Anaplastic Astrocytoma

Newly Diagnosed AA Grade 3

longdecember — Fri, 13 Apr 2012 02:18:54 GMT

Hello everyone -

I am a 40 year old male who was recently diagnosed with an Anaplastic Astrocytoma Grade 3 in mid-March. It was discovered after I had massive seizures the morning of February 8th before I took my daughter to school and went to work. I spent a couple of stints in the hospital with a biopsy finally taking place in early March.

My seizures are under control and today I started chemo (Temodar) and radiation. Those two therapies will run concurrently for 6 weeks, with a follow - up MRI and additional Temodar therapy happening for several months afterwards.

Surgery was not an option due to the the tumors location (it is now about 11 cm in diameter) and in the right temporal lobe. The tumor is very diffuse and crosses motor and vision pathways. Surgery would likely leave me blind in the left eye with severe motor deficits (if not paralysis) on the right side.

My neurosurgeon told me straight up that I had 4 - maybe 5 years to live (best case scenario). I pressed my oncologist for the same information. She told me that if there was no progress made with the Temodar and Radiation, I would be looking at 2 to 2.5 years of life expectancy (though this is seen in only 15-20% of cases), otherwise, 4 to 5 years. They both said the benefits I had going in my favor were good overall health, relatively, young age, and no co morbidity.

I am still somewhate in shock. I have a 14 year old daughter and have gone on short term disaiblity from work in order to get through the daily radiation treatments and chemo. The seizure activity prevents me from driving and I don't live in a metro area that is public-transit friendly.

I don't know why I am posting here. I am just looking for people to talk to I guess. I feel utterly alone and overwhelmed, though my family has been so fantastic and helpful. I know it could be much worse. I am thankful for what I have, but I could really benefity fromt talking to people who have been through the same thing and have faced the same challenges.

While I have committed to remaining strong throughout this, I also know that I have to prepare for the likely eventuality that I won't see my 45 th birthday. Having a child means that there are things I need to get in order and things I want to DO!!! I have a life to live here while I have been given this time and I intend to live it!

Peace and well-wishes to everyone on here...please say hello if you would like to talk!

Jason

New website

docsbydocs — Thu, 05 Apr 2012 05:48:29 GMT

Hello, to everyone on this forum. I am a neuro-oncologist, and I see patients every day in my clinic with brain and spine tumors. I wanted an outlet to provide my own content on brain and spine tumors, and so I created a website, docsbydocs. I am writing content for our site at the moment, and will recruit others in the field of neuro-oncology to do the same. If you are looking for specific, topic-driven content for brain and spine tumors, please check out my site at www.docsbydocs.com. It's completely free. We also take requests for articles that we would write and post to our site. You can reach us at info@docsbydocs.com, on Twitter at @docsbydocs or on Facebook. I hope we can help provide all information that you may seek.

Thanks!

In desperate need of advice for daughter with a father with grade III astrocytoma

Cloverkitt — Fri, 16 Mar 2012 20:14:23 GMT

I need advice. My father, 77, was diagnosed October 2011 and underwent surgery to remove the tumor, he then did a round of 30 days of Temodar and radiation. He seemed fairly stable so in February 2012 I moved back to California from Texas (I'm 27 and still trying to get my life started). We just got the results from his last MRI and in only 5 months it shows a recurrence of the tumor with a lot of inflammation and it seems pretty aggressive. He will not undergo another surgery nor is he interested in exploring other chemo therapies and I understand and support his decision. He will be doing IV steroids every two weeks, but that is it.

I know it's different for everyone but how long will he be in a lucid state before he start going really downhill? It's over his speech center and has already affected his balance and of course, his speech. I am not working right now and can move back to Texas if I need to, but is that the right choice? Has anyone else experienced this same scenario who might have some advice to help me make a decision?

Hello old friends... Up date on Becky

gene&becky — Thu, 09 Feb 2012 03:28:09 GMT

Hi there! So sorry not to be back sooner or more regular. I have just been negligent!

I am pleased to announce that Becky's MRI at UCLA, Jan 5, 2012 was good. No changes. This was her eighth year anniversary since her 2004 grand maul seizure and Dx of AA3.

