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Anaplastic Astrocytoma Grade 3 Survivor

ThomasVanVoorhis
Posts: 10
Joined: Oct 2011

Hello all, my name is Thomas and I am an AA3 survivor and just recently found this site and have chosen to post my story for encouragement and inspiration to others that have been diagnosed with this or other cancers. I will give you a brief history so you can somewhat see WHO I am.

I was born December 29, 1970, this is just so you know my age, I am not going to make you read my autobiography, lol. I went into the service at the age of 18 and served almost 10 of combined service, US NAVY and US ARMY. I am a combat veteran and a very independent person. My life has been filled with excitement, from fast roping out of helicopters into the bush, playing guitar and singing on the stages of Nashville, riding down Main St of Sturgis on my Harley, working on a horse ranch in New Mexico, to driving across the country in an 18 wheeler haulin freight, this was my occupation when I was I was diagnosed in late 2006.

I started having to sleep a lot more than usual and I was having bouts of confusion and memory loss, for instance, I would might tell someone that I done one thing or another and a few minutes later I would tell them again. The confusion was a big thing and actually was the straw that broke the camels back, as they say. I was driving to a shopping mall in an adjoining town which was a straight shot down the highway and got confused as to what exit to take. I had been to this mall thousands of time. It was then I decided to go to my doctor and get a check up. I thought I had developed diabetes, as this runs in my family. I was tested for diabetes with negative results, this was good, but I still could not understand why I was having these issues. They tested me for Alzheimer's and, of course did blood work and labs and so on and so forth. Then, decided to do a CT scan. There it was, looked like a gulf ball in my head. You would really have to know my sense of humor to appreciate what I said to the doctor that I had a brain tumor. Anyway, I was called into the doctors office and the doctor said, "Thomas, your CT came back and it is showing a tumor." I said, " Is that all, well at least it's not a cavity, I hate going to the dentist". He, of course, looked at me like I was nuts. So from there the ball started rolling. I was referred to a neurosurgeon, who said that it was inoperable for reasons i do not recall. We eventually heard about Dr. Jon Tew from University Hospital in Cincinnati, Ohio who specialized in inoperable tumors. I was sent for numerous different MRI's and other tests and finally got my surgery date. At this point it was not confirmed that it was cancer, just a tumor that needed to be removed. The location of the tumor was along the motor strip of my left frontal lobe. Loosing mobility of the right side of my body was a concern, but the concern for loosing mobility of my right leg was an even bigger concern. The surgery was performed with better than satisfactory results. I had no issues whatsoever, except a headache, this was GREAT. Then we found out that the tumor was in fact CANCER, this was bad. So, I went to see oncologist, radiologist and a long list of different people with different specialties. I received a report that stated, WITH treatments, my life expectancy was 1.5 years. God had other plans for me, and maybe this is it, to tell everyone of you who read this, YOU are WORTHY of a miracle, all you have to do is ask God for it, which my family and I did, A LOT. It was not an easy road to travel, but it is one that is behind me now. I did 35 radiation treatments, which most of you probably already know, is all the radiation you can do to your head in a lifetime, I also did around 65 chemo treatments, which was oral temodar. I was taking Kepra as an anti-seizure med. By this time I had lost everything and was living with my parents, AGAIN, after being on my own for so many years. This was an adjustment, not just for me, but for my parents as mainly because, all you mothers know this, in my mother's eyes, I was still a little boy. I was on disability for around 3 years, I think, and after I went back to driving a truck. I drove truck for probably a year and just did not enjoy it like I used to so, I am now working in the profession that I had previously went to college for, which is aircraft maintenance.

The moral, I guess, to this story is, even though you are given the news that you have cancer, even terminal cancer, it's not the end of the world. The doctors are just that, doctors. Your life, as they say, is what you make of it. God has the final say..........................

If you made it through all this, I thank you for reading it and I hope that I have been helpful. Please, feel free to leave comments and ask questions if you like. I will try to answer them them all. Again, thank you and God bless.

Almost forgot, I just had my annual MRI this past August and there were NO signs of any new tumors. :>)

There is a song that I used to sing quit often, at the end of the song I will send you a link that you can go to hear the song how it is sung by a friend of mine with a voice that make the word "heavenly" come to mind.

