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spangles
@spangles

Posts: 4
Joined: Jul 08, 2017

astrocytoma in cerebellum, need advice

Posted by @spangles, Sat, Jul 8 8:09pm

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.

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Colleen Young, Connect Director
@colleenyoung

Posts: 3388
Joined: Jul 23, 2014
Posted by @colleenyoung, Sun, Jul 9 7:11pm

Welcome Spangles.
Thank you for including the details of your diagnosis and a picture of your side effects in this first post. I, too, hope that other members on this forum who have astrocytomas will be able to provide insight through their experiences. Please meet @cleahy85 @lynda1992 @jkenser @pilocysticadult32 @myminnie @spammy and @helendee.

Spangles, good for you for advocating for yourself when you knew something wasn’t right. Indeed pilocytic astrocytoma is rarer in adults. You may be interested in reading this discussion too.
– Has anyone been diagnosed with a pilocytic astrocytoma as an adult? http://mayocl.in/2lmRVVZ


spangles
@spangles

Posts: 4
Joined: Jul 08, 2017
Posted by @spangles, Sat, Jul 15 2:06pm

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.


spangles
@spangles

Posts: 4
Joined: Jul 08, 2017
Posted by @spangles, Sat, Jul 15 2:36pm

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.


lynda1992
@lynda1992

Posts: 5
Joined: Dec 25, 2016
Posted by @lynda1992, Sat, Jul 15 6:07pm

Live one day at a time. Be thankful for each and every day! We are both brain tumor survivor’s!! My surgery was 25 years ago, already. I had an intraventricular pilocytic astrocytoma. Since it was benign, I wasn’t required to have radiation or chemo. Sorry, I can’t help you there. My new problem is I started having grand mal seizures, again. No neurologist has been able to give me an answer as to why. Yes, it’s very frustrating. I’m also in unchartered territory. How many patients are still alive this many years later? Very few. If any. Have you ever heard of the American Brain Tumor Association? (ABTA.org) Please check out their web-site. It’s awesome! You may find some answers there to your questions.


Scott, Volunteer Mentor
@IndianaScott

Posts: 334
Joined: Oct 22, 2015
Posted by @IndianaScott, Sat, Jul 15 6:38pm

Hi @lynda1992 I am Scott and while it was my wife who had the brain tumor for 14+ years, I was the one who had a series of grand mal seizures. I agree with you the not knowing is tough, especially when we tend to live in a world that more often than not makes ‘snap’ decisions and recommendations when it comes to healthcare. The source or sources of my seizures were never identified I was on Dilantin for years and then over another year they weaned me off. I’ve only had one series since then, but the memory of them is never far from my mind.

Wishing you continued strength & peace!


jkenser
@jkenser

Posts: 23
Joined: Dec 27, 2016
Posted by @jkenser, Sat, Jul 15 7:00pm

Hello =) My name is Jessica and I had surgery to remove a tumor from my right temporal lobe December 30th 2016.. 6 short months ago. They ended up taking half of my right temporal lobe (I didn’t need that part anyway). I completely understand your concerns and frustrations about healing. I am a nurse and am almost done with my doctorate to become a nurse practitioner.. Not only do I have the personal experience of having brain surgery, but I also have the medical knowledge. I will say that our surgeries were in different locations which makes our recoveries slightly different. Having brain surgery is just like having a traumatic brain injury. The healing takes time, and by time I mean a long time. It has been a little over 6 months for me and I still struggle with daily fatigue, what I call a constant brain fog, issues with peripheral vision, and my right ear has been plugged since surgery. I also struggle with bouts of anxiety. I have done extensive research on this and everyone seems to say the same thing… It takes a long time to heal and we need to give ourselves time. The brain is a remarkable organ and will heal itself over time. I have talked to people that have said they started feeling “pretty normal” at about the 1 year mark, but again everyone is different. I will send you my number in a private message. Feel free to call me anytime.. whether you have questions, want to vent, or just want to talk to someone else that has gone through brain surgery. I will definitely keep you in my prayers for a quick recovery. Make sure you are eating healthy and getting plenty of rest =) You deserve it!


Colleen Young, Connect Director
@colleenyoung

Posts: 3388
Joined: Jul 23, 2014
Posted by @colleenyoung, Sat, Jul 15 7:43pm

Spangles, I’m glad you’ve connected with a few other members here. I will also tag additional members @myminnie @chuck58201 @kansastumor @martyc2016 and @dawn_giacabazi who have had experience with Temodar (temozolomide). Hopefully they will also join the conversation.


spangles
@spangles

Posts: 4
Joined: Jul 08, 2017
Posted by @spangles, Mon, Jul 17 6:04pm

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


Colleen Young, Connect Director
@colleenyoung

Posts: 3388
Joined: Jul 23, 2014
Posted by @colleenyoung, Mon, Jul 17 7:53pm

Hi Spangles,
When I @tag other members in a message, they receive an email notification that they have been mentioned in a comment. This is what helped bring Lynda, Pilocsticadult and Scott into the conversation.


pilocysticadult32
@pilocysticadult32

Posts: 3
Joined: Apr 19, 2017
Posted by @pilocysticadult32, Sat, Jul 15 8:08pm

Hi Spangles! Welcome to the group. Like @lynda1992, my Husband had a pilocytic astrocytoma but in the right frontal lobe. We are coming to 4 years since diagnosis. He was 32 at diagnosis. The surgeon managed to remove the entire tumour and no radiation/chemo was required so unfortunately, I’m can’t provide any advice re temodor. He still goes for yearly MRIs, and it goes without saying that every review brings much anxiety. Stay positive!

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