The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

38 year Survivor

pattin
pattin CSN Member Posts: 2
in Brain Cancer #1

My daughter had a brain stem glioma at age 16 months and we were told she would die within 3 months. they did radiation and she started getting better! Her tumor melted away - a true miracle, we thought! Now at the age of 38 that same radiation is slowly taking her life. She has had 3 major "stroke-like" events and many small ones that have put her in a wheelchair and are slowly robbing her of her speech, thoughts and life.

Is anyone else going through this after a similar bout with radiation. I guess we are lucky she survived this long, but, you know, it is never enough!

Like Care

Comments

  • rbarkan
    rbarkan CSN Member Posts: 5
    #2
    Dear Pattin,
       I am a 33

    Dear Pattin,

       I am a 33 year old medulloblastoma survivor of 26 years and am also experiencing symptoms common to your daughter's. You might want to try getting an appointment with a neurologist, an ENT doctor, and vestibular, occupational, and physical therapists - they did wonders for me and I am now able to walk and function independently. Also ask a social worker or search online for the phone numberyour local Center for Independent Living - all the best to you and yours and God Bless.

    Like Care

Discussion Boards