In Desperate need for advice

LindsayBrown
LindsayBrown Member Posts: 22
edited March 2014 in Esophageal Cancer #1
Looking for some advice for my father. He was diagnosed Nov. 11th 2009 with stage IV EC. Had chemo. 5fu and cistplatin and 28 days of radiation followed by the ivor lewis esophagectomy. Then they found a brain tumor (also adendinocarcinoma) which they thought they might have missed in the beginning. So they weren't so quick to call it a metastisis. Just had a 3 month PET and they found a spot on the liver. They haven't done a biopsy because they are saying that the liver bleeds alot and that they assume it's a metastisis and that it's most likely in his blood and they are going to do another scan in a month and see if there are any more spots. They said that they think he's too weak for chemo. right now and that it would kill him. I feel as though they have given up on him. My dad still wants to fight. How would I find a clinical trial or something, anything. I spend all my free time searching for help for him. I have called the Cancer centers of america and they don't accept HMO insurance. I even called the Burzinsky clinic in Texas. Thats alternative medicine. But it costs so much money and they don't accept HMO's either. He is currently being treated at Mass. General in Boston. We live right outside Boston. Any help would be greatly appreciated. My dad is only 60 and has a 6 year old. Please help me.

Lindsay

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • lindadanis
    lindadanis Member Posts: 235
    #3
    unknown said:

    This comment has been removed by the Moderator

    your dad's situation
    Hi, I think we may have spoken before, I live in Weymouth, Ma. my husband has stage four esphogeal that was diagnosed last October, had spread to his liver, stomach, pelvis, etc.
    He did eight months of the same chemo and they just found out a few weeks ago that he also has a brain met, he is currently doing 15 sessions of radiation. We never had a brain scan so do not know how long brain met has been there. Are they offering your dad radiation to the brain, we are doing whole brain radiation. Please let me know ok.
    Linda
  • LindsayBrown
    LindsayBrown Member Posts: 22
    #4
    lindadanis said:

    your dad's situation
    Hi, I think we may have spoken before, I live in Weymouth, Ma. my husband has stage four esphogeal that was diagnosed last October, had spread to his liver, stomach, pelvis, etc.
    He did eight months of the same chemo and they just found out a few weeks ago that he also has a brain met, he is currently doing 15 sessions of radiation. We never had a brain scan so do not know how long brain met has been there. Are they offering your dad radiation to the brain, we are doing whole brain radiation. Please let me know ok.
    Linda

    brain radiation
    yes Linda he had whole brain radiation after they did surgery to remove the tumor from his cerebellum. He is getting around and eating well. I will look into therasphere. Thanks so much.
  • LindsayBrown
    LindsayBrown Member Posts: 22
    #5
    LindsayBrown said:

    brain radiation
    yes Linda he had whole brain radiation after they did surgery to remove the tumor from his cerebellum. He is getting around and eating well. I will look into therasphere. Thanks so much.

    what hospital
    I forgot to ask you where is your husband being treated? Is he also at Mass. General?
  • lindadanis
    lindadanis Member Posts: 235
    #6
    LindsayBrown said:

    what hospital
    I forgot to ask you where is your husband being treated? Is he also at Mass. General?

    my husband
    he is being treated at Dana in South Weymouth, they just opened this new facility last september. How many radiation treatments did your dad have? any complications at all?
    Did they leave him on a small dose of decadron for brain swelling? No, my husband did not have surgery, just radiation. We also deal with an oncologist at Comm. Oncology here in Weymouth, a dr. o'connor, we love him He did eight rounds of chemo before they found out he had a brain met, thinking of restarting the chemo again soon. Is your dad doing chemo as well?
    Linda
  • LindsayBrown
    LindsayBrown Member Posts: 22
    #7
    lindadanis said:

    my husband
    he is being treated at Dana in South Weymouth, they just opened this new facility last september. How many radiation treatments did your dad have? any complications at all?
    Did they leave him on a small dose of decadron for brain swelling? No, my husband did not have surgery, just radiation. We also deal with an oncologist at Comm. Oncology here in Weymouth, a dr. o'connor, we love him He did eight rounds of chemo before they found out he had a brain met, thinking of restarting the chemo again soon. Is your dad doing chemo as well?
    Linda

    Not sure if he's strong
    Not sure if he's strong enough for chemotherapy now. The brain radiation took a toll on him. He had 14 days of it and lost hair, weight,appetite. Had severe nausea it was awful but he is feeling better now just still low weight he is 6' 4" 150lbs. So that's why chemotherapy is risky I guess'

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