Cancer possibly caused from 911...I need information

texxlisa
texxlisa Member Posts: 6
edited March 2014 in Head and Neck Cancer #1
Hi,

My 38 yr old boyfriend was just diagnosed with stage 4a cancer...we are still unsure of the type of cancer, but it was discovered in his lymph nodes in his neck, they believe it's neck cancer right now, his results of the PET scan will be in this week. He was a first responder to 911 and was stationed for a year in NYC after the impact. I was told there is funding for first responders that in result, have goitten sick from being down there. The docters believe his cancer is a direct result of 911. If anyone has any information on this, please let me know...I just don't know where to start and the shock of this all is just starting to set in. I've never dealt with someone close to me getting cancer.
Thank you.

Comments

  • newbride
    newbride Member Posts: 142
    #2
    Where are you located?
    Are you near or can get to Mt Sinai Hospital? I know they have a program for 911 responders. Try calling them and ask what you need to do.
  • pattyanny
    pattyanny Member Posts: 544
    #3
    Neck & lymph nodes
    Hi, I was just diagnosed with cancer in bilateral lymph nodes of the neck. I had my PET scan with Dr. Marita Teng on7/23/09. The PET scan was painless,quick,and amazing. If you can possible get there, you will not be disappointed. I am now having radiation near my home, but the staff at Mt Sinai are all amazing. Do mention 911 responder if you call (although you may need your ENT Dr to send all records.) Also keep copies of everything.
    I was, and am still very scared, since this was my first day of radiation, but you are in a great forum for support and answers. Take one day at a time and try not to "write the script". God bless you both, and stay strong. It is an emotional roller coaster for all involved. Please thank him for his courage and his service on that horrific day. Patty
  • texxlisa
    texxlisa Member Posts: 6
    #4
    newbride said:

    Where are you located?
    Are you near or can get to Mt Sinai Hospital? I know they have a program for 911 responders. Try calling them and ask what you need to do.

    911 First responder
    Hi, We are in Albany N.Y., I'm not sure where Mt. Sinai Hospital is, forgive me...he is being covered by the VA here....I was looking into any government funded programs for the loss of income he will endure. I was told there was some sort of program funded by the government for first responders who got sick from their service from 911??
  • newbride
    newbride Member Posts: 142
    #5
    pattyanny said:

    Neck & lymph nodes
    Hi, I was just diagnosed with cancer in bilateral lymph nodes of the neck. I had my PET scan with Dr. Marita Teng on7/23/09. The PET scan was painless,quick,and amazing. If you can possible get there, you will not be disappointed. I am now having radiation near my home, but the staff at Mt Sinai are all amazing. Do mention 911 responder if you call (although you may need your ENT Dr to send all records.) Also keep copies of everything.
    I was, and am still very scared, since this was my first day of radiation, but you are in a great forum for support and answers. Take one day at a time and try not to "write the script". God bless you both, and stay strong. It is an emotional roller coaster for all involved. Please thank him for his courage and his service on that horrific day. Patty

    Patty
    Where are you located that you are not being treated at Mt Sinai?
  • newbride
    newbride Member Posts: 142
    #6
    texxlisa said:

    911 First responder
    Hi, We are in Albany N.Y., I'm not sure where Mt. Sinai Hospital is, forgive me...he is being covered by the VA here....I was looking into any government funded programs for the loss of income he will endure. I was told there was some sort of program funded by the government for first responders who got sick from their service from 911??

    Mt Sinai
    Is in NYC -- located between Madison and Fifth Ave at 99th st
  • texxlisa
    texxlisa Member Posts: 6
    #7
    newbride said:

    Patty
    Where are you located that you are not being treated at Mt Sinai?