Her bout with breast cancer that started fall of 2009 is going well. No signs of recurrence. She is on a drug called Femara for another three years as a safe guard.

Bottom line in all this is, I want to tell everyone who goes through these battles that YES there is survival in this terribly scary desease. We have to keep thinking of ourselves as being in the survivor's side of the averages. And always be willing to go over the next hurdle.... because in most cases, there are more hurdles to clear on the way to victory.

God bless you all. Our email # is g-b2011Att.net. It will be far easier to check in with me that way if you think I can answer a question.

Gene

Anaplastic Astrocytoma Grade IV - Long term survior, but have a question!

Slay — Mon, 24 Oct 2011 03:25:41 GMT

I was diagnosed in 2004 and I have had 3 surgeries at Hopkins to date. I had a fairly long run the first time and then have had 2 surgeries since. I feel like this is a bit of a 'roller coaster' to be honest. I have to say that ANYTHING that deals with money, gets me worked up...and I really don't know what the next 'right move' is. My whole family has been lucky to have had the life we have had...there are many who have not been as blessed as we have.

My question is, I feel like I am 'losing a bit of control'. I have read many posts on other websites that talk about things like not being able to 'afford' a brain tumor...however, how was I to know that I would be diagnosed at age 37? We live in a nice home, have my family there and I wish that I would have looked at this as a 'no cure yet' disease. We moved into this house at the height of the 'housing boom' and have lost substantial money in our investment. On top of that, both my wife and I took out loans on our retirements, so deeper in debt. I am not struggling, but my company (Bank of America) continues to 'downsize' and I could be next...you just never know.

My main question is, can I apply for the short term benefits, then long term benefits that I have been paying on 'forever'. I bought these both BEFORE I was diagnosed and it seems that I should be able to apply. I would love to spend time with my wife and son...before the times runs out, but I am at a loss.

Anyone that knows anything about this is welcome to comment.

Thank You,
Mike Slayman

Question??

Grey4Gandy — Fri, 14 Oct 2011 17:57:31 GMT

Hi Everyone,

This is my first time posting here. My husband was diagnosed back in April, 2011 with a Grade II/III Astrocytoma. Life has been a little crazy since that day. He has done 33 proton radiation treatments and almost finished his first round of chemo but we had to stop due to his platelets and WBC dropping to dangerously low levels. He has been off chemo for almost 2 months now cause levels are still low.

My question is do any of you out there have problems with symptoms that are like restless leg syndrome. He's been having this more frequently lately and now and it's also in his arms. I hate always calling the docs for every little problem so if any of you have insight it is much appreciated. Also if you had radiation how long did it take for your hair to grow back??/

Follow my hubby's journey www.foszor.com/blog

my brother recently diagnosed with Anaplastic Astrocytoma

Anonymous — Sat, 08 Oct 2011 01:06:15 GMT

I am new to the group and totally a layman as for as the medical terms are concerned but since my brother is recently diagnosed with anaplastic astrocytoma, i need to know about the treatment and specialists who can be contacted for his treatment. It started with a memory loss problem, difficulty in reading, he could see the digits but could not give it a sequence to dial a number on cell phone, could not remind names of freinds while talking about them. His MRI report was clearly showing a GBM in left temporal lobe and also at another location. He was operated on 29 sep2011, and by now he has almost recovered but still in the hospital his biopsy report indicates that he has anaplastic Astrocytoma. He is still in the hospital and Doctors are planning to refer him to oncologist for radiations and then chemotherapy. plz advise me for his future treatment and best treatment centres.

