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A Sad Day for the Myeloma Patient Community!  Mike Katz one of the few truely OUTSTANDING myeloma advocates has died after a 24+ year battle with #MM.  

4/27/2015

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Michael Katz, second from the left was a non stop advocate for the myeloma patient community, and a shinning example of how to beat this disease.  When he was diagnosed 24+ years ago the life expectancy was between 2 and 3 years,  and he learned all he could about the disease or became his own best advocate.  He found  and was treated by the best myeloma specialists in  the world.  I wrote a blog post about how remarkably astute he was to be active at the top level of the IMF(International Myeloma Foundation), because of course he did great things for the myeloma patient community, but he also knew of the latest treatments and had contact with the top multiple myeloma specialists.  Unfortunately,  I received a tweet today from Dr. Rajkumar, who acknowledged all the great things that Mike accomplished in his life and that he will be remembered for them.  I then  came across the following memorial.

In memoriam — Michael Katz, MBA Posted on April 27, 2015 by Sitemaster  of  The  Prostate Cancer Infolink  

This has just a very little to do with prostate cancer but everything to do with cancer patient advocacy.

My friend Michael S. Katz, MBA, passed away on Sunday in New York from complications associated with multiple myeloma (although along the way he had also been diagnosed and treated for colon cancer). He was initially diagnosed with myeloma back in 1990, when life expectancy for myeloma patients was something like 3 to 5 years, and yet he lived for another 22 years with this disorder.

Along the way, Michael did a lot of very important things:

  • He became a Board member and vice president of the International Myeloma Foundation.
  • He spoke regularly to myeloma patients and their family members at seminars all over North America.
  • He helped to change the first-line treatment of myeloma by insisting that the Eastern Cooperative Oncology Group (ECOG) champion the use of low-dose prednisone as opposed to dexamethasone in a major clinical trial — leading to a major reduction in the side effects historically associated with the use of dexamethasone.
  • He was an author on the original paper reporting the association of treatment with zoledronic acid (Zometa) to the condition known as osteonecrosis of the jaw (ONJ) — which is seen in some prostate cancer patients.
  • He became the first-ever chairman of the Consumer Liaison Committee to the Director of the National Cancer Institute.
  • He helped to build and maintain the web site of the International Myeloma Foundation.
  • Every year, he video-interviewed dozens of physicians and scientists about their research into myeloma and its management at the annual meetings of the American Society of Hematology (ASH) and the American Society of Clinical Oncology (ASCO).
  • He initiated and ran face to face and on-line myeloma patient support groups.
  • And for much of the time, while doing this, he was holding down a job as a vice-president at a major New York consulting firm.

Last year — deservedly — Michael was recognized by ASCO, at its annual meeting in Chicago, with the ASCO Partners in Progress Award, for his considerable contributions to cancer and to myeloma in particular. And if you want to know more about him, you can read what was said about him in The ASCO Post at the time.

Above all, Michael did all of these things without fuss and without ever seeking any reward or recognition for all the work he did. He has been an inspiration over the years to many in the cancer advocacy community, and just because you haven’t heard of him doesn’t mean that you may not have benefited from the example he set for others.

Rest in peace Michael … If anyone deserves that rest, it is you … and you will not be forgotten.

Yes Mike, you will be sourly missed.  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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MyelomaSurvival.com Predicts the National Cancer Institute Will Show Myeloma Survival Has Improved by 25%!  But Carnac sees a 50% Improvement!

4/21/2015

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Every  April 15 is not only tax day, but it is the date when the National Cancer Institute publishes the new year's data for survival for multiple myeloma.  One of the short falls to this publication is that they publish in April of 2015, and the earliest information is for 2011.  They should be able to provide one year survival for 2013, but they do not and I have no idea why they are at least 3 years behind.  The newest data was published on 4/15, however the relative survival statistics has yet to be updated, so as yet we have no new survival update for 2011.  So like Johnny Carson as Carnac The Magnificent, 
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I will predict this year's number and that of next year as well.  First lets look at the history of the survival for myeloma in the USA. 

year             survival milestones        years between milestones

1975                     2 years                               -

1998                     3 years                             23

2004                     4 years                               6

                                                      2008 (Carnac        5 years                               4

                                                                                        prediction)

For the last 4 years the average life expectancy has not changed, however if you look at newly diagnosed from 1975 to 2004 it has improved by 100% from 2 years to 4 years.  And although the National Cancer Institute has not
published the survival statistics as yet for 2007, I am confident it will again be 4 years, however Carnac predicts it will reach 5 years of survival for the 2008 newly diagnosed patients which will be published in April of 2016 by the NCI.  You can see the most recent data on survival published by the National Cancer Institute if you CLICK HERE.  You will note the earliest year with data is 2010. 

