Operable vs. Inoperable Brain Tumors

Beckymarie
Beckymarie Member Posts: 357
edited March 2014 in Brain Cancer #1
Appreciate the responses I received on difference in prognosis for inoperable vs. operable Lv. 4 glios. We are at a teaching hospital, UMASS Levine Cancer Center in MA. Also had a 2nd opinion at Beth Israel, as well as some input and opinions from a nuerosurgeon in OR. We were told in the beginning that life expectancy is a year or less, but with new drugs 25 to 30% are lving past year. Six months later we are told that because tumor is inoperable, prognosis is less optimistic. Just wondering if anyone in our situation can add any information.

Comments

  • sue Siwek
    sue Siwek Member Posts: 279
    #2
    gilos is a general term for
    gilos is a general term for brain tumors. need more specific definition. for instance my husbands had a glioma but after a biopsy it was determined that he had an anaplastic astrocytoma grade 3. this was nearly 10 yrs. ago. i don't understand the kind of tumor your husband has other than it is a grade 4 which is serious. my husband has survived nearly 10 yrs. and a grade 3 is very serious as well. he was inoperable as well. you are going to a wonderful hospitals but i do know that they are having success with level 4 brain cancer. you just have to insist that you are not going to go willingly . there are many clinical trials that may be an option for you. ask about them. if it is your only option i would take it. my husband did and it gave him time. 6 mos. later an approved drug came out that helped him. he is cancer free for nearly 4 yrs now. he also had five weeks of radiation, and stereo tactic radiation as well. this is a man who was slapped with an added curse, parkinson's disease! he is struggling on. mentally he is capable of doing killer sudoku and reading on his kindle 2. life is not perfect but he is with us and we as a family are grateful.
  • infoneeded
    infoneeded Member Posts: 23
    #3
    My husband was diagnosed
    My husband was diagnosed with GBM Stage IV. Prognosis is very grave even with surgery and treatments. Radiation and chemo didn't help but he is on another treatment that God willing will help. Let me know what type of tumor your husband has. I have been looking for someone going through the same experience we are having to share information.


    God Bless,
    Chrissy
  • kempenl
    kempenl Member Posts: 13
    #4
    sue Siwek said:

    gilos is a general term for
    gilos is a general term for brain tumors. need more specific definition. for instance my husbands had a glioma but after a biopsy it was determined that he had an anaplastic astrocytoma grade 3. this was nearly 10 yrs. ago. i don't understand the kind of tumor your husband has other than it is a grade 4 which is serious. my husband has survived nearly 10 yrs. and a grade 3 is very serious as well. he was inoperable as well. you are going to a wonderful hospitals but i do know that they are having success with level 4 brain cancer. you just have to insist that you are not going to go willingly . there are many clinical trials that may be an option for you. ask about them. if it is your only option i would take it. my husband did and it gave him time. 6 mos. later an approved drug came out that helped him. he is cancer free for nearly 4 yrs now. he also had five weeks of radiation, and stereo tactic radiation as well. this is a man who was slapped with an added curse, parkinson's disease! he is struggling on. mentally he is capable of doing killer sudoku and reading on his kindle 2. life is not perfect but he is with us and we as a family are grateful.

    husband's surgery
    Hello - where is your husband's tumor located. His age?
    thank you, lk
  • Beckymarie
    Beckymarie Member Posts: 357
    #5
    kempenl said:

    husband's surgery
    Hello - where is your husband's tumor located. His age?
    thank you, lk

    Inoperable tumors
    My husband has a gr. 4 glioblastoma (GBM) He is 56 yrs old. The tumor is located very deep near the hypothalmus. We were told today that tumor is growing and the drug temador is not working. We need to make a decision whether to go with the drug avastin or participate in a new clinical trial.
  • Beckymarie
    Beckymarie Member Posts: 357
    #6
    infoneeded said:

    My husband was diagnosed
    My husband was diagnosed with GBM Stage IV. Prognosis is very grave even with surgery and treatments. Radiation and chemo didn't help but he is on another treatment that God willing will help. Let me know what type of tumor your husband has. I have been looking for someone going through the same experience we are having to share information.


