My GBM...

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Jeffandmira
Jeffandmira Member Posts: 2
in Brain Cancer #1

Unfotuneately last year I had my GBM seizure and then had my first surgery...  Started withe the Temozolomide and the radiation for the 40 days...  After that I went back to U of Washington for other surgery in September.  After that one, I then went on the Avanstin since about April/May this year.  All though I was a little tired with the Avanstin, I seemed at least normal...

I'm in Montana and really love my doctors as well as our Bozeman Cancer group is directly connected U of Washington in Seattle.  I've really liked the people that I've dealt with.  About 6 weeks ago, my eyes are not playing very nice and not only be "dizzy" maybe equilibrum?  In having an eye test, I can't really see the upper right of my eyes.  I must have a tumor that may have gotton bigger and maybe that's pushed on my eye line...  Not only does my speach and such gets bad since I can't remember the right word.  I feel like I can remember things internally, just not sure what I might say... :)

About 4 weeks I started the chemo one again with the CCNA options and a little more steroids which makes me like my food.  I can add my weight after eating, but I have always stated pretty small so by the morning I'm back to weight...   I think my body and my tumer likes eating!  ;)

The first surgery I read into the natural but that didn't change anything, so this last time, I went back to just eating normail.  Obviously I haven't figured out the solution...  I personnally love my work, but now that my eye and dizzy thing is starting to make me conserned.  I read another article about Garlic being researched again, but the CCNA supposidly isn't good with that... 

My questions around this is similar to what a lot of people have already been talking about it...  Is there anything that actually does anything...  I truley think that everybody is different, but this is a bummer...  I'm 38 years with my wife and a twin 8 year old boys...  It makes me cry often as I'm concerned that my family has to deal with this.  Obviously I'm afraid that I might not be able to make money for the family and both my boys and wife don't get to have as much fun since I have to be watched...

I'm sorry if my message spelled/said since my eyes/dizzy makes this a hard to type...  The internet makes me realize that it's been anywhere from 9 months to 15 years which makes me think that it is different for everyone, but this is frustrating...  Some of the "current" options have been used for that last 50 years....

Didn't want to get too long, I'd be more that happy to response!  Thanks for reading if anything!

Thanks

Jeff 

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  • Rayanmckee
    Rayanmckee Member Posts: 14
    #2
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    GBM

    Hey Jeff,

     

    Seems we are in a similar boat. I have a 7 yr old daughter and a great wife that I don't want to be

    burdening them with this crap. I had to retire from work, so I have had alot of time to research about foods, etc.

    I try to stY AWAY from processed foods, and sweet stuff. Cancer feeds off sugar. Changed alot of my food choices. Have you heard about the acid foods vs alkali foods? Interesting stuff. I switched to honey in my coffee.. I can't give up the coffee!

    I am trying to stay upbeat and keep my naps short so I can spend time with my kid. I don't want her to remember her Dad was in bed sick all the time.

    I have been off chemo since Feb 2014 after a total of 13mos on Temodar (I hate that stuff).

    So, doing OK for now. My tumor was near my right ear, so lost vision of upper left side on both eyes.

    Are you on SSDI ? I am getting it, also getting it for my daughter. I know how stressful worrying about providing for family is.

    I couldn't go back to work because I get lost and have too much confusion, tough to get my route done as a garbageman!

     I am sorry you got the dizzies, I get crazy-eye with optical migraines, so they do this caleidoscope vision-thing.

    I just wanted to say Hi! I don't get on computer much, about once per week. Be well,

    Ryan in San Francisco

  • RoughneckJeff
    RoughneckJeff Member Posts: 2
    #3
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    My GBM

     

    I know your issues. I had surgery in April. 7 weeks of radiation and Chemo pill Temodar. I am currently on my 1 month break before starting my 5 days a month Temodar schedule. My last brain scan was clear. I know your pain all too well. I could handle the sickness, tiredness and anything else but watching my wife and kids cry and feel absolutely helpless was the worst. I sometimes wanted to give up, but when my 3 year old granddaughter prayed to Jesus to heal her poppie one day out of the blue, i knew I had to keep fighting. I did and I will continue. Attitude is everything. Love your family and never ever give up.  God bless.  

  • stevehartzler
    stevehartzler Member Posts: 3
    #4
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    My mom's GBM

    My mother had her GBM diagnosed in Sept '08, when she was 69. They let us expect she had 10 to 14 months. She had the surgery, then radiation and temodar. She's still alive, and no sign of growth. She takes 4.5mg of naltrexone every night. It's not for cancer at all, but it's supposed to help "orchestrate" her immune system. She also takes turmeric with every meal. No idea if either of those things actually help, but they haven't hurt. She takes .5mg dexamethaxone, and that makes a noticeable difference. As far as diet goes, she avoids processed foods. I'd say she avoids sugar too, except she loves dark chocolate and eats it all the time.

