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    TyNickChrisMom asked a questionRare Cancers

    My 3 year old Son has been diagnosed with PNET of the left femur. I would like to talk with someone who has also been through this.

    • Aimeesmom's Avatar


      Sorry for the delay in responding. Dave thank you for sharing my information. I'm sorry to hear about your son, please know I am here if you need me. I actually got myself an education with your question. I was unaware that PNET's can occur outside the brain.

      Primitive neuroectodermal tumors (PNET) form a group of tumors defined by their appearance that are thought to develop from primitive (undifferentiated) nerve cells in the brain. They are rare tumors and their incidence is not well defined.
      One of a group of cancers that develop from the same type of early cells, and share certain biochemical and genetic features. Some primitive neuroectodermal tumors develop in the brain and central nervous system (CNS-PNET), and others develop in sites outside of the brain such as the limbs, pelvis, and chest wall (peripheral PNET). Also called PNET.

      Ewing's sarcoma can occur any time during childhood and young adulthood, but usually develops during puberty, when bones are growing rapidly. The tumor may arise anywhere in the body, usually in the long bones of the arms and legs, the pelvis, or the chest. It may also develop in the skull or the flat bones of the trunk.

      Did your son have surgery? I would be happy to do more research for you. If your on Facebook there is a Ewing Sarcoma group, not sure how many have PNET/Ewing. There is a PNET group as well but that is all brain tumor related. Also, you son is younger then most that I have known DX with Ewings.

      Just to let you know my daughter Aimee pasted at the age of 12 in 2008 from a DIPG brain tumor. Please know I'm here if you need me.

      about 9 years ago
    • acalltofaith's Avatar

      Hey! I am a Ewing's Sarcoma survivor of 10 plus years now. I wouldn't know where to begin to answer your question, but any question you have send it to me and it will be easier to take one or two at a time. I will be praying for you and your son.

      over 8 years ago
    • Bigmama's Avatar

      I have been researching however make sure to call for a second opinion Pathology I am in the middle of a discussion with 2 hospitals because it sometimes looks like another type . Go to Pnet foundation they gave me alot of info

      almost 8 years ago
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    Decision Point

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    TyNickChrisMom shared an experience

    Radiation (External radiation ): In February I was just getting to commit to traditional radiation. Then as I was researching the side effects I stumbled upon Proton Therapy. To make a long story short...the benefits of Proton Therapy were huge compared to traditional radiation. So that's the route we are going. He just finished treatment #17 out of 31.
    He has treatment every week day. He is sedated for every treatment. His leg is discolored and a little red...but not too bad.

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    TyNickChrisMom shared an experience

    Side Effects (Hair loss (alopecia)): Not all of his hair is gone. For the first 3 months his hair thinned out a lot. The 4th month he lost all of his eyelashes and eyebrows :-(

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    TyNickChrisMom shared an experience

    Side Effects (Mouth sores): Mouth sores all the time!! Little to nothing can be done about those.