    We are in Albany, NY and his
    We are in Albany, NY and his cancer, this point is inconclusive...they are continuing testing. Both lymph nodes in his neck show cancer, had a panel of docters studying his case at the local VA. I told him of Mt Sinai. I think we will look into it. Thank you for all your help.
  • texxlisa
    texxlisa Member Posts: 6
    #8
    pattyanny said:

    Neck & lymph nodes
    Hi, I was just diagnosed with cancer in bilateral lymph nodes of the neck. I had my PET scan with Dr. Marita Teng on7/23/09. The PET scan was painless,quick,and amazing. If you can possible get there, you will not be disappointed. I am now having radiation near my home, but the staff at Mt Sinai are all amazing. Do mention 911 responder if you call (although you may need your ENT Dr to send all records.) Also keep copies of everything.
    I was, and am still very scared, since this was my first day of radiation, but you are in a great forum for support and answers. Take one day at a time and try not to "write the script". God bless you both, and stay strong. It is an emotional roller coaster for all involved. Please thank him for his courage and his service on that horrific day. Patty

    Thank you Patty, that's my
    Thank you Patty, that's my Mom's name BTW :) He is taking this all very hard, as he should. I'm trying to be there and console as much as he wants. Thank you for your support, I'll thank him as many have forgotten what those men and women did for us on 911. Please let me know any further info you may know about the program at Mt. Sinai for first responders. Thank you and I wish you luck with your fight against this horrible disease.
  • pattyanny
    pattyanny Member Posts: 544
    #9
    911
    I spoke to American cancer society and they said they may have info for 911 responder thru the VA. Go to website acs.org for phone contact. You are in my prayers, Patty
  • pattyanny
    pattyanny Member Posts: 544
    #10
    newbride said:

    Patty
    Where are you located that you are not being treated at Mt Sinai?

    Mt Sinai
    I am in Staten Island, and would have to either travel each day or stay M-Fri. I hsve 2 teens starting school next week, so I am being treated on S.I. Sometimes have to be radiation at 7:30 am, and chem takes 3 or 4 hours. Unfortunately, it could not be done since the minimum is 8wks of treatment. Hope you are doing well. And if I may ask - where are you located, and are you in treatment newbride? Thanks for asking.
  • newbride
    newbride Member Posts: 142
    #11
    pattyanny said:

    Mt Sinai
    I am in Staten Island, and would have to either travel each day or stay M-Fri. I hsve 2 teens starting school next week, so I am being treated on S.I. Sometimes have to be radiation at 7:30 am, and chem takes 3 or 4 hours. Unfortunately, it could not be done since the minimum is 8wks of treatment. Hope you are doing well. And if I may ask - where are you located, and are you in treatment newbride? Thanks for asking.

    Pattyanny
    Sorry I didn't get back to you sooner. It's been crazy here. I'm not in treatment but my husband is. We are in NJ so I can relate to your travel issue. Are you working in conjunction with the doctors at Mt Sinai or did you change doctors altogether? Mt Sinai had been wonderful with us as far as treatment for my husband is concerned. Our issue is that obviously I still have to work full time. Originally when my husband was going to have treatment on a daily basis he was going to stay in NYC at Hope Lodge (a free housing facility underwritten by the American Cancer Society). However, when they decided he needed more aggressive treatment, we decided that he would go in the hospital for 5 days (actually 6 if you count admitting him on Sunday) - he gets 2 radiation treatments per day while in the hospital and is hooked to an IV 24 hrs (not sure how much is chemo). He then comes home for 9 days - but I have to take him back in on Tuesdays for a chemo infusion. There was one week in the very beginning where he needed to go in on his off week for 1 radiation session per day (extra from his original plan) and they were great about scheduling the treatment at 8:00 a.m. so I could get him there, get him home and still be at work by 10:00.

