Blog Posts

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?

0 Comments

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

8 Comments

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/ [email protected]

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

1 Comment

If No One Hear's Us, and 95 % Have Never Heard Of MM. Why Do Myeloma Advocated Just Continue to TRY, TRY, TRY!!!

9/25/2014

2 Comments

l have been trying to have an impact on improving the life expectancy for multiple myeloma patients, but in the three years of trying and providing this blog to help to educate the myeloma patient community, the average life expectancy has remained the same. So I often ask myself why do I keep trying when I have not had an impact on the outcome. Then I come across someone like Jack Aiello who has been a patient advocate for 20 years and during that time the life expectancy has gone from just over 2 years to 4 years, and I find I am just entirely too self centered and as always impatient. With that in mind I provide a reprint of a Patient Power article by Jack. Thank God we have Jack and I hope we can continue to find advocates with the same commitment to the myeloma patient community.

Patient Power Article by Jack Aiello

I’m often asked, “If you were diagnosed 20 years ago and you are no longer getting treated, why do you still keep involved facilitating a support group or attending a myeloma seminar?” My answer? “Because I remember.” I remember being told of having cancer called multiple myeloma…and being scared about the word “cancer” of something I had never heard of. I remember that empty feeling of having so many questions but no one to talk to. I remember being confused by the terminology…how can having too much protein be a bad thing? I remember being overwhelmed and being told to begin chemotherapy with a 96-hour infusion in the hospital and wondering how would I feel? I remember a social worker walking into my hospital room and suggesting I attend a Leukemia Society support group meeting that night in the hospital.

I was reluctant to attend…I didn’t have leukemia and am not a “touchy-feely” person, which was my perception of a support group. However, I dragged my IV pole of medications and went to this meeting where I met my first fellow myeloma patient named Jim—finally, someone who had the same disease as me. He provided me with several resources, including a myeloma-specific support group, which provided me with so much information by sharing patient experiences and inviting doctors to speak. And later that year, I attended an IMF Myeloma Patient Seminar and was blown away being among 200 other myeloma patients and caregivers getting further education about this disease. Finally, I was beginning to feel knowledgeable about this disease and empowered to participate in determining my treatment path.

So to this day, whenever I meet with one or a group of myeloma patients, I make the following plea: A newly diagnosed patient needs to get educated and learn about treatments, as well as the myeloma markers and other information a doctor is looking at to determine treatment response. Patients need to get copies of their labs, to ask questions, to talk with other patients at support groups, and to not be shy about getting second or third opinions from an oncologists specializing in multiple myeloma.

And if I’m speaking with experienced multiple myeloma patients, in addition to all of the above, I ask them to think back to what it was like when they were first diagnosed…with a disease they had never heard of and so much new terminology, combined with the fear of having cancer? I ask them to share their experiences at a support group meeting or one-on-one with other patients. Why? Because I remember. And, I’m looking forward to meeting more myeloma patients in person at the upcoming Patient Power forum in Houston. If you can’t make it to Houston, I hope you’ll join Patient Power in Denver the following week.

What do you remember about being diagnosed? Tell me in the comments section.

Wishing you the best of success,

Jack Aiello

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

2 Comments

Multiple Myeloma Specialists CAN Save Your Life! Dr. Tricot Is A Case In Point!

9/18/2014

5 Comments

I often say you must have a multiple myeloma specialist on your team to be able to beat the published average life expectancy of 4 years for multiple myeloma. But then we have a Cure Panel with someone like Dr. Guido Tricot, and you become aware how very true this statement is. Myeloma Speciaists know so much about this disease they almost don't know how much they know.

As a myeloma patient advocate, I would hope to think I have gained a fair amount of information about myeloma in the last 8 and one half years, however I learned more in one hour with Dr. Tricot than I had in a very long time. I thank Dr. Tricot for that education.

If you did not have the opportunity to hear Dr. Tricot's Cure Panel Broadcast you can hear it if you CLICK HERE! The three biggest takeaways for me about this broadcast were as follows:

1) Dr. Guido Tricot is brilliant (ergo the large head), and has an uncanny way of bringing the most complex of concepts to a level where the average human can understand. A skill which many brainiacks do not have. His program provides a life expectancy at least 2 1/2 times longer than the average published by the National Cancer Institute. This is one of the best survival rates published by anyone in the world. Pat Killingsworth has put together an excellent blog post focusing on Dr. Tricot's treatment regimen and you can read it if you CLICK HERE!