I think the most important finding in the SEER data is that the time between milestones has gone from 13 years to just 4 years, and if this trend continues at the current rate, patients should see the next milestone of 6 year survival no later than when the 2012 newly diagnosed patients reach their 6th year.  What I am most excited about is that the numbers are starting to reflect the current advancements and the acceleration of these advancements.   Carnac The Magnificent will go so far as to predict the average life expectancy for those patients newly diagnosed in 2015 will have an average life expectancy of 7 years.  And has been the case, those who find one of the many exceptional multiple myeloma specialists will average as many as 14 years, which happens to be just two years shy of the predicted life expectancy of a 69 year old without myeloma, and 69 is the average age of a myeloma patient.

Update as of 4/23/2015 -  The NCI has published the new year data (CLICK HERE)  and Carnac was correct the survival remained at 4 years.  However it did show the 4 year survival at 54.8%, so it looks like there is a high probability that next year will show a 5 year survival.  Because average survival of 50% is something greater than 4 years and less than 5 years you can make the argument that it is now just shy of 4.5 years or a 12.5% improvement year over year.


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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This Weeks Myeloma Highs and Lows

4/6/2015

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Hot Update Bart Barlogie will not retire but will be leaving to start a new practice elsewhere.  WOW! See below

The High

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Bart Barlogie will be retiring as of the August 31, and be able to buy a new Harley and leathers and spend a well deserved victory lap into the sunset.  I received a letter from Dr. Morgan announcing the retirement and what a wonderful and happy sendoff was in the making for a friendly and harmonious separation.  Dr. Barlogie is by far the the most influential, inventive, driven, and patient centric myeloma specialist in the world, and I can not estimate how many extra years of life he has provided for so many.   Dr. Barlogie is my doctor so I am so heartbroken to see him go and wish he and his family a wonderful future.  Thank You Bart for saving my life and so very many more. 

The Low

A recent blog post has cast some doubt as to just how harmonious the split actually is.  Pat's blog post outlining this can be seen if you CLICK HERE.  It states that a number of patients have contacted Pat and said that the Kumbaya spin on this separation is a lot more than currently meets the eye.  I think we will be learning more about this in the near future, and I hope it does not become another "Needs to Spend more time with his family", or "Chose to pursue other interests" situations.  That would just be so sad for Bart and for UAMS.

Hot update - A recent blog post by Nick Van Dyk a friend and patient of Dr. Barlogie confirms,  "
Bart is "not retiring" but will be setting up shop elsewhere."
You can read Nick's logical evaluation of the reasons for the split and the obvious considerations each of the patients who have committed their treatment to the Total Therapy regimen will now have to reevaluate for their ongoing care if you CLICK HERE.

The High

You can help yourself survive myeloma!  The MCRI (Myeloma Crowd Research Initiative) will air another of the 10 finalists for 
consideration for funding of the best possible clinical trial for high risk myeloma.   Most all myeloma becomes high risk and as a result a cure for high risk disease will mean a cure for all myeloma. 
You can help to pick and fund the most promising clinical trials in the world for myeloma.  MCRI High-Risk Myeloma Series: Dr. Guenther Koehne, MD, PhD, MSKCC, a T cell approach showing success even in plasma cell leukemia and now for use in myeloma. Tuesday, April 7 @ 1 pm EST  Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Compute



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Myeloma Patients, Caregivers, and Friends have all provided songs of hope and love to Cancer Patients.  If you have not heard it, when you do it will make your eyes leak. The Songs For Life 2015 album is a crowdsourced music project that was created with love by artists and singer-songwriters that have donated their time and music to help find a cure for cancer. The artists on the album were selected by the community and judges based on dozens of great entries. More than half of the artists on the album are cancer survivors themselves and understand how challenging the road can be for patients.  To hear some of the songs or purchase the recordings CLICK HERE.

All of the proceeds of this album go to cross-cancer research initiatives sponsored by the CrowdCare Foundation. If you are asking what you can do to help move research forward at a faster pace, this is a perfect answer. The Songs For Life album is also an inspiring and ideal gift for friends or family members who are struggling in their fight against cancer.

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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    Author

    Gary R. Petersen
    [email protected]
    CLICK HERE for my myeloma journey

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