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Grade 3, an anaplastic astrocytoma

JanetLMcCoy
Posts: 6
Joined: May 2008

My nephew-in-law was diagnosed with an anaplastic astrocytoma, Grade 3, last December. He had surgery at MD Anderson Cancer Center, recovery, rehab (very little was required) and 6 weeks of radiation

He's recovered great, is back at work and driving.

I'm hoping to find someone who has beaten the doctor's timeline diagnosis of 3-5 years. My nephew-in-law is 30 years old and has a wife (my niece) and three-year-old son.

Their very strong Christian faith, great doctors and wonderful family and church family have gotten them through the last 11 months.

Please respond if you are willing to talk about your experiences.

Thank you.

ChristyM
Posts: 38
Joined: Jun 2008

I do not take the prognosis information to heart. I never asked about it actually! I read enough on the internet, but I know that most of those compiled statistics are from older studies, that dont necessarily tabulate in all of what is available for treatment now. And remember there are no guarantees in life, for example, that since statistics say it can come back DOESNT mean that it will. I have read stories from people on the national brain tumor foundation who have battled GBM and have made it many years SO FAR. Still alive and kickin!
I was diagnosed with an anaplastic astrocytoma in May of this year.

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

christy i was diagnosed with AA3 in Nov 2010. ure statements r very true. would like to talk to u. Imma still alive and kickin also. Got to, my lil girl depends on me.

BuzzyBee1208
Posts: 6
Joined: Mar 2011

Keep up the fight.

papa joe
Posts: 2
Joined: Jan 2012

Hi Christy,
My dad was also diagnosed with AA3 in july 2010. Of course his prognosis was also poor but after surgery ,radiation and temodar he is cancer free. My question to is that his doctor still have him on monthly temodar it seems be causing several side effects. Do you take temodar also?
Thanks,
Sandi

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

Hi:

My 18 year old daughter was diagnosed with AA3 in February 2011. We are still finishing her 12 month treatment plan. It includes Avastin, Irinetecan and Temodar. She also had brain surgery and radiation. I am curious how long they plan on keeping him on Temodar? Where does he get treatment? We are thinking of going to MD Anderson for a second opinion, well a back up plan in th event of a reoccurrence. Right now, her MRI's are stable. I have read other posts of other people taking Temodar like a maintenance drug. I send you God's blessings!

Edna

AA3 parent's picture
AA3 parent
Posts: 3
Joined: Mar 2013

Hi, hope you are doing great.My daughter was diagnoised with AA3 on 3/21/13. She had a seizure at school while practing drill. Then she had surgery. The doctor was able to remove 80% and now has to start Kemo and radiation. My daughter is also 17 years old. We are thinking of not doing the standard Kemo using Tamexolide and going with the experimental Bevacizumab or Vorinostat. I just saw your profile and was wondering how things are. Tyring to get over the tears.

Dad

Jemntheholograms
Posts: 1
Joined: Apr 2013

Hi there! I specifically created an account so I could write this to you.  My mother was diagnosed at age 36...She had been acting strangely for a few days- then had a seizure at work.  We were absolutely devastated.  I was barely 16 at the time so she hid from me how long they "gave" her- a whopping 2-3 years max. She had surgery. She did both chemo and radiation.  It was tough on her - she was sick a lot and upset a bit about her hair...but She kept her attitude beyond positive.  As a family we kept her laughing hysterically every chance we got And absolutely refused to ever let her be upset about it. 

 

She turns 49 this coming September.  They cant find a trace of the cancer. She's happy. She's healthy. And you wouldn't know what she's been through unless you asked.  I'm beyond proud of her.  

I wanted to let you know that it's not a sentence. It's difficult to watch and breaks your heart to know they're suffering.  But keep a positive attitude.  The more "normal" we made things seem the better she felt.  Laughter really helped her accept it and pull through on the difficult days. 