    God Bless,
    Chrissy

    Inoperable Gr. IV GBM
    My 56 yr old husband was diagnosed with a Gr. IV GBM in March. Because it is located very deep in the brain need the hypothalamus, it is inoperable. We underwent 6 wks of radiation and chemo Temador. The initial MRI following radiation was hopeful, the tumor had shrunk. He then went on a temador maintenance program. After another MRI we followed up with his oncologist today. We were told the tumor is growing and the temador is not working. We must make a decision to either go on Avastin or participate in a clinical trial. Prognosis is very grim. Would like to hear back from you on your experience.
  • Beckymarie
    Beckymarie Member Posts: 357
    #7
    infoneeded said:

    My husband was diagnosed
    My husband was diagnosed with GBM Stage IV. Prognosis is very grave even with surgery and treatments. Radiation and chemo didn't help but he is on another treatment that God willing will help. Let me know what type of tumor your husband has. I have been looking for someone going through the same experience we are having to share information.


    God Bless,
    Chrissy

    Inoperable Gr. IV GBM
    My 56 yr old husband was diagnosed with a Gr. IV GBM in March. Because it is located very deep in the brain need the hypothalamus, it is inoperable. We underwent 6 wks of radiation and chemo Temador. The initial MRI following radiation was hopeful, the tumor had shrunk. He then went on a temador maintenance program. After another MRI we followed up with his oncologist today. We were told the tumor is growing and the temador is not working. We must make a decision to either go on Avastin or participate in a clinical trial. Prognosis is very grim. Would like to hear back from you on your experience.
  • Beckymarie
    Beckymarie Member Posts: 357
    #8
    sue Siwek said:

    gilos is a general term for
    gilos is a general term for brain tumors. need more specific definition. for instance my husbands had a glioma but after a biopsy it was determined that he had an anaplastic astrocytoma grade 3. this was nearly 10 yrs. ago. i don't understand the kind of tumor your husband has other than it is a grade 4 which is serious. my husband has survived nearly 10 yrs. and a grade 3 is very serious as well. he was inoperable as well. you are going to a wonderful hospitals but i do know that they are having success with level 4 brain cancer. you just have to insist that you are not going to go willingly . there are many clinical trials that may be an option for you. ask about them. if it is your only option i would take it. my husband did and it gave him time. 6 mos. later an approved drug came out that helped him. he is cancer free for nearly 4 yrs now. he also had five weeks of radiation, and stereo tactic radiation as well. this is a man who was slapped with an added curse, parkinson's disease! he is struggling on. mentally he is capable of doing killer sudoku and reading on his kindle 2. life is not perfect but he is with us and we as a family are grateful.

    My husband's tumor is a GBM.

    My husband's tumor is a GBM.
  • sue Siwek
    sue Siwek Member Posts: 279
    #9
    Beckymarie said:

    Inoperable Gr. IV GBM
    My 56 yr old husband was diagnosed with a Gr. IV GBM in March. Because it is located very deep in the brain need the hypothalamus, it is inoperable. We underwent 6 wks of radiation and chemo Temador. The initial MRI following radiation was hopeful, the tumor had shrunk. He then went on a temador maintenance program. After another MRI we followed up with his oncologist today. We were told the tumor is growing and the temador is not working. We must make a decision to either go on Avastin or participate in a clinical trial. Prognosis is very grim. Would like to hear back from you on your experience.

    nearly 10 yrs. ago my
    nearly 10 yrs. ago my husband was diagnosed with brain cancer, had radiation, stereotactic radiation and then temodar, which didn't work. at the time his best chance was a clinical trial. he was on it for 6 mo. not with out side effects but it did shrink the tumor and bought him time until an approved drug became available. i guess you will be taking a chance either way, with out chemo he may die if he does a trial it may not work. for us we were willing to take the chance. before you are accepted into a trial they will give you lots of information about it. if it is a 3rd level of a trial it is a better bet than a 1st or 2nd level. there are many requirements you must meet. in the trial my husband was in he had to have a return of his tumor. i would meet with the clinical trial person and get all the info then you can make an informed choice.
  • infoneeded
    infoneeded Member Posts: 23
    #10
    Beckymarie said:

    Inoperable Gr. IV GBM
    My 56 yr old husband was diagnosed with a Gr. IV GBM in March. Because it is located very deep in the brain need the hypothalamus, it is inoperable. We underwent 6 wks of radiation and chemo Temador. The initial MRI following radiation was hopeful, the tumor had shrunk. He then went on a temador maintenance program. After another MRI we followed up with his oncologist today. We were told the tumor is growing and the temador is not working. We must make a decision to either go on Avastin or participate in a clinical trial. Prognosis is very grim. Would like to hear back from you on your experience.

