Sunday, March 2, 2014

March is Multiple Myeloma Awareness Month

Below is a great post from Gary Peterson, a myeloma thriver, about multiple myeloma and the importance of Multiple Myeloma Awareness Month.


http://www.myelomasurvival.com/1/post/2014/02/when-myeloma-awareness-month-falls-every-march-does-anyone-hear-us.html

March is Multiple Myeloma Awareness month, but how does a disease which effects just 20,000 people in 315,000,000 or just .0063 percent of the people in the USA annually, get any attention or awareness? Breast cancer has 232,340 newly diagnosed annually or 11 times more cases but just 2 time more deaths.
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Everyone knows about breast cancer and should, but few if anyone other than those effected by myeloma have heard of multiple myeloma. It is therefore really important we work together, or we will not be heard.

We have some outstanding organizations that have helped to create awareness, raise funds, and spearhead drug development. Organizations like the IMF (International Myeloma Foundation), MMRF (Multiple Myeloma Research Foundation), and LLS (Leukemia & Lymphoma Society), and they do the best they can to get the word out, however somehow the average life expectancy remains at just 4 years for the third straight year in a row based on the statistics provided by the National Cancer Institute. In March of 2012, I wrote an article headlined "Why Do People Die From Multiple Myeloma? Lack of Awareness!!!", where I was trying to understand how multiple myeloma specialists had patient survival of 10 years of more but the average for all patients remains at just 4 years. To read the article CLICK HERE.

We also have a number of selfless, generous patient advocates, which include Mike Katz, Pat Killingsworth, Jennifer Ahlstrom, Lizzy Smith, Cynthia Chmielewski, Jack Aiello, Suzierose, Matt Goldman, Nick Van Dyk, Danny Parker, Cure Talk and Beacon contributors, et. al, who work tirelessly to get the word out and raise awareness, all while fighting this disease. We recently got the Tom Brokaw Bump (not a new dance) from his selfless and brave announcement of his condition. Google searches and views of my site doubled and tripled the week of Tom's announcement, but are now back to previous levels. It remains up to the selfless and knowledgeable myeloma advocates and myeloma organizations to continue their outreach efforts because each of these advocates know that a knowledgeable myeloma patient who has a MYELOMA SPECIALIST on their team will outlive the average life expectancy by a factor of 2 to 4, or 8 to 16 years vs. the current average of 4 years. And this 6 years of extra life for the 80,000 myeloma patients represent 480,000 years of life, and another 120,000 years of life with each new year of newly diagnosed.

I question some of the recent headlines in the news lately, but only because I think they need to add some fine print. Some of the headlines are:

Tom Brokaw's Multiple Myeloma Cancer and His Hopeful Future ...

Brokaw's multiple myeloma called incurable but treatable - USA Today

Tom Brokaw Diagnosed With Cancer, Prognosis Encouraging

Tom Brokaw reveals cancer diagnosis; doctors are 'optimistic' - CNN ...

These are all accurate, but only with some qualifiers. For reasons I have yet to understand completely, the prognosis for the average patient is for them to live an average of just 4 years with 20% dying in the first year, and this is not too hopeful, encouraging, and optimistic. The qualifying fine print should therefore read, the future is hopeful, encouraging, and optimistic if Tom has a skilled multiple myeloma specialist on his team, (he does). He goes to a facility that does genetic testing and is extensively involved in clinical trials (he is), is at a facility that tracts survival statistics and knows the results for every type of treatment in use at their facility (they do), is a low risk case which is 85% of cases based on genetic testing (I have no idea what his risk factors are). And, finally some of the most skilled myeloma specialists have stated they believe a minimum of 10% to 40% of their patients will be effectively cured using currently approved drug combinations and a protocol including induction, transplant, consolidation, and then maintenance, or in one case no transplants.

One way for YOU to help with Myeloma awareness is by getting this message out to your facebook, twitter or other social media contacts. You may not know someone with myeloma but your contacts might, and you may just help to SAVE LIFE! Just Click the Twitter and Facebook icons at the end of this post.

The Symptoms of Multiple Myeloma can include:
  • Bone pain and skeletal fractures, including compression fractures of the spine, which can cause severe pain, particularly in the back. A backache that lasts for months can be a signal that multiple myeloma is affecting bones in the spine and/or the ribs.
  • Frequent infections, especially bacterial infections of the respiratory and urinary tracts, which occur because the immune system is weakened.
  • Fatigue, weight loss, and general discomfort caused by anemia (insufficient red blood cells).
  • Nausea, vomiting, altered mental state, depression, and headache, caused by abnormally high calcium levels in the blood (hypercalcemia).
  • Loss of kidney function, leading to fatigue, buildup of fluid in the lower limbs, nausea, and vomiting.
  • Bruising, rashes, nosebleeds, vision loss, headache, dizziness, and peripheral neuropathy (numbness, tingling, and burning pain in the extremities) caused by blood that has thickened (a condition called hyperviscosity) due to high levels of protein.
  • Shooting pains in the arms and legs caused by a tumor in the spinal column pressing on nerves.

In about one-third of patients, multiple myeloma is detected before symptoms appear through routine blood tests that show elevated levels of immunoglobulin proteins.

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:

  1. Matt, thanks for your efforts to bring multiple myeloma out of the shadows and into the light. Gary

    ReplyDelete