Need Advice inoperable brain tumor

My 58 year old husband was diagnosed September 12, 2017 with a brain tumor, via MRI.  He had been experiencing muscle weakness on his right side for a week and complained that it felt numb.  Since then he has had another 2 mri’s and a biopsy only, as the tumor was in his left temporal and a finger into cerebellum.  The initial pathology report showed a stage 2 astrocytoma, but the final showed signs of stage 4 glioblastoma.  Only treatment option given was radiation and Temodar chemo.  He is choosing to only do radiation.  It’s been 6 weeks since the biopsy and we still do not have a completed radiation plan or insurance approval.  The insurance company, blue shield pop, wants 3 plans.  His condition is worsening and he has no use of his right arm and hand and limited use of his right leg.  Speech is affected and he already suffers from extreme fatigue.  Just looking for some advice as to how to navigate this process.  So much info out there and his neuro oncologist spent very little time with us.  Any info you can share would be appreciated!

Comments

  • AnnissaP
    AnnissaP Member Posts: 632
    I cannot give you advice,

    I cannot give you advice, sorry. I just wanted to say I am sorry to hear about your situation.

  • Sten
    Sten Member Posts: 162
    Hi OneWonderWoman,

    Hi OneWonderWoman,

    I had an inoperable lymphoma tumour in my cerebellum in 2012 at the age of 68. I got several chemo treatments, then own stem cell collection, then high dose chemo, then own stem cell transplant, and then 2 years of Temodar. The tumour vanished during the first chemo rounds. Now I am quite OK, safe and sound.

    I hope the best for your husband and for you. Good luck!

    Sten

     

  • denaligatchell
    denaligatchell Member Posts: 1
    Sten said:

    Hi OneWonderWoman,

    Hi OneWonderWoman,

    I had an inoperable lymphoma tumour in my cerebellum in 2012 at the age of 68. I got several chemo treatments, then own stem cell collection, then high dose chemo, then own stem cell transplant, and then 2 years of Temodar. The tumour vanished during the first chemo rounds. Now I am quite OK, safe and sound.

    I hope the best for your husband and for you. Good luck!

    Sten

     

    Finished radiation and 3 months later its doubled the size

    Hi Sten,

    I have a brain tumor (Low Grade Glioma) in the occipital lobe. I finished 6 weeks of radiation on August 3rd. A few months later got my MRI, and the results were not good. It has doubled the size. Do you think if I did chemo it would help? my tumor is noncancerous. I am feeling discouraged and need advice please. 

  • AmyES
    AmyES Member Posts: 10 Member

    Finished radiation and 3 months later its doubled the size

    Hi Sten,

    I have a brain tumor (Low Grade Glioma) in the occipital lobe. I finished 6 weeks of radiation on August 3rd. A few months later got my MRI, and the results were not good. It has doubled the size. Do you think if I did chemo it would help? my tumor is noncancerous. I am feeling discouraged and need advice please. 

    What did your doctor say? I

    What did your doctor say? I would do the chemo if it is being recommended. Have you considered a second opinion? I have seen a ton of doctors over the years.  I have learned to become my own advocate. Make sure your doctor is taking time to answer all of your questions. 

    Prayers!

    Amy