2) He explained to me for the very first time that the dual transplant is not a double dose of high dose chemo, but a split dose of high dose chemo. What I mean by this is that high dose chemo is used for young leukemia patients, but the same dose would likely kill an older myeloma patient. So they split the dose into two phases to limit the toxicity. For me with kidney damage they spit the dose again because of my comorbidity.

3) MRD is a great tool in measurement, but because it is tested on the bone marrow it has a key limitation. Myeloma is very heterogeneous in the bone marrow, and as a result the samples can be good or bad just because of the location of the biopsy. Like Nick van Dyk mentioned, it is a lot like the spots on a Dalmatian, depending on where you biopsy it may be white or black. As a result MRD must be used in conjunction with M spike, light chain tests, MRI and PET tests, and tests of protein in the blood and urine to be sure a person is cancer free. He did mention they are working on an MRD test of the blood and not the marrow, which may have more value in the determination of MRD, without which heterogeneity of the location will always be an issue.

Please listen to his presentation, because it could be the difference of 10 years of survival or more as compared to the national average of 4 years. 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

5 Comments

Will We Have A Goldilocks Treatment Regimen for Multiple Myeloma? Dr. Tricot Discusses MRD or Minimum Residual Disease

9/15/2014

0 Comments

The treatment of multiple myeloma has always seemed a little like playing darts with a blindfold on. We never really know if we have hit the target, or if we did, how close we were. This is because we have had no measurement of disease burden which would let us know if we have achieved a full molecular remission. We are told by many that it is incurable, and there will always be some of those nasty myeloma cells hiding someplace in our bone marrow, or hiding in an inactive lytic lesion, just waiting to rise up and kick us in the teeth one more time. Dr. Tricot states in one of his publications that when patients reach a strictly defined CR, they still may have up to 1 billion myeloma cells remaining.

But now there is a hope that we may have a new measure of disease burden, called MRD or Minimum Residual Disease. Dr. Guido Tricot will be discussing MRD and its implications for the treatment of multiple myeloma. His work on improved disease measurement goes back over a decade, and he was one of the researchers at UAMS who developed the Total Therapy protocol. The IMF's (International Myeloma Foundation) Black Swan initative is centered on finding a MRD measurement method which will tell when the disease has been eradicated down to the point at which CURE is achieved.

Dr. Tricot will be discussing the topic of MRD on the Cure Panel September 17th broadcast at 6:00 pm EST. You can sign up to ask questions on air, get details on how to listen live, or listen to a later broadcast if you CLICK HERE.

So why do I think this may just be a way to come up with a Goldilocks Regimen? Without a measurement tool with the accuracy to show levels of disease so low that cure is achieved, we will continue to have protocols that go from More is Cure to Less is Best.

With MRD we should be able to determine if a treatment is working, and have an idea as to when the treatment has achieved the optimal result. We have an opportunity to make sure the treatment is NOT TOO HARD, NOT TOO LITTLE, BUT JUST RIGHT. Like an old boss of mine once said, "You can not manage that which you do not or can not measure."

Finally we have an accurate measure with MRD .I believe we are at the cusp of a new era of myeloma treatment with a CURE within our grasp.

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

0 Comments

Yes We Can! Myeloma Patients Can Help Find a Cure. By Pat Killingsworth

9/10/2014

0 Comments

Pat Killingsworth is a myeloma patient advocate, and is on top of all of the major advances for myeloma, but like all of us is frustrated with the snails pace speed by which advances are made. In the following article Pat outlines a new method which he feels will speed up the treatment development process. Like Pat noted, with an average life expectancy of 4 year for myeloma, we can not wait 10 years for a cure, we need it now!

Article originally posted on www.multiplemyelomablog.com

Yesterday was a game changer for me. A reassuring visit from my guardian angel, then an exciting and energizing hour long, on-air conversation with myeloma patient and activist, Jenny Ahlstrom.

As far as myeloma patient media types go, Jenny is relatively new on the scene. But she’s never let convention get in the way or slow her down; never worried about whether or not she’d be accepted into the “club.”

Don’t let her measured, soft spoken demeanor fool you. Jenny is a real go-getter! With the help of her husband, Paul, she has decided to focus her efforts on finding a cure for multiple myeloma. Not a way to buy us a few more months or years. But a real cure.

“The system is broken. There has got to be a better way–a faster way to do this.” Jenny told me recently. She repeated that sentiment last night.

