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Cancer Cases Among 9/11 Early Responders Continue to Grow

| 9 Comments
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new update from the World Trade Center Health Program (WTCHP) at Mount Sinai Hospital combined with data from the New York City Fire Department indicates that 2,518 first responders have now developed cancer. Myeloma is, unfortunately, among the top four cancers reported, along with prostate and thyroid cancer, and leukemia. This is more than a doubling of the number of cancer cases since last year at this time. If the numbers continue at this pace the burden of cancer, including myeloma, will become enormous--costly in terms of both lives and dollars.

Studies have shown that 9/11 workers have developed myeloma at a higher rate than expected in the normal population. Research has also shown a relationship between myeloma and exposure to carcinogens located at the World Trade Center site, as I've written about here. There is an important "proof of principle" regarding the development of myeloma among 9/11 first responders. The myeloma has been attributed (by the experts reviewing the exposures) to exposure to 1-3 Butadiene, an industrial chemical used to produce synthetic rubber (for example in automobile tires, but also in styrene compounds). The chemical is a known cancer-causing agent which, in the 9/11 setting, is now clearly linked to the causation of myeloma.

Cancer patients--including those with myeloma--can receive awards through the September 11th Victim Compensation Fund (VCF). Although patients are obviously grateful to have a VCF available to help cover lost earnings, plus $250,000 for each patient for "pain and suffering," there are many ongoing concerns and questions. For example, as of June 30, 2014, only 881 claims for cancer have been deemed eligible for compensation. The rest are still under review. A particularly perplexing point is why only 10% of the claim is paid out initially, with the rest of the payment deferred until 2016 (i.e. 2 years from now). This is a long time for patients whose lives are threatened by cancer. So far, the award amounts for 115 cancer claims paid have been between $400,000 and $4.1 million. This is a total of $50.5 million to date. It is not clear how many cancer patients have died.

There are some deadlines that 9/11-related cancer patients should note. Individuals who were diagnosed with a 9/11-related eligible cancer on or before October 12, 2012 and who have not already registered or filed a VCF claim must register with the Fund by October 12, 2014 for review this year. According to the VCF website, "Registration preserves your right to file a claim in the future (before the VCF ends on October 3, 2016). Registration is not the same as filing a claim and you are not required to file a claim even if you have registered." If an individual is diagnosed after the October 12 deadline, he or she can register any time up until the October 3, 2016 deadline.

Myeloma patients are strongly urged to submit claims absolutely as soon as possible. This tragic occurrence is both debilitating and complicated to deal with. The IMF is here to help. Let us know if you need help with paperwork and/or the details of managing the myeloma in the best fashion possible. Let the IMF know if you might need help in any way by contacting the InfoLine team, infoline@myeloma.org.

In addition, the IMF is keeping a spotlight on this important subject by hosting a briefing in Washington, DC, Wednesday, September 10 at 11:30 am. Speakers will focus on the link between agricultural and 9/11 toxic exposures, and myeloma. 

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

 

9 Comments

Thank you for identifying the causative carcinogen. I worked in lower Manhattan for one of the first companies to open after the attacks. We returned to work on Monday,
September 17. A fire smoldered at the WTC site until December or January. The smell in the Nassau subway station ( the stop before the WTC) was so unbearable, I changed commuting routes. The air was hazy and the sky was grayish. I remember that we were assured by the head of the EPA and the Mayor of NYC, that the air quality was ok. I was present in lower Manhattan, at least, 5 days a week for 8-10 hours a day until August 2008. My office was on the fifth floor of a building facing Broadway and, I had an entire wall of air conditioning vents facing Broadway. When I returned to work, I remember cleaning dust and dirt from my office furniture and window sills.

In 2012, I was diagnosed with Myeloma and, had a large plasmacytoma in my sternum and lesions. I have no family history of Myeloma. I have undergone induction therapy and had a stem cell transplant. I am in remission and see my oncologist every three months and visit my stem cell doctor at MD Anderson every 6 months. I have complications from the cancer and treatment. I have very troubling short term memory problems and cognitive impairment; chronic sternum pain; periodic upper back pain; eye problems, shoulder issues; osteoporosis; fatigue issues; joint pain; and, I wear hearing aids because I have unrelenting tinnitus from chemo medications.

I filed an application with the WTC Health Program. It has certified my Myeloma eligible and is a 3rd party insurance payor. I commend the WTC Health Program staffers as they have been of great assistance. After an evaluation, I was told that I am at risk for post traumatic stress syndrome. I also filed a complete claim with the VCF and, am awaiting a decision. I assure you there is no amount of compensation that will suffice. I am grateful to be
alive.


I strongly encourage other Myeloma patients who believe they are eligible to contact the World Trade Center Health Program and to register and file a claim with the 9/11 Victim Compensation Fund.

I was a responder at the Pentagon. It is my understanding that four individuals from my agency was diagnosed with the disease, to include me. In my team, three of us was diagnosed with cancer. I was diagnosed with multiple myeloma. Another individual was diagnosed with non-Hopkins lymphoma and another with a stomach cancer. My agency required annual physicals. From a review of the physicals, blood markers clearly indicated the advancement of my disease. Although I was receiving physicals, my disease was not discovered until 1/8/2008 and I was a Stage 3A (advanced stage of the disease). Fortunate for me, it appears my cancer is slow-growing and it has little or no impact on my kidneys and bones. Unfortunately for me, like all myelomiacs, the disease keeps rearing its ugly head, so treatment is a ongoing thing.

Hi
My name is Clara Russell I was not in
the New York 9/11 tragedy but was
recently diagnosed with Multiple
Myeloma in January 2013. It first
started with pain in my left shoulder
while working as a custodian and I'm
eager to know why, how and where
this disease came from. If you have
any info please let me know?
Thank you, Clara Russell


Is there also a connection to Diethylstilbestrol exposure in utero and multiple myeloma?

Please keep us informed on the date , place, speakers, and other information concerning the briefing in DC on toxic exposures. This is an extremely important topic.
Thanks for all the IMF does!
Mickey DeTemple

Hi Mickey, please see our briefing page here: http://cqrcengage.com/myeloma/sept10. It should give you the information you're looking for. If you have other questions please contact me at rwezik@myeloma.org.

Is there a way to watch/read this briefing on September 10 in Washington? Thanks

Hi Franklin,
Please see our briefing page here: http://cqrcengage.com/myeloma/sept10. It will give you information on the briefing, power points from our presenters and a video of our patient advocate. Contact me at rwezik@myeloma.org if you need help.

Getting our politicians or anyone else to promote the World Trade Centr Health Fund has been a mission of mine since January 2012. I have Multiple Myeloma and I worked in the area. I am certified under the World Trade Center Health Fund.

Finally, I got the attention of John Owens, Editor of Anton News to run a story about 911 and the World Trade Center Health Fund. You can read the article in The Port Washington News, The Weekend july 30-August 5 edition.

You discuss in your article about the first responders. What about the victims. Those of us that worked or lived in the area. Do you have numbers on us?

I will be leaving for vacation tomorrow and will return on August 25. I would be happy to contribute to getting the word out any way I can.

Scott Matty
e-mail- sbmatty@msn.com

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