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Paperwork Required to Receive 9/11 Myeloma Coverage

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The personal stories of toxic exposures potentially linked to myeloma just keep on coming! I am grateful to all who shared them with me. And once again, the 9/11 compensation fund was in the news on January 30th.  The first 15 compensation awards were given out--but none to cancer patients. Sheila Birnbaum, the special master of the $2.8-billion fund, said she had not awarded money for cancer yet because she had not received completed applications. Of the 16,000 people who have registered, only 2,500 have submitted eligibility forms, and, of those, only 190 have submitted compensation forms and many lack documentation!

So, the dreadful task of completing all the paperwork seems to be the key to potential compensation, and staff advice is apparently available. Myeloma patients need to work through these details in as timely a manner as possible to take advantage of available compensation, as the fund expires in 2016! Current estimates are that over of $8.5 billion will be required to compensate the thousands of people potentially eligible--$6 billion more than the amount approved by Congress in 2010. Being at the front of the queue could prove to be quite important!

Many people have responded to my previous blogs on this topic, including Hardy Jones. Hardy documented the toxic pollution in his system by having his tissue levels tested and had extremely high mercury levels reduced with chelation therapy. His unwavering work to assess and document environmental pollution (he was featured in an NPR story in 2009) is applauded by all and can hopefully lead to meaningful protections and regulatory changes.  

Comments posted by many people here support the correlation between toxic exposures and the subsequent diagnosis of myeloma. Unfortunately, these have to be evaluated on a case by case basis. There are two key points to keep in mind.  First, anyone concerned about toxic exposure should limit potentially harmful exposure. Second, fortunately, the outcomes for myeloma patients have been improving dramatically with use of novel therapies available in the last 5-10 years, with new drugs being approved in rapid succession. Early diagnosis and getting started on therapy are very important. I urge people who were exposed to toxic chemicals during 9/11 be screened for MGUS or smoldering myeloma, which are precursors to active myeloma. I strongly recommended this course of action since early diagnosis will undoubtedly lead to the best results.

9 Comments

Dear Dr.Durie
I am a survivor, Victim and rescuer from the attacks on 9/11 I recently Had my WTC medical (Jan of 2013) When my Blood & huron test can back with a Low level of 5 on my anion Gap. I am a Retired Lieutenant from the FDNY who survived the 1st & second collapse of the WTC I spent more then 4 months at the site afterwards after reading the statement below my question to you is should I be concerned? The Mt.Sanai WTC treatment programy just sent me resluts no other information ( my mother was diaignosed with burning mylenoma whenat age 80) Pleae if you have the time respond to me at the above email
Thank you
Larry Monachelli


WHAT DOES IT MEAN IF THE ANION GAP LEVEL IS TOO LOW?

If the anion gap level is too low, this can mean that the person has hyponatremia (a decreased level of sodium in the blood). It can also mean that the person has multiple myeloma, which is cancer of the bone marrow. Bone marrow is a tissue that fills the center of long bones. Additional testing needs to be done to find out the reason for the anion gap level being too low

Dr. Sundar Jagannath is an excellent MM doctor at Mount Sinai.
But before contacting him, keep calling the program you referred to until you get a doctor who can explain all the results to you. And have them send everything to you. I would suggest that if you are not satisfied, call Dr. Jagannath....he is a brilliant man.

What particular toxic chemicals do you think these New York Fireman were exposed to that would cause MM?

I was diagnosed with MM at 56 years old. I have no family history of Myeloma.
I worked in the WTC affected area. The WTC fire smouldered around
Lower Manhattan until January 2002. We were repeatedly
told that the air quality was safe, but it was not.
Excessive quantities of benzene, petroleum toxins as well as other toxins were found in Lower Manhattan.

I have begun the process of filing out the eligibility and compensation forms and
gathering documents. It is important to keep all evidence of medical care, including receipts. Yes, indeed it is a laborious process.

Have you found a corelation between Black Mold and MM? An are of my home had mold...not in Lower Manhattan. I cannot find any other exposure to chemicals/agriculture. I am a 58 year old female.

I was diagnosed with multiple myeloma at age 56; there is no history of multiple myeloma in my family. I was, and still am, working in the WTC area on 9/11. The air quality was appalling, including inside our building in the weeks following the attack.

I have yet to complete the eligibility and compensation forms. Any advice on this will be welcome.

Diagnosed with MM feb 2013 and currently completing induction chemo before ASCT. I have worked in the environmental investigation/remediation field working at superfund and state toxic chemical sites for over 25 years. With exposure to solvents, pesticides, heavy metals etc. I believe after reading the study of 9/11 responders and the comments received there is a link between this cancer and toxic chemical exposure. I applaud the work being done to study this further which can bring changes for those working in related fields to test for MM as part of routine medical monitoring. Thank you for bringing this research to my attention.

Pat thomson

Test 475

Thanks for all your useful info. I am 63, asymptomatic, and for one year I have a high M protein and am being tested monthly or quarterly for blood cancers, specifically Waldenstrom's macroglobulemia.

The past several months I have been drinking a green drink in the AM.. I grow the kale and swisschard and mint, add lemon, orange juice, blueberries, 1 T aloe vera from the plant, then place in the "magic bullet" and hope it cleanses my blood. They say there is nothing I can do to avoid these incurable cancers, however, I will keep trying, althouth the M seems to be rising.

I also continue acupuncture once weekly but have stopped drinking their chinese hrebal tea twice a day. The oncologist said I may be allergic to that.

Any suggestions will be appreciated. Aloha, Sue

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