POWER POSITION

WHEN I NEED THE STRENGTH TO GO ON
THROUGH LIFE'S TROUBLED SEAS;
WHEN THE SKIES HAVE ALL GROWN CLOUDY
TIL MY EYES NO LONGER SEE
THERE A PLACE I GO FOR POWER
IT'S WHERE GRACE FIRST MET ME
IN THE POWER POSITION, DOWN ON MY KNEES

(CHORUS)
IN THE POWER POSITION, DOWN ON MY KNEES
I CAN TALK TO THE MASTER, HE'LL CALM THE RAGING SEAS
I'M NOT PERFECT IN THIS WORLD BELOW
BUT I'M FORGIVEN WHEN I FALL
INOT THE POWER POSITION, GOD HEARS IT ALL.

WHEN A KING WITH SO MUCH POWER
TOLD DANIEL "YOU CAN'T PRAY"
NO, DANIEL HE DID NOT LISTEN
SO THE KING PUT HIM AWAY
AND HE THREW HIM IN A LIONS DEN
WHERE HE FELL DOWN ON HIS KNEES
INTO THE POWER POSITION, GOD SET HIM FREE
(REPEAT CHORUS)

I used to sing this song at my Church, it helped Christians through some hard times and brought numerous lost souls to Christ. I do not have a link with me singing it, but my good friend Richard Propps does a wonderful job. The name of the band is "BLUE STORM" and they were wonderful, they split up awhile ago which was a very sad day for the music world. I heard recently that the fiddle player, Steve Williams had past away due to heart problems, I actually run that site. Well, let me know what you think.
God Bless,

Thomas

http://www.myspace.com/richardpropps

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Thank you for writing your story.
My sister has AA grade 3 also; she had surgery in august; 2 seizures; just finished radiation, but now has a big fluid collection in her brain. You seem to have done exceptionally well. Do you know what was the MGMT status of your tumor?

Julia

ThomasVanVoorhis
Posts: 10
Joined: Oct 2011

Julia,

I am sorry, but I do not know what MGMT of my tumor was.

Thomas

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Thomas-
I wrote earlier about my 18 year old having the same diagnosis in the same location. I feel relieved and blessed to have read your posting. May your life continue to improve and be a blessing to those around you. I am so looking forward to my daughter putting this all behind her! Praise be to God - you are a miracle and I am claiming one for my daughter Sarah! You can email us if you want: edna@camai.com.

Praying4All
Posts: 8
Joined: Oct 2011

You are truly an inspiration. May you continue to do well and shine light on others in their tough time. Thanks!

connsteele
Posts: 232
Joined: May 2011

your story sounds a lot like our son's. (age 34, dx 4-13-11, AA3,inoperable). A big issue for our son is losing his independence. You must know how hard that is to accept, as our son was living in Virginia, working a good government job, when he was diagnosed. He is now on disability and unable to live alone. We live in the Dayton, Ohio area, and had to move him back home with us. It's been hard on both him, leaving the life he created in the DC area and his friends. It's also been hard on my husband and me, as we retired just three years ago.

Are you able to live independently now? Any suggestions on how we can make his transition to living back home easier? Are you able to now work full time? Our son has some serious deficits with his balance and with his fine motor and stamina, so for now, I can't see how he'll ever be able to work full time again. But then, miracles do happen. You are one of them.

Thank you for sharing your story.

DLB21
Posts: 2
Joined: Mar 2008

My 30-year-old son experienced a seizure on December 16, 2007. He was in perfect health prior to that. We learned he had the tumor when they ran a CT trying to determine the source of the seizure. We got him into MD Anderson in Houston and Dr. Fred Lang performed the 14-hour long surgery. Dr. Lang was able to remove over 98% of the tumor. The radiologist argued that he thought Dr. Lang got it all. There were some cells that were identified as Type 3 in one particular area of the tumor so my son went through several weeks of radiation. He had very few side effects from the surgery. He had a little balance problem but that was quickly rectifide by physical therapy. After 6 months from the siezure, he started driving and went back to work. My son is married and had one son at the time of the seizure. He and his wife have subsequently had another son, who is now 2. My son must take Kumen for the rest of his life but has not had any further seizures. He has an MRI now every 4 months. His next one is tomorrow. So far, there has been no signs of regrowth. He speaks at a lot at functions telling his story. He and his wife are both very strong Christians and there is little doubt of the Miraculous healthing that he has experienced. We lead pretty normal lives with the exception of the week of the MRI. But we trust that our Heavenly Father has a plan for all of us and that plan is better than anything we could plan. We celebrate birthdays a lot more these days and are thankful for everyday we have together.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Good Morning-
thank you for giving hope to all of the subscribers to this discussion board. My daughter is only 18 and fighting for her life. She also has AA3 and is currently doing the chemo, which is very hard for her. At different times in this journey I feel so down and depressed, so I appreciate knowing there are people out there living good lives after such a dreadful diagnosis. We are Believers as well and our faith is the only thing keeping me going. God Bless you and your family.

