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Multiple Myeloma Awareness Month and the world renowned Myeloma Specialists Dr. Hofmeister and Dr. Jan Moreb are providing a FREE second opionion

3/20/2013

Multiple Myeloma - Save Yourself!!!! Dr. Hofmeister, of The James Cancer Center at Ohio State University, as part of Multiple Myeloma Awareness Month, has offered to provide a free second opinion over the phone to a worthy myeloma patient anywhere in the world. As I have stated time and time again a multiple myeloma specialist can double and triple your life expectancy and survival rate. All that is required is that your provide an email to editor@myelomasurvival.com outlining the reasons you might have a need of a second opinion from a multiple myeloma specialist. We will then determine the patient most in need. That it all that is required. Once you have been chosen we will require that you forward all of your required test results to Dr. Hofmeister for his review. If I find that there is a siginificant need I will pay Dr. Hofmeister from my own pocket for one additional second opinion to help "SAVE LIFE". Dr. Jan Moreb of The Shands at the University of Florida has also generous in providing a consult. Dr. Moreb's myeloma program has shown exceptional life expectancy and survival rates. Any other people who would like to contribute can contact me as well.

Dr. Craig Hofmeister has been a member of the Blood and Marrow Transplant Program at The James since 2006. He received his Bachelor of Science in Biochemistry and Molecular Biology from Brown University and his Medical Degree from The Ohio State University. He completed his internship, residency and fellowship training at Loyola University Medical Center and Loyola Cardinal Bernardin Cancer Center in Illinois. Board Certified in Internal Medicine, Hematology and Medical Oncology, his clinical and research interests include multiple myeloma and blood and marrow transplantation. Dr. Hofmeister is an assistant professor of Internal Medicine at Ohio State University Medical Center.

Dr. Jan Moreb - Professor Bone Marrow Transplant Program, University of Florida, Department of Medicine. Dr Moreb is a physician scientist and is board certified in Internal Medicine and
Hematology. He is well published with a focus on multiple myeloma
and stem cell transplantation. He is a member of many medical
societies including the American Society of Hematology, the
American Association for Cancer Research, and the American
Society for Blood and Marrow Transplantation. His program at
the University of Florida was nicely presented in an article you can read if you just CLICK HERE. His training includes:
MD - Hebrew University Hadassah Medical School, Jerusalem, Israel
Internship - Hadassah University Hospital, Jerusalem, Israel
Hematology Residency - Hadassah University Hospital, Jerusalem, Israel
Resident and Chief Resident(Internal Medicine) - Shaare-Zedek University Hospital, Israel
Oncology Hematology Fellowship - University of Florida, College of Medicine, Gainesville, FL

Thank you Dr. Hofmeister and Dr. Moreb for your generous donations. Dr. Hofmeister's exact donation is even better for anyone who may be able to visit his facility in Columbus, Ohio. Dr. Hofmeister states: " Happy to review someone's records and talk with them by phone as a second opinion. If they come to Ohio State for a 2nd opinion, there insurance will be billed for the labs, the nurse's time, etc. That said if the patient has no resources, we see patients without insurance and have social workers that will handhold the patient through medicaid and all that "

Dr. Moreb's response to my request was " I will be happy to participate. Thank you for doing this." Dr. Moreb, we thank you for your selfless generosity!

However, if you are not chosen, you can still get a second opinion on line from Dr. Hofmeister for a very reasonable price if you go to the web site: https://2nd.md/disease/multiplemyeloma . Consults on this site are very reasonably priced and run from $100 to $250 for a 20 minute consult. A consult with Dr. Hofmeister could just SAVE LIFE! Maybe yours!

And as always, may God Bless your multiple myeloma jouney /Gary Petersen

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Working while Living with Multiple Myeloma - Cure Panel Broadcast March 20, at 6:00pm

3/11/2013

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***Now that the Panel Broadcast is over you can listen to it if you just CLICK HERE.***
You are working and have been diagnosed with multiple myeloma. You are generally younger(see graph below) and as such have a longer life expectancy and survival rate, and will be in the workforce for a long time. Thank God! If your disease allows you to work, what are your challenges? How are you viewed in the workplace? Can you be fired? What are your promotional opportunities?. Will anyone else hire you? Does your employer have adequate insurance? What if you use all you family leave for treatment, can you be terminated? There are a lot of questions that come up that are not typical for the average patient who is age 70, retired and on Medicare, with supplemental drug insurance, and hopefully Medicare Gap Insurance. You can find more information on the meeting by CLICKING HERE, or to just sign up you can CLICK HERE.