The hour started a bit slowly; Jenny admitted later that she’s used to being the one asking the questions (on her mPatientwebcasts), not answering them. And I’m afraid I didn’t do her any favors; I was still taken aback by my very real supernatural experience an hou before we started.

But if you give it a chance, I think you’ll find that Jenny does what so many only talk about or claim to do: she really is able to think outside-the-box. Jenny’s idea to help empower patients to fund clinical trials that specifically benefit them is ground breaking. I really think it can make a difference. Give our conversation a listen when you get a chance and see what you think: we want your feedback!

http://www.curepanel.carefeed.net/event/rsvp/Ways-Patients-and-Caregivers-Can-Help-Boost-Myelom/46/

What do I mean by “making a difference?” I mean that if a group of us get behind one or more targeted clinical trials, it may help us live longer. You and me, not the next generation of myeloma patients–or the generation after that.

So I’m stepping up. I have agreed to become a member of Jenny’s Patient Advisory Board. We will be working with an impressive group of myeloma researchers and clinicians to help figure out which clinical trials might help us NOW, not five years down the line. Once we find two or three exceptional trials, everyone will have the opportunity to help drive one or more of them forward. The concept is called “crowd funding.” 100% of money donated will help pay for the selected research.

Our initiative will be rolled out at ASH in San Francisco in a few short months. With a lot of hard work–and a little luck–one or more key clinical trials could be identified as early as February.

FAST! EFFICIENT! Unhindered by politics or agendas set by people that aren’t on “myeloma time.”

Why not? Why not try and find a better way?

Feel good and keep smiling! Pat

0 Comments

Mambo For Multiple Myeloma Or How To Improve Awareness, Save Life, and Fund Research

9/2/2014

5 Comments

Everyone knows how successful the Ice Bucket Challenge has been for ALS, and I was one of the thousands who took the challenge and contributed. If you want to see a grown man yell, you can see my replay if you CLICK HERE. Most people have heard of ALS or Lou Gehrig's disease, even before the ice bucket challenge. Now after the challenge, they are on their way to obtaining $100 million or more to help to find the cure for ALS. ALS has 5600 newly diagnosed each year, however Multiple Myeloma has 23,000 newly diagnosed each year and 95% of people have never heard of the disease. One in Five patients die within the first 2 months of diagnosis, mainly from a delayed diagnosis and lack of knowledge about myeloma. Dana Holmes is determined to try to duplicate the success of ALS for myeloma and has just recently started a challenge called Mambo for Multiple Myeloma.

Dana, all of us with this disease thank you for your efforts to bring awareness to the general population, and to provide a method to fund research for a cure. Like I mentioned to you, I would sky dive for myeloma, if it could in any way help to promote a cure and move our average life expectancy beyond the current 4 years. You can participate in the Mambo Challenge if you CLICK HERE.

Here’s how it works:

Have you, friends or family take videos of their dance moves in honor of myeloma research – any kind of dance move works!
Mention that it is for Multiple Myeloma (we don’t want it confused with melanoma)
Challenge other friends to do the same
Upload your video to You Tube and tag it as Mambo for Multiple Myeloma, then share it on the Mambo for Multiple Myeloma Facebook Page
Donate to one of the great myeloma organizations below

To View some of our Mambo for Myeloma heroes CLICK HERE.

There is no “right” dance move and interpretive dance is welcome. Do it as a group, go solo or take a dance move selfie and post. Can’t do a video? No problem! Just take a dance move photo and post it to the Mambo for Multiple Myeloma Facebook Page. Want to help spread the word? Help raise myeloma awareness by “liking” the page and sharing it. https://www.facebook.com/pages/MAMBO-for-MYELOMA-Awarenesss-DANCE-Challenge-Starts-HERE/1458033874458925?sk=timeline

Do your dance today and choose one of the MULTIPLE MYELOMA research foundations/organizations who are trying to find the cure!

THE CROWDCARE FOUNDATION – THE MULTIPLE MYELOMA FUND

THE INTERNATIONAL MYELOMA FOUNDATION (IMF)
The IMF InfoLine 800-452-CURE (2873)

MULTIPLE MYELOMA RESEARCH FOUNDATION (MMRF)
MMRF Patient Support Center (866) 603-6628
MMRF General Information & Donations (203) 229-0464

MMORE FOUNDATION

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

5 Comments

OUTSTANDING Survival Rates For High Risk Multiple Myeloma At Emory! Is Atlanta The New Little Rock For High Risk Myeloma?

