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.

Was diagnosed GBM

jjordan1232003
jjordan1232003 CSN Member Posts: 2
in Brain Cancer #1

I was diagnosed in August 24, 2004 with GBM on frontal left side. The tumor was the size of ping pong ball and the cist that was covering the tumor was the size of large lemon. The biopsy was sent John Hopkins hospital and diagnosed ether with GBM or ependymoma the surgery said both grade 3 or 4 aggressive was malignant. The surgery was 7.5 hours resected 99%; I had 31days radiation and 4 years of Temodar (5 days every month 300 mg). In 2008 we decided to stop Temodar after MRI showed no recurring tumor.  March of 2010 still no recurring tumor, but in August 2012 the tumor was back. I was diagnosed with giant-cell astrocytoma malignant ependymoma both are gliomas but the ependymoma is the cerebrospinal fluid.  So in September 8, 2012 surgery resected 99%, in October had radiosurgery Gamma Knife and back to Temodar (5 days every month 360mg).  On May 31, 2013 the tumor has come back and now just waiting what next.

Like Care

Comments

  • Rayanmckee
    Rayanmckee CSN Member Posts: 14
    #2
    GBM astrocytoma

    I am sorry to read your tumor is back. I am curious about why it changed to astrocytoma. Freckin Brain tumors, shat a beast! Stay positive, good luck in this next stage. 4 years off Temodar before reccurence is great, I think. I want off Temodar myself. Take Care! Ryan

    Like Care
  • justmirmar
    justmirmar CSN Member Posts: 8
    #3
    i was diagnosed in dec. 2012

    i was diagnosed in dec. 2012 and every thing was great. they removed 100% of the tumor and radiation and chemo and i even had a clear first mri. for the second i had another tumor and got the cyber knife. then july i had the third and they found three. i am going to have more cyber knife done maybe 3 and then i am going on avastin. they are aggressive and the doctor says the temador is not working. he said most people end up on this but not usually this fast. goodluck to you i hope evreything turned out well for you

    justmirmar

     

    Like Care

Discussion Boards