kulaken's Journey:

Patient: Brain and Spinal Cord Tumors in Adults > Glioma > Astrocytoma > High-Grade Astrocytoma (also called Glioblastoma)

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Male, Age: 54

  1. 1
    • kulaken
    • Experience with High-Grade Astrocytoma...
    over 5 years ago
    kulaken's Avatar

    Cancer has spread/Metastasized

    Oh No

    Was initionaly diagnosed with Glioblastoma from the original biopsy , now has changed to ademacarcinoma with unknown primary, the DR's seem stumped ... I was assured that if the neurosurgeon was to remove said tumor , that he could almost guarantee a severe loss of eyesight,, hence my choice for a biopsy at that time , and chose radiation for now .... As a self employed carpenter , i can no longer drive or use my tools in a safe manor , due to this tumor on my right visual lobe , after 30 yrs of working 6-7 days a week , and all the sudden not able to produce for myself , to say the least , makes me feel like what now ? After several ct's , mri's , as well as a pet , upper and lower gi tract screening , they cant find a primary ,, kinda spookie ,, for now they are trying to shrink this 4 cm thing.....

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  2. 2
    • kulaken
    • Experience with High-Grade Astrocytoma...
    over 5 years ago
    kulaken's Avatar

    Dexamethasone

    Drug or Chemo Therapy

    This Dexamethazone they have me on to help reduce the adema presure has some pretty ugly side affects , anxiety, mood swings , racing heartbeat, but it does seem to be making a difference after a few weeks , eyesight is not coming back but it isnt getting any worse either. I'm not sure if it is helping with my balance , or if I'm simply adjusting to the loss of eyesight , and compensating for it .the Dr's cant say either .

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • kulaken
    • Experience with High-Grade Astrocytoma...
    over 5 years ago
    kulaken's Avatar

    Depression/Anxiety

    Side Effects

    To many to list , Fatigue , confusion , Hair loss , Mood changes ,nerve damage ,( Peripheral Neuropathy) , Skin changes ( rash) , Weight gain , Sexual side affects , Extreme Anxiety..

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  4. 4
    • kulaken
    • Experience with High-Grade Astrocytoma...
    over 5 years ago
    kulaken's Avatar

    Clinical Trial

    Living in Hawaii , has it's drawbacks , as far as state of the art care , am researching places to send my files in search of other options for a better than 6% chance of survival with this type of treatment ... Clinical Trials may be an option , will have to wait and see what the outcome of sharing my diagnosis and the intake staff at some other facility's,,,

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  5. 5
    • kulaken
    • Experience with High-Grade Astrocytoma...
    over 5 years ago
    kulaken's Avatar

    External radiation

    Radiation

    After the 11 th treatment , i have noticed a huge difference in how i feel after treatment ,, im doing full brain radiation , 27 treatments are scheduled, just started loosing hair , extremely fuzzy , disoriented , tired , some bone pain , nausea, after a session , i questioned about the difference of how these symptoms were changing , i was told that it is caused by accumulation , and was normal. And was assured that i should expect the same to continue to happen , and possibly get a little worse as the sessions continue ...

    Painless Experience: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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