ThomasVanVoorhis
Posts: 10
Joined: Oct 2011

Ya know, it used to break my heart when I would go for treatments and see all those young children having to go through the same thing that I was going through. It, to me, was just heartbreaking, after seeing a child in there I would never leave with a dry eye. Ya know, I started reminiscing about those hard times and rarely would I see a child that was not smiling. Hmmmmm, just food for thought.

There is a song that I used to sing quit often, at the end of the song I will send you a link that you can go to hear the song how it is sung by a friend of mine with a voice that make the word "heavenly" come to mind.

POWER POSITION

WHEN I NEED THE STRENGTH TO GO ON
THROUGH LIFE'S TROUBLED SEAS;
WHEN THE SKIES HAVE ALL GROWN CLOUDY
TIL MY EYES NO LONGER SEE
THERE A PLACE I GO FOR POWER
IT'S WHERE GRACE FIRST MET ME
IN THE POWER POSITION, DOWN ON MY KNEES

(CHORUS)
IN THE POWER POSITION, DOWN ON MY KNEES
I CAN TALK TO THE MASTER, HE'LL CALM THE RAGING SEAS
I'M NOT PERFECT IN THIS WORLD BELOW
BUT I'M FORGIVEN WHEN I FALL
INOT THE POWER POSITION, GOD HEARS IT ALL.

WHEN A KING WITH SO MUCH POWER
TOLD DANIEL "YOU CAN'T PRAY"
NO, DANIEL HE DID NOT LISTEN
SO THE KING PUT HIM AWAY
AND HE THREW HIM IN A LIONS DEN
WHERE HE FELL DOWN ON HIS KNEES
INTO THE POWER POSITION, GOD SET HIM FREE
(REPEAT CHORUS)

I used to sing this song at my Church, it helped Christians through some hard times and brought numerous lost souls to Christ. I do not have a link with me singing it, but my good friend Richard Propps does a wonderful job. The name of the band is "BLUE STORM" and they were wonderful, they split up awhile ago which was a very sad day for the music world. I heard recently that the fiddle player, Steve Williams had past away due to heart problems. I actually run that site, but I have not been on it in years and probably don't remember the password anyhow. Well, let me know what you think. Hope you enjoy, and give your daughter a hug for me and tell her everything is going to be all right, thanks.

God Bless,

Thomas

http://www.myspace.com/richardpropps

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Hi,
I always love to hear happy stories from this awful disease. I am a mom of a 13yr old with AA3. She too had a golfball size tumor, hers was in her cerrebellum. She also went through the 35 radiation treatments and took temodar. Unfortunetly, neither worked. During those treatments the cancer was growing back. I too prayed for a miracle. I was not happy with the NO that we were seeing so I moved her to The Jimmy fund clinic/Pediatric Brain Tumor clinic. From that moment on I knew we were in the right place. My daughter was put on a totally different treatment plan and has had 4 clear MRIs since starting with that treatment. She has another MRI scheduled for Nov 11 and of course I am already a nervous wreck. Although I am nervous, I have put my trust in God that he will take care of her. Whether it is here on earth or in heaven, I know that he will take care of her.
Thank you for sharing

PBJ Austin
Posts: 346
Joined: Mar 2009

In March 2009 my sister (then 25 years old) was diagnosed with AA3. She was given 3-7 years to live but they said it could happen sooner. The treatment would only delay the inevitable and there would be no remission. She began radiation in April 2009, followed with chemo.

Well guess what? In less than a year she did go into remission. Her MRI in Feb 2010 was clear and every MRI since has been clear. As you stated so well, sometimes God has other plans.

PS. Hi momsworld, great pic. Your little girl is beautiful!!

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Thank you, I think she is beautiful too. When I saw your post I felt a calming comfort. Weird how seeing a name can do that. What I really love about this sight is seeing the same people on here for years. Such a good sign. God is here and he is with all of us.