Brother AA Grade 3

pamv — Mon, 03 Oct 2011 22:55:40 GMT

I am new to the group and was hoping to find anyone with information that could help me understand the effects of my brothers next round of treatments.
My brother was diagnosed 8.5 years ago and has had two resections, stereotactic radiation, radiation. in the last 9 months he has been on temodor, carboplatin, irinotican and avastin. Tumor is continuing to grow rapidly. Dr's are suggesting combination of gleevac with hydrea and the avastin. If he cannot get approved for this treatment then avastin with VP16.
Has anyone taken these drugs? What side effects did you experience? Did it help?
Does anyone have any other suggestions? Thank you

Upcoming NBTS webinar on Malignant Gliomas

BeccaJ at NBTS — Wed, 17 Aug 2011 20:39:26 GMT

Hi everyone,

There's an upcoming free webinar on December 6, 2011 from 11AM -12 PM PST on Malignant Gliomas featuring Dr. Timothy Cloughesy, UCLA Neuro-Oncologist. To learn more about it, please visit the NBTS event calendar. Registration will not open until mid-October, so please revisit the link at that time to reserve your spot. Please also tell others that might be interested in the program.

Sincerely,

Becca
Program Manager, Patient Services

help for my sisters pain

jholly — Thu, 21 Jul 2011 13:35:37 GMT

Hi everyone ~
My sister was diagnosed 5 years ago with Anaplastic Astrocytoma. At first she helped take care of her grandson and then she had knee surgery. She has never fully recovered from the knee surgery and so has just gone down hill from there. She sits all day long and counts everything in site. This she was doing even before the knee surgery. She has a very hard time getting up and getting back down, walking and just about doing anything. She complains of her back hurting, both legs hurting, shoulders, but they have only found some arthritis in MRI's. Her husband is beginning to believe it is all in her head and that he should start pushing her to get up and do things. I can be talking to her on the phone and she puts the phone down to do something and forgets i'm on the other line. She forgot were she parked the car the other day and took her 4 hours to find it (finally with some help). She has this "I don't care" attitude. I guess my concern is should we push her or is there something more wrong that an MRI just can't show us and is this typical of her brain cancer. I feel she is happy and content and just leave her alone, but maybe her husband is right and letting her sit all day long is only hurting her in the long run. Any help would be greatly appreciated. Thanks so much.

Anaplastic Astrocytoma Grade 3

By His Wounds You & I Have Been Healed — Fri, 15 Jul 2011 20:56:19 GMT

I just wanted to start this post for anybody that just needs to talk regarding brain tumors or treatments. My story begins in April of this year. My wife woke up to me having a seizure and called 911. After they did the scans at the emergency room the surgeon came in and said I had a brain tumor. It really didn't hit me at that point, being 23 years old I really did not understand what a brain tumor was. A week later I am at the hospital to have a resection done on the tumor, I had my surgery done at Lutheran Hospital in Fort Wayne, IN. All I really remember about this point is just hugging family and telling them that I love them. The last thing I remember is my pastor praying with me.

The surgery took 3 hours. I woke up in a lot of pain but I got all the medicine to take care of that. I believe I spent 6 or 7 days in the hospital recovering from the surgery. When I got home I remember looking in the mirror at all the staples. I just hated looking in the mirror, I just couldn't believe it was happening to me. But I was just ready to recover and get back to work. While we were waiting on the biopsy I just kept praying that it would not be cancer and everything would be fine.

When I went in to meet with my Surgeon regarding the biopsy I got the news that it was a malignant tumor. I could not believe it, I just came home and cried. To be honest I was just so mad with God. I felt that he betrayed me. I was living the American Dream, married, a great job, I was just enjoying life. I felt my life was over. I thought it was my death sentence.

Then I woke up and really started to realize what is important in life. It's not keeping up with the Jones' or anything it is surrounding yourself with your loved ones and living your life for God. Now I just set and talk to God all day I will just be setting there and I will start singing praises of joy to the Lord.

I am currently on a clinical trial for my treatments. The trial I am on is to see if Temodar really works for brain tumors. It has four different arms with 6 1/2 weeks of radiation and every arm has a different dosage of Temodar. I was randomly drawn into the arm that has Temodar while on radiation and then once the 6 1/2 weeks is over it is 4 weeks off then on chemo 5 consecutive days in a month for 12 straight months. I have 2 more weeks of the radiation. I was scouring the internet for all the different treatments but decided to stay in the trial since the arm I am in is the standard of care.

