GBM IV What a shock!

Susan M.
Susan M. Member Posts: 8
in Brain Cancer #1

My husband had a gran mal seizure the 7th of January and we are now into the "gold standard treatment" for his type of tumor.  We are hoping that the radiation doesn't take out his right eye.   The anti-seizure medication is making him a little testy and anxious, and he is sleeping alot.     We know what the odd are in buying time, but my husband is going to fight like hell and I am going to fight for him too.

 

As an adjunct therapy we are going to get him into Ketosis, if we can.   He is NOT a type I diabetic so we don't think that this will harm him.

 

Susan M.

Comments

  • manwithnoname
    manwithnoname Member Posts: 402
    #2
    We did Ketogenic diet

    The tumour grew more rapidly.

  • Susan M.
    Susan M. Member Posts: 8
    #3
    manwithnoname said:

    We did Ketogenic diet

    The tumour grew more rapidly.

    Ketosis

    As everyone's tumor is different, react differently for each person, and the fact that we have nothing to lose at this point,  we are going to go for it.   I am not sure that they let you into clinical trials early on. Not sure about that however.   No one is offering us anything at all except to keep our chins up and collect all the prayers that we can.   We are doing just that.

     

    Any and all prayers accepted.  Thank you. 

     

     

  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #4
    Susan M. said:

    Ketosis

    As everyone's tumor is different, react differently for each person, and the fact that we have nothing to lose at this point,  we are going to go for it.   I am not sure that they let you into clinical trials early on. Not sure about that however.   No one is offering us anything at all except to keep our chins up and collect all the prayers that we can.   We are doing just that.

     

    Any and all prayers accepted.  Thank you. 

     

     

    I'll be praying!

    Hi, Susan.

    I will be praying for your husband. I can't tell you how sorry I am that you and your husband are facing this. 

    I don't know anything about the ketosis diet, but if your oncologist says it is okay to try it along with your husband's conventional treatment, I say go for it. Even if it doesn't have a huge cancer fighting benefit (but I hope that it really does help), I still think that there's a mental benefit to be proactive and to try every option available as you battle this disease. Otherwise, you will feel like, "What if we would have tried that diet....." 

    You probably have found this site already, but here it is, just in case you haven't seen it yet: 

    http://www.clinicaltrials.gov/ct2/results?term=GBM&Search=Search

    Please keep fighting hard and please post here on csn and let us know how you and your husband are doing.

    Love and blessings,

    Cindy in Salem, OR

  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #5
    Susan M. said:

    Ketosis

    As everyone's tumor is different, react differently for each person, and the fact that we have nothing to lose at this point,  we are going to go for it.   I am not sure that they let you into clinical trials early on. Not sure about that however.   No one is offering us anything at all except to keep our chins up and collect all the prayers that we can.   We are doing just that.

     

    Any and all prayers accepted.  Thank you. 

     

     

    I'll be praying!

    Hi, Susan.

    I will be praying for your husband. I can't tell you how sorry I am that you and your husband are facing this. 

    I don't know anything about the ketosis diet, but if your oncologist says it is okay to try it along with your husband's conventional treatment, I say go for it. Even if it doesn't have a huge cancer fighting benefit (but I hope that it really does help), I still think that there's a mental benefit to be proactive and to try every option available as you battle this disease. Otherwise, you will feel like, "What if we would have tried that diet....." 

    You probably have found this site already, but here it is, just in case you haven't seen it yet: 

    http://www.clinicaltrials.gov/ct2/results?term=GBM&Search=Search

    Please keep fighting hard and please post here on csn and let us know how you and your husband are doing.

    Love and blessings,

    Cindy in Salem, OR

  • Susan M.
    Susan M. Member Posts: 8
    #6
    cindysuetoyou said:

    I'll be praying!

    Hi, Susan.

    I will be praying for your husband. I can't tell you how sorry I am that you and your husband are facing this. 

    I don't know anything about the ketosis diet, but if your oncologist says it is okay to try it along with your husband's conventional treatment, I say go for it. Even if it doesn't have a huge cancer fighting benefit (but I hope that it really does help), I still think that there's a mental benefit to be proactive and to try every option available as you battle this disease. Otherwise, you will feel like, "What if we would have tried that diet....." 

    You probably have found this site already, but here it is, just in case you haven't seen it yet: 

    http://www.clinicaltrials.gov/ct2/results?term=GBM&Search=Search

    Please keep fighting hard and please post here on csn and let us know how you and your husband are doing.

    Love and blessings,

    Cindy in Salem, OR

    Ketosis

    Cindy,

    Thank you for your words of encouragement.  You are right when you say that to have a feeling of having at least some control is useful.   My husband and I, and our children, need this.  It may not do any good at all,  but we have to try.  

    My dad was diagnoised with lung cancer at 49 years old, and decided on no treatment at all; he just gave up.  That hurt us all, but it was his decision and we respected it.   But, as my husband states, "I am not going down without a good fight!"

    We are aware that the first MRI might show some increased in the size of this monster.  I am not sure, but I think some of it will be scar tissue from the radiation.   I really don't know as this is all still so new.  We will see.

    Thank you to the link to all the trials.  I had not seen that site yet.   I will try to post when I can.   I am finally able to go to bed at night now without being afraid.   My husband doesn't have any problem falling asleep after he takes his evening anti-seizue drug!

     

    Love and Blessings to You and all of Yours.

     

    Susan M.

     

  • manwithnoname
    manwithnoname Member Posts: 402
    #7
    Susan M. said:

    Ketosis

    As everyone's tumor is different, react differently for each person, and the fact that we have nothing to lose at this point,  we are going to go for it.   I am not sure that they let you into clinical trials early on. Not sure about that however.   No one is offering us anything at all except to keep our chins up and collect all the prayers that we can.   We are doing just that.

     

    Any and all prayers accepted.  Thank you. 

     

     

    That's true...

    Some people did well on Ketogenic, it is VERY difficult though. Check out Ben williams for GBM info. 

    If you can afford it Prof. Slavin in Israel.

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