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Gliosarcoma...doing it all and still dying.

JCee
Posts: 4
Joined: Mar 2017

My life partner of 12 years was diagnosed in November.  He is 70 and was in fabulous physical condition with no comorbidities.  Had surgery at Hopkins.  Grade 4, unmethylated gliosarcoma in the frontal lobe.  Chose to return to local medical center for radiation and TMZ.  We keep waiting for improvements, but aren't seeing any.  

Any one else out there with this?  It's pretty rare.

PapaTee
Posts: 1
Joined: Nov 2017

I am the blessed man who was DX'd with this mushroom growing in my head about 2 months ago.  Usual symptoms and had surgery to the right Temporal lobe in Chicago NW Memorial Hospital.  Had a good surgical outcome and now doing the Photon radiation along with the TMZ protocal.  In 5 hrs I'll do my 19th of 30 rad treaments.  So far only side effects are fatigue, hair loss at the site and now loss of taste and dry mouth.  Everything tastes bitter and I'm affraid of a loss of appetite before long.  I am grateful for no serious side effects though.  I don't like the prognosis of this monster but I have strong faith and a positive attitude.  I had my 62nd birthday last week and am married to my second wife now for 1yr 8mos.  I have a very close and supportive family of 5 grown children and 11 grandchildren.   My grandkids call me PapaT but that user name was taken.   I'm gonna fight this with all I have.  I want to live and by God's grace I will.

texhammer
Posts: 2
Joined: Jun 2018

PapaTee -- how are you faring in the tumor battle?  My spouse is just beginning the battle, so I appreciate any information about what to expect.  Have you had any change in the side effects?  Does your treatment include additional MRIs to measure the success of radiation?  

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