Matt Goldman is the co-host of the program with Priya Menon of Cure Talk and they will have two speakers.

Anya Prince, Staff Attorney, Cancer Legal Resource Center Anya Prince is a Staff Attorney with the Cancer Legal Resource Center. The Cancer Legal Resource Center (CLRC) is a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. The CLRC provides free information and resources on cancer-related issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.

Amy Garofalo - She started her own small Medical Transcription Company in 1996 and she also works for Middlesex Hospital as their Transcription Department Coordinator. Amy was diagnosed with Multiple Myeloma in April of 2011 – 7 months after starting her new job with Middlesex Hospital. She had a stem cell transplant, after many setbacks, on April 18, 2012. Her husband has set up a CaringBridge site for her at caringbridge.org/visit/amygarofalo where she writes about her journey with Multiple Myeloma.

For those patients who are are still in the work force, or struggling to continue in the work force, or feel trapped into working because you need the insurance, this is a great opportunity to hear from people in the same situation, and to ask your questions of the panel members on line during the broadcast.

Best Regards and as always may God Bless your myeloma journey./ editor@myelomasurvival.com

***SAVE LIFE!!! March is Multiple Myeloma Awareness month, and four links that will help in your awareness and to help others who have myeloma can be seen if you just click: Link1, Link2, Link3 and Link 4. Also I believe reading www.myelomasurvival.com will help as well.***

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Save Life!!! March is Multiple Myeloma Awareness Month

3/5/2013

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The IMF(International Myeloma Foundation) has designated March as "Multiple Myeloma Awareness Month", unfortunately it comes and goes and most people don't even know. If they do hear about it they think it is for skin cancer(Melanoma), not for the deadly blood cancer multiple myeloma.

The National Cancer Institute publishes that 24% of the patients die in the first year whereas those in the care of a multiple myeloma specialist will have a survival rate of 95% or better. This difference in the first year may be because of a lack of awareness, inadequate treatment, or misdiagnosis. I have written an article called "Why do People Die from Multiple Myeloma?? Lack of Awareness!!" and I am attaching it to this post as well. At the end of the article I ask that people send this to their Facebook, Twitter, and other social media friends to get the word out about Multiple Myeloma, because I believe everyone either knows someone with Multiple Myeloma, or one of your contacts will know someone, and they could use your help. Maybe just maybe together we can SAVE LIFE.

Why do people die from Multiple Myeloma? Lack of Awareness??????

When I ask the question it is more of a shout to the world -- because I feel that many people die sooner than they need to, and I just hate the thought of it! I am just beside myself in understanding why there is such a difference between what is and what could be. That is the reason I started this blog in the first place. 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 it is understandable, because I have seen patients who have been given just decadron as their only care when I know this is just such a substandard treatment. Then there is the patient who chose to only do holistic treatment. Or the patient who chose no treatment, because his faith will heal him. I, however, also have faith, but that faith is that my doctors will be guided by the hand of God. This was their choice, and I can understand it, but I certainly do not agree with the 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 a an impact. However, only 16.3% of the US population does not have health insurance and the differences 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 dare good move Mike! Or Barb Hammack(RIP) another 20-plus year survivor from the myeloma listserve(a patient to patient forum) who's 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, you got me? I can only speculate.

Part of it may just 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 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 and other social media, I therefore recommend that each of you send the following link to this page:http://www.myelomasurvival.com/1/post/2013/03/save-life-march-is-multiple-myeloma-awareness-month.html to all of your Facebook friends and Twitter followers, just to let them know that it is Multiple Myeloma Awareness Month and that a second opinion with a myeloma specialist could just "SAVE A LIFE". I will almost guarantee that one of the people you send this to will know a Myeloma patient who could benefit from this information. Because I have found that "Knowledge is power" and "Ignorance can kill!"

For more information on multiple myeloma care and treatment go to www.myelomasurvival.com

God bless all who have to be on this journey/ gary@myelomasurvival.com

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Multiple Myeloma Awareness Month and the world renowned Myeloma Specialists Dr. Hofmeister and Dr. Jan Moreb are providing a FREE second opionion

Working while Living with Multiple Myeloma - Cure Panel Broadcast March 20, at 6:00pm

Save Life!!! March is Multiple Myeloma Awareness Month

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