PBJ Austin
Posts: 346
Joined: Mar 2009

I feel inspired beyond words by you and your little girl. Cancer is one of the worst monsters to stalk this world and it preys upon the most innocent people. I am in awe of a mother and daughter who stood up to this monster and beat it down together. This gives hope to all of us.

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

My story is similar to yours in that I also have AA3. My story is below:

In 2009 I started having severe headaches. I first noticed what looked like Kaleidoscope shapes in my right eye, and shortly after they would stop I would get nauseous and immediately get a severe headache. This happened again a few days later, so my Husband called our Eye Dr. because it was time for both of us new contacts. They got us in that day, and the Eye Dr. stated she felt I was having Ocular Migraines, I got a new RX for contacts as well as glasses, and we were on our way. Not even a week later I was sick again with a migraine and I went to my Regular Physician who was also a Physician that I had worked in his office over 7 years before I changed jobs. So he knows me personally, and he checked all my reflexes, etc and stated he felt they were Migraines as well; however he gave me a medicine for migraines to take as soon as I started seeing the spots so that it may help reduce the migraine pain when it came on. Then again not even a week later I'm sick and have another headache, and this time my neck is killing me as well and feels knotted up. I again make an appointment with my Personal Dr., and he examines my neck and states that I am having muscle spasms in my neck as well as Stress Migraines. He gave me meds to help with the neck pain, but I am not good on meds, and I had to work, so I only took them at night so it was not really helping that week. I took the next week off work to take the meds and relax per my Husband's instructions :) That week off I was sick 3 of the 7 days. I decided on the Thursday of that week I was scheduled off work that I was going to just go sit at the ER to let them do some kind of test or something because I knew something more had to be going on. That Thursday I was dressed and ready to go then said "I will sit there all day and they may not do anything" So I decided to call my Personal Dr. again, and ask him if he would just schedule me some tests. They office told me he would be out till Tuesday, but they would leave him a message. So I was waiting till Tuesday now. I went back to work the next week, and every time I would stand up I felt I would pass out. Well as fate had it, Monday night my 2 year old woke up crying so I went and laid in her bed to get her back to sleep at about 3 AM. As I laid there with my arm on her getting her back to sleep I felt the worst pain in the front left side of my head. I honestly thought I was having a Brain Aneurysm, and was wondering if I should get my Husband. It eventually eased and made me feel a little less worried about aneurysm. By the time it was time to get up and get dressed; I was nauseous and could not force myself to get dressed for work. My husband said we are going to ER. He took our baby to Pre-School, and came right back and took me to the ER. This was October 20th, 2009. They got me back real quick for an ER, and had me having a CT within like 30 minutes, however ER Dr. said he just wanted to do that since no one else had, but he felt it was just Bilateral Migraines and we would be on our way soon. (Notice this is the third different migraine I have heard in the past couple weeks.) Well within maybe 30 minutes he comes in and says they see something in my left frontal lobe right in the front and did not look to be doing anything but lying right on top of the brain. Not entwined or anything. But that they are not sure what it is. It could be anything from an Infection to a mass. He also stated that there was quite a bit of swelling on my brain as well. He told us they will be coming to get me for an MRI and that they will know more then. About 30 minutes later they have me in MRI, and take me back to ER. No time later he comes in stating there is definitely something there that looks like a mass, and they would like to send me on over to there main facility downtown who has the Neuron Dept. I was admitted to the Main Facility, and they started Steroids immediately to reduce the swelling on the Brain. At first they were talking surgery by the end of the week, however after no headaches at all once Steroid started they released me the second day to continue the steroid to reduce as much swelling for the operation to go more successfully. The did the surgery October 29th, 2009, and when my wonderful surgeon come out to inform my Husband, and Family (I had 49 people in surgery waiting), he stated he felt after looking at it under the microscope it was maybe a Stage 1 or 1.5 tumor. It had a cyst on the front and back of it, and he removed all three due to cyst was made out of same tissue, but they were all just on top of the brain. He stated the tumor was the size of an egg. He stated the final reports would take a few days but he felt confident he got it all, and that it was one that may never grow back and if it did it could take my lifetime to. The MRI the morning after surgery shows he got it all! I was in ICU 2 days and in a regular room 2 days and was released to go home. We went to my follow up on November 11th, 2009 (two days before my 33rd birthday), and the final report states it is Stage III. The surgeon told us he is sending me to UAB in Birmingham, AL within the next two weeks for a second opinion as well as to get a treatment plan together. He stated he was still hopeful they will say it is only a Stage 2 or even the initial thought of Stage 1 or 1.5. At UAB to get the final diagnosis and treatment plan they stated in fact it was a Stage III, and not a Stage 1 or 2 like the surgeon was hoping. I went to UAB and they suggested that I do 6 weeks of radiation and during the 6 weeks of radiation I had to do a low dose of chemo called Temodar every day for the 6 weeks. Before the radiation began, and only a few days after I got back from UAB, I started having seizures. UAB started tapering me off of my steroids, and they tapered me off too quickly which is what we feel caused the seizures to begin. I had over 20 seizures everyday for 6 days. When they finally increased the steroids to where they had it, the seizures went away. Praise God I have not had anymore seizures since then, and I no longer have to take Keppra to prevent seizures. The radiation made me really tired and it also made me lose my hair in a couple of spots. My hair has grown back, however the area that had the direct radiation is still basically bald with thin almost nonexistent hairs. I just part my hair to the other side, and you cannot even tell. Hair is not more precious than life!! I ended the radiation at the beginning of 2010, and once I was through with the radiation, I had to take the Chemo 5/28 days for a year, and they more than tripled the dosage. If I started the chemo on a Monday took it for 5 days, I would not be able to get out of the bed for 7 days. This was the worst part of the cancer treatment for me. It is not the same for everyone; however it was really rough on me. The Dr’s will give you meds to help cope with the nausea, and I was even given Marinol, which is pill form Marijuana. I did not like it and actually just flushed those a while ago. My chemo ended in 01/2011, so I have been off of it for almost a year.
I have to go to UAB every 3 months for follow ups, but by the Grace of God there has been no reoccurrence. There is a small cyst that has shown back up, and they found it back in 2010, but it has not grown at all, and the tumor site is stable and healing. I just had my last follow up 10/19/11, and all was as good as or if not better than the scan before! Remission for two years on 10/29/11!! Praise God!!!

