeloma patients have access to Medicare, and only 16.3% of the US population does not have health insurance. The differences in the death rate are not 15 or 20%, but 200 to 1000%. So these cases I believe are not the norm, and account for only a small amount of the difference. I can only therefore submit to you that this difference must be in the quality of care.

There are a number of people who somehow seem to beat the odds. Mike Katz, from the IMF(International Myeloma Foundation) is a 20-plus year survivor. Does the fact that he is aware of all the latest and greatest myeloma discoveries weigh at all in his longevity? Pretty darn good move Mike! Or Barb Hammack (who is no longer with us) but survived for 20-plus years and was a member of a myeloma patient to patient forum. Her doctor happens to have gone to school with Dr. Berenson, and Dr. Berenson, a myeloma specialist from LA, has some of the best survival statistics in the world. Are you starting to get the connection?

The point here is that there is a big difference between the skills of a myeloma specialist, and that of your local oncologist. Andrew Shorr of Patient Power had an interview with a Dr. Bensinger( a multiple myeloma specialist) and asked the question about whether patients should seek a second opinion. His reply "I do think it's very important that patients with newly diagnosed myeloma consider a second opinion. And the reason is that this is not that common a disease. Despite the increased awareness of the disease in the community and among physicians, this is still a relatively rare disease. There's only about 17,000 new cases in the US. It's only one percent of all cancers and only ten percent of all blood cancers. And so it's a relatively uncommon disease, and I think there's so much new information out there that even practicing oncologists can't always keep up with the new information. In addition, they should be made aware or least the patient should be made aware of possible trials that are available to them. That's how we've made all the progress in the treatment of this disease, is through clinical trials." So if this belief exists in the Multiple Myeloma specialist community, then why is there still such a disparity in outcomes? Sorry folks, I can only speculate. Much of this difference must be because of the leading edge knowledge of the myeloma specialists at these exceptional facilitates, and their focus on supportive care. They have a great offense(specialists) and defense(supportive care).

Part of it may be that the disease is just so rare that the dissemination of this information would never reach the light of day if not for organizations like the IMF(International Myeloma Foundation). How many people know that March is Multiple Myeloma awareness month? The IMF has been at the forefront of this education process, but unfortunately the National Cancer Institute life expectancy numbers continue to lag those at the best institutions. So if this life saving information is not reaching the myeloma patient community, how can we improve the awareness?

In this day of the internet, Facebook and Twitter, I therefore recommend that each of you send this post to your Facebook friends and Twitter followers, just to let them know about Multiple Myeloma and ask them to participate in the Myeloma Awareness Programs (Mambo for Myeloma and Songs For Life). I will almost guarantee that one of the people you send this to will know someone with a myeloma patient in their circle of contacts who could benefit from this information. Because I have found that "Knowledge is power" and "Ignorance can kill!"

You will find more information on multiple myeloma if you go to the web site www.myelomasurvival.com or follow me on twitter @grpetersen1. God bless all who have to be on this journey/ editor@myelomasurvival.com

39 Comments

Cancer Is An Older Person's Disease. So Where Is AARP? - At 69 Multiple Myeloma Is Near The Average Age Of 67 For All Cancer Patients.

10/1/2014

1 Comment

I had often thought multiple myeloma patients were older than the average cancer patient, with an average age of 69 years at diagnosis. But I recently searched for the average age of all cancers and found the average cancer patient is 67 years old at diagnosis and this includes all the childhood cancers as well. So cancer is an AARP Cancer! I guess that is to be expected, in that over time we have had exposure to all sorts of cancer causing agents which have been banned in our lifetime as well as the ongoing attack from processed food, additives, coloring, etc. Also with time our immune systems tend to be less vibrant and as a result are less able to negate these attacks. The National Cancer Institutes SEER data can be viewed if you CLICK HERE.

I get the AARP publications and they are very informative about many of the issues older people are confronted with, however I do not see a focus on education of its members on the need to be aware of the risks to this population from heart disease and cancer and what tests might just help to identify heart disease and cancer in the early stages when treatment is far more likely to be effective. We do need to know about our retirement options and how to sign up for Medicare and supplemental insurance, BUT HEY how about the most likely cause of our death which is heart disease and cancer. I recently read that some 50% of all cancers are found in the latter stages of progression, making it much harder to treat and perhaps cure. What this means to me is the AARP generation is not getting the annual check ups and tests which would highlight possible cardiac and cancer risks, nor are their General Practitioners educating them on what symptoms may be a sign that they may have cardiac issues or cancer and should get to a doctor for tests.

Given that so few people(5%) have ever heard of multiple myeloma, I think this post will fall on very few ears. But, I still see the value in helping just one person find this post helpful and goes to a doctor and their diagnosis of heart disease or cancer is early in the prognosis, I feel my efforts have had value. I do hope that someone from AARP sees this and goes DAAH! We need to focus on the two biggest reasons we lose our members.

Just as an aside, I was in the emergency room at Mayo Clinic on Monday. I am a nearly 9 year survivor, but this %^^&&^%$ myeloma will raise its ugly head to let you know who is in control. I got a cold and 12 hours later it had gone to my lungs and I have pneumonia, and based on my history I am just 12 more hours from being septic. This is now the 4th time I have gone through this, once septic and near death and the next three times I took Tamaflu at first symptoms, then antibiotics at the first sign of a temperature, and then to the emergency room with a temp of 100.5, then IV antibiotics and a script for antibiotics for when I go home. Like I have said more than once, the number one cause of death is pneumonia, and you must go to the ER at 100.5 temperature, or you could die. So always error to the side of caution. I have lost too many myeloma friends to infection, and know that this might just save your life!

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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Meet Mambo for Myeloma "TEAM FeeBee" No One Fights Alone by Dana Holmes

It Is So Hard To Be The Family and Caregiver To A Cancer Patient!

Why do people die from Multiple Myeloma? Lack Of Awareness?? It Is Complicated!!

Cancer Is An Older Person's Disease. So Where Is AARP? - At 69 Multiple Myeloma Is Near The Average Age Of 67 For All Cancer Patients.

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