spangles (@spangles)

Listen carefully to what may happen if the tumor is removed. I had a diffuse astrocytoma grade 2 removed from my left cerebellum in March 2017. It was discovered (but called a cyst or low grade unidentified growth) 20 years earlier but my doctors said not to worry about it and did not check it again until 2017 when I began getting dizzy and dropping things. I am sure surgery saved my life, but my life isn't all that great because of the location of the tumor and the damage done by surgery and radiation. I've lost my standing and walking balance and left side coordination of my arm and hand, and my eyes won't focus. I can't drive or do the art work or gardening I once did. My head is extremely sore where they did the surgery. I live 2,000 miles from Mayo and can't seem to find any local medical professionals to help me.
Would I do it again? Ask me in another year. My advice is to get multiple second opinions to try to determine what will happen if you do nothing, and how you will function after surgery, radiation, and chem takes at least a year of your life. Good luck.

Still not sure if I should contact the members you mentioned and how, or what.

I checked out all the members you listed and none are active so I do not know if I should contact them. Plus, my tumor is listed as only a “diffuse astrocytoma, grade indeterminate”, The pathology considered a pilocytic astrocytoma, but it lacked classic features such as “biphasic appearance, Rosenthal fibers, and/or eosinophilic granular bodies”.
I don’t know where else to look for advice. Even some help on how to deal with Temodar would be much appreciated.

Thanks, Coleen. How would I get in touch with the other people you mentioned? I really could use some advice on what to expect and how long it will last.
I see Dr. Buckner at Mayo in Rochester, and like most docs he says everybody is different when I ask what to expect. Just finished my first 5-day Temodar (300 mg daily) cycle since completing six weeks of radiation with Temodar in Rochester. It makes me feel awful, Coupled with feeling seasick and weak, I can’t eat and can barely navigate across the room.

80 percent of the left side of my cerebellum was removed recently, followed by radiation and Temodar for six weeks, which ended late May 2017. I am scheduled to repeat chemo in 28-day cycles for a year. No one has been able to precisely identify or grade my tumor and it’s gene combination (Infiltrating astrocytoma, IDH wild type, ATRX retained, TERT not mutated, p53 not mutated, FGFR1 and NF1 mutated.) has not been found in medical literature. I need help figuring out what to expect and whether my symptoms will ever end. I am so tired, and off balance that I careen around like I am drunk.
The tumor was found 20 years ago after an auto accident, and I was told it could not be identified and thus should be monitored with an MRI every year or two. In 2005, after an MRI, my doctor said to stop worrying, the tumor was a harmless cyst. So I did as I was told until late 2015, when I started dropping things and had trouble lifting my legs to go up steps. My doctor prescribed hearing aids, more exercise, blood pressure meds (four) and sent me to PT to relocate crystals in my ears. None of this helped and my clumsiness, vertigo, and blood pressure kept getting worse. I kept asking about the tumor in my cerebellum, but the doctor said it was not involved. I finally insisted on an MRI in late February 2017, and three weeks later had surgery to remove a 2.5 x 2.8 x 2 cm cerebellar tumor that was pressing on my brain stem.
I am told that a primary tumor in the cerebellum is very rare, and that most occur in very young children with a few in late teens or young adults. They often recover quickly and many live a long time. I am 72, albeit a young 72, at least before this. Now I have scalp pain with pimples all over my bald head, my eyes won’t focus, I have unending nausea that is not helped by the usual meds, my left ear is blocked and can’t hear, and I can’t control my movements on the left side.
I would love to hear any information and ideas you would care to share. I am hoping this forum might connect me with folks in a similar situation. Thanks.