The side effects I am having from the treatments are fatigue and nausea feelings. I am taking Zolphram for the nausea feelings. I take it a couple of times a day if needed, my stomach just feels like its in a not at times. The fatigue has been overwhelming during the middle to the end of the week. I feel so much better on the weekends since I do not have radiation.

I was so scared when I found out it was cancer. The best advice I can give to help you get through being scared is to turn to somebody to talk with them. It can be anybody family, friends, survivors, God. I know when this first happened I just kept it bottled up inside because I had the tough guy attitude. I played football and wrestled in high school so I hated showing any kind of weakness and I didn't want to talk because I knew my family and friends were hurting. The best thing I did for myself was to start talking to people about this. It helped me release so much of the fear and anger.

When somebody asks me how I am doing now I can say with a smile, Great! I am just keeping the mindset I am going to kick cancers butt. It does not have a hold on me. I remember when I was doing research on this type of cancer and found out there is not a definite treatment and the statistics online are not good I would just cry. But now I tell everybody that when I get done with the treatments and there is no more cancer they will have to change those statistics. I believe this is the mindset that we have to have to get through this tough time. I know I am going to come out this as a stronger person, a better husband, and a stronger christian.

For anybody that needs to be uplifted a great radio station you can stream from a computer or your phone is www.star883.com and an awesome website that gave me more hope is http://www.survivorandcaregiver.com/default.html this website was created by a brain tumor survivor. I will keep adding updates to this as I go through the treatments.

Give Thanks Under All Circumstances,
Justin

Forum Upgrade Scheduled for August 8, 2011

Patient Services Team — Wed, 13 Jul 2011 20:43:31 GMT

Dear Community,

We have scheduled an upgrade to our current forums for Monday, August 8th, 2011. On this date all topics and replies posted in the forums will be moved to a new upgraded format. When you navigate to the My.BrainTumorCommunity forum page you will land on a different looking page than you are used to starting Monday, August 8th. We believe the new format will be easier to use and we will have a number of features available to you that are not available in this current version. To help you learn the new format we will set up a question and answer discussion in the new format titled, "Welcome to Discussions: Q & A." It will be located at the top of the page. Feel free to post any questions you have or review FAQs others are asking.

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Is it Grade 3 AA or Grade 4 GBM? What should we do?

JuliaBelle — Wed, 29 Jun 2011 10:53:42 GMT

The neurosurgeon told us that the local pathologist said it was a grade 4 GBM, but the pathologist at Johns Hopkins called it a grade 3 AA, but "almost a grade 4". I suppose that means they will treat it as a grade 4. We are meeting with the radio-oncologist tomorrow. The neurosurgeon does not recommend surgery at this time because there is a 100% chance he will lose the right field of vision in both eyes, and a 25% chance he will lose his ability to read. He said at some point we will have to decide if surgery should be done.

I've tried to talk my husband into trying to get a second opinion at Duke, but he doesn't want to do it. He has complete faith in the neurosurgeon - who does have a great reputation, and has been a surgeon for more than 20 years. I did some research on him.

I'm not sure really what my question is. This is all just so upsetting and confusing.

Mary at NBTS — Thu, 23 Jun 2011 18:35:45 GMT

Update from Gene and Becky

gene&becky — Tue, 21 Jun 2011 20:53:05 GMT

It's June 21, 2011 and thankfully Becky continues her survival of AA3 brain tumor (dx Jan 2004) and grade 2 breast cancer (dx Sept 2009) We are in Torrance CA. near the kids. Becky is doing well. Just joined a fitness club to rebuild energy level and try to lose lots of weight brought on by sitting around and eating the wrong things. Our best to all our wonderful survivor friends here. Sorry for being scarce.
My word for those newly dx'd and looking for encouragement from survivors is... YES there is survival from brain tumors. Don't turn your back on it. Keep on searching and learning about the disease and pursue every suggestion and opportunity.
If you can, go see the fine team of Neuro-Oncologists at M.D. Anderson in Houston. They will determine the best treatment and then work with your local hospital and oncologist to administer the plan. It's a difficult thing to travel back and forth a lot but you will be giving yourself the chance to get top notch treatments.
God bless each and every patient and care giver!