    Good Luck with your treatment. I don't recall reading any previous posts from you - what type of cancer were you diagnosed with? We have a challenge as my husband was diagnosed with a very rare salivary gland cancer - rare in the fact that it is in his nasal and sinus cavity and not the mouth area. He is only the 3rd reported case like this so it's very difficult for us not knowing what the prognosis is - although some of the doctors sound very optimistic while others take more of the cautious road with "let's wait until the treatments are completed".
  • pattyanny
    pattyanny Member Posts: 544
    #12
    newbride said:

    Pattyanny
    Sorry I didn't get back to you sooner. It's been crazy here. I'm not in treatment but my husband is. We are in NJ so I can relate to your travel issue. Are you working in conjunction with the doctors at Mt Sinai or did you change doctors altogether? Mt Sinai had been wonderful with us as far as treatment for my husband is concerned. Our issue is that obviously I still have to work full time. Originally when my husband was going to have treatment on a daily basis he was going to stay in NYC at Hope Lodge (a free housing facility underwritten by the American Cancer Society). However, when they decided he needed more aggressive treatment, we decided that he would go in the hospital for 5 days (actually 6 if you count admitting him on Sunday) - he gets 2 radiation treatments per day while in the hospital and is hooked to an IV 24 hrs (not sure how much is chemo). He then comes home for 9 days - but I have to take him back in on Tuesdays for a chemo infusion. There was one week in the very beginning where he needed to go in on his off week for 1 radiation session per day (extra from his original plan) and they were great about scheduling the treatment at 8:00 a.m. so I could get him there, get him home and still be at work by 10:00.

    Good Luck with your treatment. I don't recall reading any previous posts from you - what type of cancer were you diagnosed with? We have a challenge as my husband was diagnosed with a very rare salivary gland cancer - rare in the fact that it is in his nasal and sinus cavity and not the mouth area. He is only the 3rd reported case like this so it's very difficult for us not knowing what the prognosis is - although some of the doctors sound very optimistic while others take more of the cautious road with "let's wait until the treatments are completed".

    Neck cancer
    I am working with the Mt Sinai Dr. but just got my chemo port on Friday. I start chemo on Wednesday, which truthfully am very scared. I have had 5 rad tx last week which was "interesting" with that mask and being bolted to the table.
    I am so sorry to hear about your husbands rare diagnosis, but he is in the best place possible and very lucky to have a strong supportive wife beside him. You are truly amazing and to also work full time besides! God Bless you both!
    I do not know my prognosis as yet, just praying I can keep my weight up during chemo, otherwise I will need a peg tube to be fed. I am trying to take one day at a time and not go into "panic mode" I am trying to keep this news from my 80 yr old Mom, who recently had a stroke which affected her memory and cognitive thinking. I check on her 2 or three times a day, and call to make sure she is not out driving! Believe it or not, it keeps my mind off my own problems! :)
    My prayers are with you and I know Mt Sinai is the place to be. Please keep me updated and Good luck!
  • newbride
    newbride Member Posts: 142
    #13
    pattyanny said:

    Neck cancer
    I am working with the Mt Sinai Dr. but just got my chemo port on Friday. I start chemo on Wednesday, which truthfully am very scared. I have had 5 rad tx last week which was "interesting" with that mask and being bolted to the table.
    I am so sorry to hear about your husbands rare diagnosis, but he is in the best place possible and very lucky to have a strong supportive wife beside him. You are truly amazing and to also work full time besides! God Bless you both!
    I do not know my prognosis as yet, just praying I can keep my weight up during chemo, otherwise I will need a peg tube to be fed. I am trying to take one day at a time and not go into "panic mode" I am trying to keep this news from my 80 yr old Mom, who recently had a stroke which affected her memory and cognitive thinking. I check on her 2 or three times a day, and call to make sure she is not out driving! Believe it or not, it keeps my mind off my own problems! :)
    My prayers are with you and I know Mt Sinai is the place to be. Please keep me updated and Good luck!

    Pattyanny
    I think you made a good choice with the chemo port. I wish my husband had done it at the beginning. It hurts me (probably me than him) each time they put an IV in him, but at this point with only this week and the week after next left for Chemo it's not worth doing it now. He did have the peg tube put in about 3 weeks ago as he got to the point where he was having trouble eating because of the radiation and the only thing he was able to drink was water which doesn't have enough calories to maintain weight. Because of his 2 prior surgeries they were afraid to put him out again so he was in quite a bit of pain when they did the tube since they basically gave him something only a bit stronger than valium. He gained 5 pounds since having the peg. Thanks for the support and I'll keep you in the loop.

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