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Am I the only one on the planet?

kenneuf
Posts: 3
Joined: Feb 2010

I was diagnosed with a oligodendroglioma level 2 in April of 2006. Had the infamous "awake craniomoty". The surgery was very successful in removing over 95% of the tumor in my right side frontal lobe. After 10 weeks I was able to return to work. Did not have any other treatment at that time. This January, I had to have a second "awake craniomoty" to remove some more tumor that apparently was not taken out during the first surgery. My brain distorted and my motor cortex was pushed out of place making it impossible to differentiate as tumor growth. The operation was successful in removing the remaining oglio part pressing on my motor cortex and I do not have any symptoms at all. What concerns everyone is that a part of this tumor had changed in to a more nefarious level 3 Anaplastic Oglio. It is next to/under a fairly large vein in my brain that prohibits surgery. I am going over treatment plans with my surgeon on how to treat this most unwelcome guest. (My mother in law even sound like a better idea). Anybody have this? It seems very rare and not a lot of specific info for this type of tumor. Some people win the lottery and some get this I suppose.

arkansasbrains's picture
arkansasbrains
Posts: 38
Joined: Oct 2009

hello. my husband also had an oligo 2. but there is more to the story than that... it's all on my profile. please have a look and my husband's treatments on our "about me" page and let me know if you have any questions. we are still in the thick of it here. we heard that only 4% of brain tumors are oligodendrogliomas. it's nice to know others are out there.
my name is sydney.

kenneuf
Posts: 3
Joined: Feb 2010

Thanks for sharing your experience with me, I am 38 years old and live in Rochester NY.
Since this is pretty rare, it is nice to know someone out there is livin' and dealin' with this. I am scheduled to have Stereo Tactic radiation on the 24th of this month. (focused beam) and I am starting Chemo this week. Temodar. Lets keep updated. Thanks very much for replying.

tommybear
Posts: 112
Joined: Oct 2009

At least I haven't, and my friend, Sydney, said that you were going for it soon. After reading your message - you will think it is a breeze - can't imagine having an awake craniotomy. I had a craniotomy in August for a Grade II Astrocytoma where half of the tumor was ressected- then stereotactic radiosurgery in December. I am doing fine, not any side effects from the radiation, other than my face being swollen and puffy for about a week afterwards. The radiation is nothing, the halo itself that they used to keep my head still is what was difficult for me. Will they put a halo on you for the radiation?

I've been told by my doctor that we may not see any results from the radiation for at least six months, I was fortunate that my tumor is slow growing at this point, but that also accounts for the slow response to radiation.

Wishing you the best, take care. You will be fine throughout all of this - if I can handle it, anyone can!

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