intraocular melanoma in a child years old ( IPILIMUMAB)

vicky36
vicky36 Member Posts: 2
edited March 2014 in Childhood Cancers #1
Hello:.

i can tell you about my nephew. His name is Alvaro and he is 2 years old. He lives in Madrid (spain) and he has 2 brothers and sisters.

the doctor diagnose him an intraocular melanoma 6 months ago. They say this kind of cancer is extremely rare in children. In spain, doctors didn´t know almost anything about it. In September, he was treated by removal of the right eye. The doctors told us that it´s the first time they can see the melanoma because Alvaro didn´t have the common mark in his eye but the eye seemed a big grey mark and bigger than the other one.(I don´t know to explain it better). Later he begun a tomotherapy just around the eye. after checking that the rest of the body was empty of carcinogenic cells.

When he finished (2 months ago) he was resting happy at home but last week he looked tired and my sister took him to the hospital. The diagnosis is. metastasis in a lung, with a mark in the other one and in the liver too. He has started with chemotherapy 6 days ago.

I can´t read almost nothing about this kind of cancer in children. Doctors says that they don´t know what is the best way to work because it´s extremely rare and they don´t know how Alvaro will respond to the treatment. I can´t understand why international doctors are not interested in my nephew with so rare melanoma (if it´s really rare like spanish doctors say). I friend of mine works as a doctor in the Anderson hospital in Huston, and he told us about so strange cancer in a child too.

wE GOT A DRUG WHICH NAME IS IPILIMUMAB (IPI). iT WILL BE THE FIRST TIME PHYSICIANS WILL USE IT IN SPAIN LIKE COMPASSIVE USE ONLY. wE´LL START IN 2 WEEKS.

I don´t hope my sweet nephew will recover but i need help, please, to understand, to know anything else about this intraocular melanoma.

We are thinking to travel USA, St. judes, Texas children hospitals? but we are afraid about the best for the child.

In advance, thank you very much.



Vicky gonzález

Comments

  • Mel Mikulak
    Mel Mikulak Member Posts: 7
    #2
    a good online resource
    Vicky,

    Please check out www.ACOR.org

    American Cancer Online Resource

    You can subscribe to a list specifically for the cancer you're speaking of. There you will find many many people who will answers for you.

    I wish you and your family the best throughout this battle.

    Melissa

Discussion Boards