GBM - any advice appreciated!

TONYnKY
TONYnKY Member Posts: 1
edited March 2014 in Brain Cancer #1
Last May (2009) my brother (age 51 and in excellent health) was diagnosed with GBM - Grade 4. It was removed at St Thomas in Nashville. Dr said he got all that he could find. Since then he has completed radiation and continues a week of chemo (Temodar) each month. Last week Dr saw something on MRI - thought it most likely scarring from treatment but wanted to be sure so he ordered a PET scan. Learned late today that there is cancer progression around the orginal tumor site. DR is suggesting another surgery followed by Avastin but said if he wants to go somewhere else he will arrange. He said he could probably get him in to MD Anderson, Duke or San Fransico. We want to do what ever is the best. Any suggestion, advice or thoughts would be very much appreciated. THANK YOU and God Bless you all.

Comments

  • For Aunt P
    For Aunt P Member Posts: 1
    #2
    Your not alone
    My aunt also in near perfect health at age 58 all a sudden saw flashing lights while sitting at her desk at work last year, passed out and was taken to a near by hospital where they discovered a spot on the brain. Biopsy results stage 3 or 4 astrocytoma. First craniotomy was done in August (Cedars in L.A.) results came back stage 2 or 3 which made us happy at the time. She also was started on Temodar and Radiation. Three months later second MRI found growth around the same tumor with new tumor growth. December 09 second crani done (Cedars in L.A.)and results came back GBM Stage 4. She then qualified for a clinical trial after 4 weeks on the new drug third MRI showed no new growth at two other sites but a small spot in another area, very disappointed Cedars explained she no longer qualified for the clinical trial but could possible try another. After a long conversation we decided to go with Avastin and another drug and I am sorry I don't remember the name. She has been on this therapy for approx 2 months and doing really well. Two weeks ago the MRI showed the "spot" has not grown and looks as the other sites are stable. A positive and loving environment will help him and you need to be the cheerleader in this game. Research the doctors they want to send him to. I love the doctors at Cedars at the Johnny Cochran Brain Cancer Institute. Dr Black and Dr. Wu are incredible and are known world wide. The Internet can leave you very sad and depressed and at times not your friend so I suggest finding a physician you can trust and feel comfort in and keep the faith. My blessings go out to you and your brother.
  • NCAA XC
    NCAA XC Member Posts: 25
    #3
    For Aunt P said:

    Your not alone
    My aunt also in near perfect health at age 58 all a sudden saw flashing lights while sitting at her desk at work last year, passed out and was taken to a near by hospital where they discovered a spot on the brain. Biopsy results stage 3 or 4 astrocytoma. First craniotomy was done in August (Cedars in L.A.) results came back stage 2 or 3 which made us happy at the time. She also was started on Temodar and Radiation. Three months later second MRI found growth around the same tumor with new tumor growth. December 09 second crani done (Cedars in L.A.)and results came back GBM Stage 4. She then qualified for a clinical trial after 4 weeks on the new drug third MRI showed no new growth at two other sites but a small spot in another area, very disappointed Cedars explained she no longer qualified for the clinical trial but could possible try another. After a long conversation we decided to go with Avastin and another drug and I am sorry I don't remember the name. She has been on this therapy for approx 2 months and doing really well. Two weeks ago the MRI showed the "spot" has not grown and looks as the other sites are stable. A positive and loving environment will help him and you need to be the cheerleader in this game. Research the doctors they want to send him to. I love the doctors at Cedars at the Johnny Cochran Brain Cancer Institute. Dr Black and Dr. Wu are incredible and are known world wide. The Internet can leave you very sad and depressed and at times not your friend so I suggest finding a physician you can trust and feel comfort in and keep the faith. My blessings go out to you and your brother.

    YES!! MD ANDERSON!!!!
    Or another of the centers of excellence!!
    I can't say enough for the wonderful work they did for my wife and continue to do for my wife!!
    The lady at this number..713-792-5401....took a call on Tuesday and wanted my wife in the "Brain and Spine" Center on Friday!!!
    Best of luck to you!
  • MAJW
    MAJW Member Posts: 2,510 Member
    #4
    DUKE..........
    You may want to look into getting your brother to Duke in Durham NC......the doctor there is Dr. Henry Friedman.......he is a leading authority on Glioblastoma Multiforme......and has made great strides in treatment and survival times.....
    I wish you the very best......
    God Bless and Peace be with you

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