    We were diagnosed in May 09.
    We were diagnosed in May 09. My husband had surgery and then did chemo and radiation. The mri showed the tumor was still growing. We are now on a clinical avastin and tarciva.
    We will know in October if the treatments are working.
  • Beckymarie
    Beckymarie Member Posts: 357
    #11
    infoneeded said:

    We were diagnosed in May 09.
    We were diagnosed in May 09. My husband had surgery and then did chemo and radiation. The mri showed the tumor was still growing. We are now on a clinical avastin and tarciva.
    We will know in October if the treatments are working.

    Operable vs. inoperable
    My husband was diagnosed in March 09, underwent a brain biopsy but no further surgery. He also underwent radiation and chemo,and initial MRI showed tumor shrinkage. Unfortunately, the second MRI done 2 weeks ago showed the tumor was again growing. We started Avastin today and may transition over to a clinical trial if/when the tumor shrinks.
  • Beckymarie
    Beckymarie Member Posts: 357
    #12
    infoneeded said:

    We were diagnosed in May 09.
    We were diagnosed in May 09. My husband had surgery and then did chemo and radiation. The mri showed the tumor was still growing. We are now on a clinical avastin and tarciva.
    We will know in October if the treatments are working.

    Operable vs. inoperable
    My husband was diagnosed in March 09, underwent a brain biopsy but no further surgery. He also underwent radiation and chemo,and initial MRI showed tumor shrinkage. Unfortunately, the second MRI done 2 weeks ago showed the tumor was again growing. We started Avastin today and may transition over to a clinical trial if/when the tumor shrinks.
  • javigm123
    javigm123 Member Posts: 2
    #13
    sue Siwek said:

    gilos is a general term for
    gilos is a general term for brain tumors. need more specific definition. for instance my husbands had a glioma but after a biopsy it was determined that he had an anaplastic astrocytoma grade 3. this was nearly 10 yrs. ago. i don't understand the kind of tumor your husband has other than it is a grade 4 which is serious. my husband has survived nearly 10 yrs. and a grade 3 is very serious as well. he was inoperable as well. you are going to a wonderful hospitals but i do know that they are having success with level 4 brain cancer. you just have to insist that you are not going to go willingly . there are many clinical trials that may be an option for you. ask about them. if it is your only option i would take it. my husband did and it gave him time. 6 mos. later an approved drug came out that helped him. he is cancer free for nearly 4 yrs now. he also had five weeks of radiation, and stereo tactic radiation as well. this is a man who was slapped with an added curse, parkinson's disease! he is struggling on. mentally he is capable of doing killer sudoku and reading on his kindle 2. life is not perfect but he is with us and we as a family are grateful.

    Just diagnosed with an Inoperable tumor in my rt thalamus
    Hi Sue and co,

    The docs think its been there since birth/infancy. I am 26.They believe its a low gr .glioma. I have visual disturbances (film over eyes, stinging eye pain, static vision). I was told that this was caused by a weak upper right muscle. Unconvinced, I persisted which led me to the diagnosis. However, all but one doc think the eye symptoms are unrelated and the nuero ophthalmologist i saw last week cant explain my problems!!! ahhh They say its slow growing and usual looking. Some docs have suggested biopsy( claiming it can be done safely) while others have expressed concern over the biopsy causing unnecessary damage. A couple were firmly against biopsy. Some have even questioned the effectiveness of treatment on a low gr. glioma. I've decided to monitor it for 3 months. It didn't grow btwn jan and march, I doubt it grows btwn now and June. I think this rhino (its name) is behaving like a lazy hippo!

    Its encouraging to hear your husband's story. It would be great to exchange experiences. I hope you are both well.

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