astrocytoma in cerebellum, need advice

Posted by spangles @spangles, Jul 8, 2017

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.

Interested in more discussions like this? Go to the Brain Tumor group.

They didn’t offer radiation therapy they just said craintomy or they didn’t offer a biopsy. I hope she is in good hands:/ I am so scared…..

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Hello @kelliemm,

I’d like to tag a few members on this forum who have astrocytomas, and will be able to provide insight through their experiences. Please meet @cleahy85 @lynda1992 @jkenser @pilocysticadult32 @spangles. I’m also tagging Connect’s volunteer mentor @IndianaScott, and you may wish to read this discussion, too:
https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-a-polycystic-astrocytoma-as-an-adult-our/
Awake brain surgery, also called craniotomy, is a type of procedure performed on the brain while you are awake and alert. Here;s some information from Mayo Clinic about craniotomy:
http://www.mayoclinic.org/tests-procedures/awake-brain-surgery/home/ovc-20247843
@kelliemm, what symptoms did your sister have? If you’re comfortable, would you share a few more details about the type of brain tumor she has?

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She was sick and throwing up all the time and had headaches because she had migraines but she told me it wasn’t her typical migraine so she went to the Clinic and they told her she should probably go to the ER for a MRI and they told her found something and they told her they needed to keep her overnight. It was very very scary:( They found a brain mass on right frontal lobe it is about 4 CM and as I said it is a astrocoma ( low grade) My sister being put to sleep they didn’t give her that option which makes me even more scared for her!! I am a nervous wreck! I am her baby sister!!

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My mother has an astrocytoma grade 4, made a surgery tow monthes ago at the Amirecan unversity of beirut hospital, now she is under radiation and chimo thearpy ,what should i do and expect next?

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@ahmadkotaich

My mother has an astrocytoma grade 4, made a surgery tow monthes ago at the Amirecan unversity of beirut hospital, now she is under radiation and chimo thearpy ,what should i do and expect next?

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Welcome to Connect, @ahmadkotaich
You'll notice that I moved your message to the Brain Tumor group https://connect.mayoclinic.org/group/brain-tumor-support-group/ to an already existing discussion about astrocytomas. I did this so that you can meet others who have experience with this type of tumor like, @spangles @lynda1992 @jkenser @pilocysticadult32 @kelliemm and others. Click VIEW & REPLY in the email and you will be able to read past messages.

How is your mother recovering from surgery? Has she already started chemo and radiation? Any side effects?

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