New: A plea for response

Clearblue
Clearblue Member Posts: 186
edited March 2014 in Esophageal Cancer #1
Hello everyone.

My wife has Fanconi Anaemia, a condition which gives rise to cancerous tumors. Since 1996, she has had base of tonge-scc- , aesophogectomy & gastric pull-up (2008), larengpharingial scc, lung scc. There are differences of opinion weather lung was secondry or not.

So she has amazingly fought her way out of hospital each time. She' gone through the eating, swallowing, peg, dilations, etc etc difficulties like alot of you here.

Fanconi Aneamic people have hypersensitivity to chemo which can be lethal and radiation has been ruled out too. Owing to the above and given her latest pharynx and lung lesions,"we" are on Erbitux only.

FOR NOW, Id like to know if anyone on this site knows of anyone who has Fanconi Aneamia. There are few survivng adults around, yet alone any info regarding case treatments . I cant tell you how wretched this is.

I dont know where to start really, but i thought that if the lung lesion was from the original aesoph cancer, maybe i should be on this discussion board. We are so tired.

If anyone has any response to any of the above, id be greatful. Th truth is i dont really want to hear anything bad.

Clear Blue.

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
    #2
    This is a good place to be
    Clear Blue,

    It sounds like you and your wife have overcome some major challenges in the past.

    I am not sure if the current tumors you are dealing with are secondary to the primary esophageal tumor; but I am sure that one thing all cancer survivors need irrespective of what kind of cancer they are fighting; is the support of people who understand their suffering and have a positive attitude.

    You will find the people in this group to be positive and supportive and a great place to find suggestions and understanding. Sometimes we are looking for new treatment options and sometimes we just need to vent. But if you are looking for a place to find support this is the right place.

    Welcome!!!!

    Best Regards,
    Paul Adams
    AKA "paul61"
    McCormick, South Carolina
  • unclaw2002
    unclaw2002 Member Posts: 599
    #3
    Clear Blue,
    I have never
    Clear Blue,

    I have never heard of your wife's condition --- but it sounds similar to that of a collegue of mine in Texas who went to DC for treatment. I will try and see if they are similar.

    On the side of good news - you are fortunate you are on Erbitux as it has been touted as one of the wonder drugs of this century in its ability to attack tumors and increase the survival rate of cancer patients. It has been approved for the treatment of neck, lung and colon cancer I think and esophageal cancer is in its third clinical trial (not yet ready for treatment use in the general population) --- the results are remarkable boosting survival rates from under 30% to over 60%. Those are remarkable results and very encouraging results. Good luck to you and your wife. You sound like a team who are fighting every step of the way.

    Good luck,
    Cindy
  • Clearblue
    Clearblue Member Posts: 186
    #4
    unclaw2002 said:

    Clear Blue,
    I have never
    Clear Blue,

    I have never heard of your wife's condition --- but it sounds similar to that of a collegue of mine in Texas who went to DC for treatment. I will try and see if they are similar.

    On the side of good news - you are fortunate you are on Erbitux as it has been touted as one of the wonder drugs of this century in its ability to attack tumors and increase the survival rate of cancer patients. It has been approved for the treatment of neck, lung and colon cancer I think and esophageal cancer is in its third clinical trial (not yet ready for treatment use in the general population) --- the results are remarkable boosting survival rates from under 30% to over 60%. Those are remarkable results and very encouraging results. Good luck to you and your wife. You sound like a team who are fighting every step of the way.

    Good luck,
    Cindy

    unclaw
    THANKS for responding, so kind of you.
    I hope your dad is ok.
    Clear

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