A Cry for help- A Cry for Contact !

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  • TKennedy
    TKennedy Member Posts: 4
    #22
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    sweetblood22 said:

    clearblue
    hang in there. Please contact the dr who I have refferred you to. Don't get upset, just focus on trying to read up on the info I am trying to get to you. I will try to get you in touch with those people too. I know it's over whelming. This is a nasty genetic illness, that is a fact. But do not let the statistics get you down. we just need to try and get as informed as we can and keep fighting.

    Don't wait for papers, go to the source. Contact Dr. Auerbach.

    sweet

    Another great resource
    Another great resource is the National Cancer Institute (NCI). They have an open epidemiological study for FA patients. If you are interested in learning more, you can call them at 301-881-7593. Dr. Blanche Alter has been working with FA patients for years. She is an incredible resource. If you decide to participate in her study, she will either ask you to complete questionnaires or NCI will fly you to her office for a comprehensive evaluation with FA specialists (if you are in the USA). She can help refer you to doctors that know about FA as well.

    Dealing with FA and cancer can be so overwhelming. If there is anything I can do for you (like send you information), please let me know.

    All my best,
    Teresa
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #23
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    Clearblue said:

    Got Ya! Clever woman.
    Sh-t, shouldve done this ages ago.
    Time is of the essence.

    not so clever
    it's okay, you are just tired and overwhelemed. get some rest dude! quit typing. :)
  • TKennedy
    TKennedy Member Posts: 4
    #24
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    sweetblood22 said:

    Hi Theresa
    I believe I have visited your website a couple of years ago and downloaded a sort of handbook of sorts. Guidlines and info on Fanconis. Any info you can send me would be appreciated. I will private message you my contact info if that would be okay.

    I have met in the past with Dr. Arleen Auerbach, Dr. David Kutler, Dr. Farid Boulad, Dr. Alfred Gillio, and Dr. Steinberg in the past. I watched out for my bloodcounts over the years but I was unaware of the connection with head and neck cancer and FA.

    Thank you so much for posting here for us. I would really love to contact another FA patient as I have never spoken to one. I am hopin clearblue also sees this post. I should forward it to him.

    I would love to attend one of those gatherings, but I don't think I have the stamina to travel that far away yet. I would like info on it and the scholarship assistance program, please.

    Hi Sweet
    Yes, please feel free to private message me your contact information and I'll send you our information on FA and the meetings. I'm glad that you have been in contact with the above doctors! All are excellent doctors and know FA extremely well. I understand that you may not have the stamina to travel or attend a meeting right now, but I would be happy to share the information with you, should anything change.

    I'm glad that you are on this forum, as you are very positive and upbeat.

    All my best,
    Teresa
  • Clearblue
    Clearblue Member Posts: 186
    #25
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    TKennedy said:

    Hi Sweet
    Yes, please feel free to private message me your contact information and I'll send you our information on FA and the meetings. I'm glad that you have been in contact with the above doctors! All are excellent doctors and know FA extremely well. I understand that you may not have the stamina to travel or attend a meeting right now, but I would be happy to share the information with you, should anything change.

    I'm glad that you are on this forum, as you are very positive and upbeat.

    All my best,
    Teresa

    T Kennedy -In Focus (for the time being)
    In 2008 my wife had aesophagal cancer and was operated on by the most mindbogglingly patient sensitive and uniquely professional surgeon Prof. Mark Orringer of Univ Mich, Anne Arbor.

    At that time i relentlessly indirectly emailed doctors, through medical people i was directly in contact with. We faced the question of what type of regime to follow.These names were in fact forwarded to us by Blanch Alter adn Prof. Orringer.

    The names were as follows:
    -Arlene Forastiere,
    -Elaine Gluckman from Paris who deals with marrow transplantaion
    -Zvi Fuks -head of Radiotherapy at Memorial Sloan Kattering,
    -Califano at Hopkins,
    -Singh at Memorial
    -van Wales at NIH,

    Blanche Alter didnt know Gillison .

    van wales at the time said: If the patient does not want to risk the radiation, erbitux could be considered, but is not proven to be of benefit in this situation. The response rate to erbitux is about 10 percent.ALL their comments dealt with studies prior to our opp (esophagectomy+gastric pullup) in 2008.

    Now 2010 and three reoccurences later we are on Erbitux. Two infusions to date.
    I would like to know if there has been any other experience with FA warriors who have had treatments since then.

    I have been fortunate to find Sweet on this forum and hope to take my somewhat erratic and somewhat out of focus correspondence with her futher. Its suddenly 03.30am and im in focus.
    So where do i go from hear.
    You may post me on my personal csn mail, till i set up a gmail/hotmail account shortly.
    Please forward to Sweet too if you havent already been in direct contact with her.

    Thank you
    Sincerely
    Clear.

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