    She's had dizzy feelings on and off all these years. Sometimes she'll fall 2 or 3 times a day, sometimes a month or more can go by without a fall. She lost the upper left quadrant in her field of vision. They don't expect her to get it back, but it hasn't gotten worse either. She used to type a mile a minute, but now is very slow. Can't play guitar anymore, but still plays piano. Can't cross-country ski anymore, but can still kayak. 

    Nobody seems able to tell her what to expect. When we go for her yearly MRI's, they just send the Dr. with the lowest seniority to tell us the good news and have us schedule the next visit. I was told that the more years someone survives GBM, the better the odds get for each following year. 

  • I_Promise
    I_Promise Member Posts: 218 Member
    #5
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    stevehartzler said:

    My mom's GBM

    My mother had her GBM diagnosed in Sept '08, when she was 69. They let us expect she had 10 to 14 months. She had the surgery, then radiation and temodar. She's still alive, and no sign of growth. She takes 4.5mg of naltrexone every night. It's not for cancer at all, but it's supposed to help "orchestrate" her immune system. She also takes turmeric with every meal. No idea if either of those things actually help, but they haven't hurt. She takes .5mg dexamethaxone, and that makes a noticeable difference. As far as diet goes, she avoids processed foods. I'd say she avoids sugar too, except she loves dark chocolate and eats it all the time.

    She's had dizzy feelings on and off all these years. Sometimes she'll fall 2 or 3 times a day, sometimes a month or more can go by without a fall. She lost the upper left quadrant in her field of vision. They don't expect her to get it back, but it hasn't gotten worse either. She used to type a mile a minute, but now is very slow. Can't play guitar anymore, but still plays piano. Can't cross-country ski anymore, but can still kayak. 

    Nobody seems able to tell her what to expect. When we go for her yearly MRI's, they just send the Dr. with the lowest seniority to tell us the good news and have us schedule the next visit. I was told that the more years someone survives GBM, the better the odds get for each following year. 

    other things

    My sister is not on chemo ( for AA3) anymore, but she is still on a bunch of supplement, including turmeric and melatonin. Almost 3 years ago, we researched what else we could do on top of the surgery, radiation, chemo and added a few things that did not have side effects. Other things we considered out of the boxe that we did was to inject chemo directly into the ressection cavity. From her molecular profile of tumor we added for a short time ( 6 months) another chemo xeloda. Things we did not do but considered strongly were DCA IV treatments and acyclovir. 

  • Jeffandmira
    Jeffandmira Member Posts: 2
    #6
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    I_Promise said:

    other things

    My sister is not on chemo ( for AA3) anymore, but she is still on a bunch of supplement, including turmeric and melatonin. Almost 3 years ago, we researched what else we could do on top of the surgery, radiation, chemo and added a few things that did not have side effects. Other things we considered out of the boxe that we did was to inject chemo directly into the ressection cavity. From her molecular profile of tumor we added for a short time ( 6 months) another chemo xeloda. Things we did not do but considered strongly were DCA IV treatments and acyclovir. 

    Thanks for responses!

    Nice to hear from everyone!  Sorry for the time, didn't see the responses...  Since I don't have any chemo radiation items, I'm slightly looking into the health/diet options...  Read the Washington state u internet doc about garlic clove morn/evening...  About three weeks in and smell like garlic.  Cut it up and wait 15 min and i then have it chopped with a salsa real quick.  Lucky, I love hot sause and garlic...  It can get spicy...  :). Also getting my sugar down as best so with the steroid...  Having the steroid 4mg morning/lunch/evening...  Sleep is usually 1-3 more on 2 all night usually a pee...  Yeah, would love a full night of sleep!  Did trying at least walking an hour each day but my knees are a little week but strangly the walk is okay...  Get out of a sit is when the strength is hard....  Strange...  My blood white and platelate are going up 1.2 and 52 hopefully the red goes up, it's 3.52...  Sugar was up from 133 to 138 but I have it down to 92 last week...  I have my blood checked at the hospital two times a week but I'll maybe going once a week now the blood is going up...  I know my "dizzy"/equalibrim and not seeing to the right side of my eyes is probably due to the tumors but maybe the health side may help...  But I get to be a home dad/husband and work on getting stress down!  :)

    I also shown a book called radical remission, and it is interesting...  

    Hope everyone one is going well, as good as we can have...  Live day by day and enjoy family and friends!

    jeff

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