17 year old boy with EC stage IV with mets to liver

jpturn4
jpturn4 Member Posts: 19
in Esophageal Cancer #1

Hi all,

 

My husband passed away in 2011 and I found this site to be so helpful in many ways, although I used to spend hours just looking for "hope", but the advice and tips were always welcome.

 

Today, I spoke to a mom of a 17 year old boy in Orlando FL, who has stage 4 with mets to his liver.  I don't need to tell any of you how he and his mom are feeling.  I am meeting with his mom soon and am a little out of touch with 2014 treatments etc.

 

Does anyone know if James Lucktich is the best surgeon in general opinon?  Also, Jaffar Ajani the best GI???

 

Also, is anyone has any stories of hope I can share with this family.

 

Thanks

 

Julie 

 

Comments

  • dfd24
    dfd24 Member Posts: 91
    #2
    story of hope

    hello,

    i write this to every new person. make sure he gets tested for HER2 . if he is positive he needs herceptin in his treatment.  it is very favorable to be able to have herceptin treatment

    we are in france and herceptin treatment is reserve for people who have metastatic disease in that it is not approved for people who don't have metastases.

    can't write more at this point.have an appointment. i can call you for free if you like if you send me a phone number by private message.

    my husband had a recurrence with a metastisi to his pleural membrane . it is now 4 years since diagnosis and two years since recurrence . he is still getting treatment but is feeling good.

    all the best,

    danièle

  • dwhite0002
    dwhite0002 Member Posts: 126 Member
    #3
    Hope

    Hi Julie,

    I am 39 years old and was diagnosed at age 32. I have survived. Please share this with your friend.

     

    David White

    Hillsboro, OH

  • goty2001
    goty2001 Member Posts: 71
    #4
    dfd24 said:

    story of hope

    hello,

    i write this to every new person. make sure he gets tested for HER2 . if he is positive he needs herceptin in his treatment.  it is very favorable to be able to have herceptin treatment

    we are in france and herceptin treatment is reserve for people who have metastatic disease in that it is not approved for people who don't have metastases.

    can't write more at this point.have an appointment. i can call you for free if you like if you send me a phone number by private message.

    my husband had a recurrence with a metastisi to his pleural membrane . it is now 4 years since diagnosis and two years since recurrence . he is still getting treatment but is feeling good.

    all the best,

    danièle

    agreed about her2+

    Herceptin has reduced my tumor & mets (to liver) to an undetectable level - I had identical diagnosis 2 years ago

  • Dad'sfight
    Dad'sfight Member Posts: 155
    #5
    dwhite0002 said:

    Hope

    Hi Julie,

    I am 39 years old and was diagnosed at age 32. I have survived. Please share this with your friend.

     

    David White

    Hillsboro, OH

    How frequent are you guys

    How frequent are you guys getting your Herceptin?

  • dfd24
    dfd24 Member Posts: 91
    #6
    Dad'sfight said:

    How frequent are you guys

    How frequent are you guys getting your Herceptin?

    herceptin

    hello,

    My husband gets herceptin every three weeks.

    Herceptin does not pass the blood brain barrier so one has to be careful about anything that might be brain related.

    all the best,

    danièle

     

  • mardigras
    mardigras Member Posts: 215 Member
    #7
    Stories if Hope

    Hello Julie,

    I am so sorry about your friend's son.

    My husband is a 2 year three months suvivor of EC.

    Here are a few tips for you that perhaps will help you to understand some current things about EC.

    HERCEPTIN will only be any good if the patient has the specific gene that it targets. It cannot be prescribed if you don't, so the first thing is to get tested for the gene. It is a breakthrough in chemo treatments.

    James Lukeditch is a great surgeon has has more experience than most people, but there are other fab surgeons. Your friend can ask people here and she will get a wealth of information and help.

    Our surgeon was in the UK, but the name James Lukeditch is whispered with reverence even the UK. Most of the people here are American, so they will be able to help you.

    Usually,  surgeons will only operate on stage three EC and in general mets to the liver will mean that an operation is not possible. 

    Having said this, the medical advancements in the past eight years are amazing and although EC is a horrible cancer, there are many stories from survivors and the treatments are getting better and beter.

    I can't imagine having a child with cancer and I will pray for this young man and his Mum.

    Most important is a diet rich in all good and fresh things, most especially antioxidents and vitamin c.

    Try and keep the weight up with lots of small meals and exercise where possible.

    I hope this helps. 

    Love, hugs and prayers,

    Marci

     

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