Non Hodgkins Lynphoma from 911 survivor

gsxr497
gsxr497 Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello. My name is Tony and I am a cancer survivor. I worked at Ground Zero in that day and in the following months. When I was diagnosed in late 2006 it was a very tramatic and devasting news. Fortunatly thanks to my girlfriend who is now my wife notice that something was wrong with me and presured me to get check out. After CAT scans and biopsy is was confirmed that it was Non Hodgkin Lymphoma. Thanks to my wife I caught it early and it was still in stage one. After several bouts of devasting chemo I pulled through. In the months that I was sick I started to research on 911 responders and worker and there were several with the same illness I had. Same symptoms and diagnosis.
I would like to know if there is any help out there for people like me and others for this. I went at this on my own financially and emotionally with my wife since the higher ups do not recognize really that these illnesses are a direct result of that horrible day. Please let me know if you can out there and thanks you. God Bless America. TONY NYC

Comments

  • DennisR
    DennisR Member Posts: 148
    #2
    911
    Hi Tony,

    Sorry to hear about your Cancer, but happy to hear you caught it early and were able to get it into remission. I've been reading quite a few articles regarding this disease being diagnosed in responders and workers at ground zero and I believe they're beginning to recognize a cluster of this particular disease associated with first responders and ground zero.
    I would go online and start to research some of the Law Firms, Government Agencies, CDC etc and get more up to date info. Sometimes the Government and Courts are slow to admit their culpability, just look at how long Agent Orange was denied by the Government while so many brave soldiers were suffering. I know a large number of victims who are just experiencing terrible effects from the war. Same with the poor souls up here in Libby, Montana who are suffering from the Asbestos pollution and being denied treatment.
    Don't give and get as involved as you possibly can be.
    DennisR
  • sixtyx
    sixtyx Member Posts: 1
    #3
    911 survivor
    Tony,
    I am also a 911 responder and cancer survivor. I was diagnosed with Stage four NHL in May of 2007. I went through alot of the same stuff as you and ultimately a stem cell transplant and am currently in remisson. I would like to talk to you through private message or email. I'm sure we can give each other some info and advice.

    Hope to here from you soon
    Bruce
  • lucille23
    lucille23 Member Posts: 6
    #4
    Hello. My name is Lucille
    Hello. My name is Lucille and my 39 yr old son, who has never been sick, was just diagnosed with nodular lynphocyte predominant hodgkin lymphoma. This is a rare type of lymphoma and the treatment is not clear-cut. He may have to get another biopsy to narrow the diagnosis further. It is so rare that the doctors Sloan Kettering had never seen such a case. My son is a fire lieut. and was a 9/11 responder. He went down there several times to search for victims. His diagnose makes no sense. However, a nurse at Sloan remarked that since 9/11, they are seeing more cases of cancer, especially in young people. Many of the cases are unusual. I have been trying to find research or studies that addresses this problem. I know that Mt. Sinai is involved in such a study but have been unsuccessful in getting info. I will keep looking & will let you know if I find anything helpful. Take care & God bless you & your family.
  • LOVEOFMYLIFE
    LOVEOFMYLIFE Member Posts: 4
    #5
    Medical Monitoring for 9/11 Responders
    Tony
    Thank you for working at Ground Zero-it was such a selfless act on the part of all of you who worked there.

    There is help out there for you. Contact Logistics Health Incorporated. They have the contract to provide medical monitoring for 9/11 responders. They are in LaCrosse Wisconsin.
    Try this number 877-498-2911. I hope you are able to get the help you need and deserve
  • DT44
    DT44 Member Posts: 6
    #6
    lucille23 said:

    Hello. My name is Lucille
    Hello. My name is Lucille and my 39 yr old son, who has never been sick, was just diagnosed with nodular lynphocyte predominant hodgkin lymphoma. This is a rare type of lymphoma and the treatment is not clear-cut. He may have to get another biopsy to narrow the diagnosis further. It is so rare that the doctors Sloan Kettering had never seen such a case. My son is a fire lieut. and was a 9/11 responder. He went down there several times to search for victims. His diagnose makes no sense. However, a nurse at Sloan remarked that since 9/11, they are seeing more cases of cancer, especially in young people. Many of the cases are unusual. I have been trying to find research or studies that addresses this problem. I know that Mt. Sinai is involved in such a study but have been unsuccessful in getting info. I will keep looking & will let you know if I find anything helpful. Take care & God bless you & your family.

    NLPHL
    Lucille, My 24-year old son was just diagnosed with the same disease, but he was not at ground zero although I was. I am interested in knowing how your son was treated, which doctor he sees at Sloane and how he is doing. I wish him and your family good health.
  • lucille23
    lucille23 Member Posts: 6
    #7
    DT44 said:

    NLPHL
    Lucille, My 24-year old son was just diagnosed with the same disease, but he was not at ground zero although I was. I am interested in knowing how your son was treated, which doctor he sees at Sloane and how he is doing. I wish him and your family good health.

    He was treated with 12 wks
    He was treated with 12 wks of chemo (stanford 5), a wks rest, and 20 rounds of low level radiation for 4 wks. He finished 2 wks ago. The chemo was difficult, although he worked most of the time. The radiation made him very tired. His dr is Dr Matasar. He was our second opinion. My son's hair is coming back along with his coloring. Every day he seems to get stronger & he continues to work, play basketball & softball, & goes to the gym. I really think that this has helped him get through it all. He sees the radiologist at the beginning of June & then schedule a scan. That will be the true test. I hope & pray that the treatments did their job. How was your son diagnosed? Symptoms? Where is the NLPHL? My son has it in the groin area which is rare. Hope all goes well with you & your son. As a parent, you have to be strong. Let me know how everything goes.

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