I also had a song that came to mind while I was sick. It is "Lord Prepare Me, To Be A Sanctuary, Pure and Holy, Tried and True, and with Thanksgiving, I'll be a LIVING, Sanctuary, For You!” I also have given my testimony at my church, and it is on YouTube as well. Not sure of the link on YouTube, but if I find it I will put it on here. I am really glad you are doing well, and I know we are here for the people who are currently fighting this battle to lend encouragement! There is not an expiration date on our lives that can be set by any Dr. Our fate is in the hands of the Man above, and everyday I give thanks to God for allowing me another day!!

kmlissette7
Posts: 1
Joined: Nov 2012

Hi, Thomas
I would like to know how you are doing? Hope to hear from you soon. God Bless You.

Blueeyedangelskeeper
Posts: 1
Joined: Nov 2012

I loved reading your post. My younger sister was diagnosed with this inopperable tumor 2 months after her 21st birthday. When she went to the hospital for a headache she found it to be cancer. It starts about an inch over her eyebrow an goes behind her ear. They said it was calcified into her brain. They gave her 3 to 5 years. It's so hard to understand something like this. My sisters not even lived a life yet and now fighting for hers. She's a mother of 3 small girls who are too young to understand death. About 6 months ago she suffered her first seizure while bathing her 3 year old, easily said frightening for them both, luckily her mother in law was home with her. Im scared! All the doctors keep saying is she's a fighter and there's no change. But I can't grasp the concept that my sister may only be here so much longer. I'm trying to be positive for her but I feel I'm not I don't wanna lose her. I know I'm rambling but I wanted u to know you've given me hope that I can keep my sister. Thank you, Ashley

Stacey Mac
Posts: 1
Joined: Nov 2012

Dear Thomas

I have found your story encouraging. My mom has
been diagnosed with a grade 3 anaplastic astrocytoma
She has been under going radio therapy but only had 5
Sessions before being struck down with phneumonia and
Blood poisoning. She is currently in hospital on a ventilator.
It has been so hard for me and my family. My moms brain tomour
Is in operable and not curable but it is in her right temporal lobe. Did
You have surgery to remove any of the tumour before your radio therapy
Treatment?

Stacey x

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