8/22/2014

2 Comments

If you missed Emory's Dr. Sagar Lonial's broadcast on High Risk Myeloma, you missed an excellent and informative program. You can still hear a rebroadcast of the program if you CLICK HERE!

I do think the major takeaway from Dr. Lonial's presentation was the excellent results he and his team at Emory in Atlanta have achieved with the high risk group of patients. At 3 years 93% of patients were alive vs. the numbers frequently quoted as 50% survival at 2 years. It was my previous thinking either Mayo Scottsdale or UAMS would be the center to unlock a major breakthrough for high risk multiple myeloma treatment. UAMS which has had such remarkable success in the treatment of low risk disease has not been able to repeat this for high risk myeloma and quotes their average life expectancy of 2 years for the high risk cohort of patients.

There are a number of philosophies for treatment of myeloma, from less is best to more is cure for low risk disease, and many have proven successful for the low risk patient. However, no regimen has yet to be developed which has proven successful outside of a clinical trial. Dr. Lonial believes the patient needs a plan and the plan should be executed. No risk adaptive approach for induction, or trying Vd ,then Rd then Cybord, then VRD, etc., or the sequential approach. The Emory philosophy for low and high risk myeloma is as follows.

1) Of great importance is to conduct the cytogenetic testing like FISH tests to determine if the patient is high or low risk.
2) Hit myeloma as soon after diagnosis as possible with the best and most effective approved first line treatment, which Dr. Lonial believes is RVD. (Revlimid, Velcade, and Dexamethasone)
3) If transplant eligible conduct an early Auto Stem Cell Transplant, but only one transplant. Emory feels one of the characteristics of high risk disease is the DNA is highly unstable and exposing the myeloma to high dose chemotherapy, like Cytoxan and Melphalan, will increase the damage to the already unstable DNA.. This will create more aggressive and harder to treat clones.
4) Transplant is always followed by RVD consolidation, and 3 years of maintenance. This is where the risk assessment comes into play. If high risk or intermediate risk the maintenance is RVD, (Revlimid, Velcade, and Dexamethasone). If low risk it would be just Revlimid. It is three years of maintenance because his earlier work showed that relapse often followed the early discontinuation of maintenance.

The average life expectancy has yet to be reached, but my educated guess is that it will approach 5 years or more. This will be more than twice that which other centers reported. In addition, it is a formula which should be able to be followed by any of the world's multiple myeloma specialists.

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

There is so much more in Dr. Lonial's broadcast and I highly recommend you listen to it in its entirety. A short bio of Dr. Lonial follows:

Sagar Lonial MD

Dr. Lonial is internationally recognized as a leading authority in multiple myeloma treatment and research.

Professor and Vice Chair of Clinical Affairs, Department of Hematology and Medical Oncology - Emory University School of Medicine
Vice Chair of the Eastern Cooperative Oncology Group - Myeloma Committee
Chair of the Steering Committee - Multiple Myeloma Research Consortium

As a medical oncologist at the Winship Cancer Institute, Dr. Lonial treats patients with multiple myeloma and is a lead member of the bone marrow transplantation team and clinical trials team. He is involved in numerous professional organizations including the American Society of Clinical Oncology, American Society of Hematology, and the American Society for Blood and Marrow Transplantation. Additionally, Dr. Lonial is on the board of directors for the International Myeloma Society, and on the scientific Advisory Board for the International Myeloma Foundation.

He received his medical degree from the University of Louisville School Of Medicine. He completed his internship and residency at Baylor College of Medicine in Houston, Texas, followed by a fellowship in hematology and oncology at Emory University School of Medicine in Atlanta, Georgia.

2 Comments

<<Previous

Forward>>

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.

If No One Hear's Us, and 95 % Have Never Heard Of MM. Why Do Myeloma Advocated Just Continue to TRY, TRY, TRY!!!

Multiple Myeloma Specialists CAN Save Your Life! Dr. Tricot Is A Case In Point!

Will We Have A Goldilocks Treatment Regimen for Multiple Myeloma? Dr. Tricot Discusses MRD or Minimum Residual Disease

Yes We Can! Myeloma Patients Can Help Find a Cure. By Pat Killingsworth

Mambo For Multiple Myeloma Or How To Improve Awareness, Save Life, and Fund Research

OUTSTANDING Survival Rates For High Risk Multiple Myeloma At Emory! Is Atlanta The New Little Rock For High Risk Myeloma?

Author

Categories

Archives