 

(I apologize if this comes put strangely.  I'm onm phone)

maggie65
Posts: 4
Joined: Feb 2013

My husband was diagnose with Anaplastic Astrocytoma Grade 3 this past year end of October 2012,  its been a painful and difficult journey from all the regiments and causing affects my husband is positive he will beat the odds first and most I like to say thank you for sharing such inspiring story of your mom and her survival my husband is a strong person at only 45 years old I see his strength and will his going on 46 this upcoming June this year I look forward to celebrate his birthday and survival as well and as I keep those struggling with this illness of brain tumor in prayers I also ask you and those out there who struggle this fate and read our story to pray for him as well. God bless and keep the faith thank you again for giving us hope.

AA3 parent's picture
AA3 parent
Posts: 3
Joined: Mar 2013

I read about your mother what an inspirational story. I am so happy to hear that she will be turning 49. This is so new to my family and myself. We are trying to educate ourselves everyday. I want to thank all the wonderful people at Oaklands Childrens Hospital for taking care of my daughter and UC Davis Cancer center where she is at her 9th day of Chemo and radiation. She is receiving arm 1 on the clinical trial which includes Vorinostat for Chemo 2 hours before radiation. She is doing well so far except for the smell of radiation (she cant stand it) she puts a few dabs of pepperment extract on her nose and in her mouth just before. We have put together a team for Relay for Life and we are calling it Team Savana. Her younger sister is  the team captain.

Have a great day, Dennis

HAILEYSMOM
Posts: 5
Joined: Jul 2012

Hi Dennis!

I think my daughter is in the same clinical trial arm as your girl.  Hailey took Vorinostat before each of her radiation treatments also.  She flew thru that with no problems, but she too complained about the radiation smell.  The tumor she had was an Anaplastic Astrocytoma in her left frontal lobe.  It was found by accident....she was playing high school basketball (15yrs old at the time) and we took her to the ER for a concussion check.  Her bump on the head led us down this road.  The neurosurg and neuro dept at Primary Children's Hospital in Salt Lake have been very confident of a complete excision, but still lots of treatments to try and keep it at bay.  She had hair loss from the radiation, but it is coming back in.  Now, she is on the second part of the trial.....Temodar and Avastin.  28 day cycles, days 1-5 Temodar, days 1 and 15 Avastin.  The Avastin has been a breeze....no problems at all.  The Temodar kicks her butt, but we have found Ativan along with the Zolfran and Emend helps.  She will finish up this phase in August, right before the start of her junior year of school.  I, too, love hearing about these long term survivors.  I seem to need to hear of at least one of these survivors everyday to keep us chugging along.  

AA3 parent's picture
AA3 parent
Posts: 3
Joined: Mar 2013

HI This is Savana's mom. Dennis and I are both on here for support. It sounds like Savana and Hailey have the same thing both on the left frontal lobe. The surgeon was not able to remove all of the tumor there was a few arms that needs to get treated. As I understand the arm we both have been chosen for is very rare. She is on Zolfran as well and does help her too. Savana is still feeling pretty good she gets sick sometimes in the mornings. She is very head strong and tells us all the time she has got this. She is going to the junior prom on Saturday with a nice boy, we are all very excited for that. Also, she made the drill team for the second year, which is the high school dance team that perfom at all the sporting events  I was worried that she was working her body too hard but at the same time I did not want her to miss out on the opportunity. Dennis mentioned to Savana about maybe Hailey and Savana texting each other since they are the ones actually physically, mentally, and emotionally going through this. If that is something you think your daughter would be interested in please let me know. I can send you my email address with Savana's #.

Debbie and Dennis

ChristyM
Posts: 38
Joined: Jun 2008

Sorry I do not get on here very often anymore...out busy living life! I have my 4 year MRI in May, but all my scans have looked good and I am no longer taking preventative chemo....my husband and I want to have a child and getting the chemo out of your body and for everything to return to normal is a long path.
I have taken my fortune and faith in God to go back to leading as normal of a life as possible-I will always be there for those who need someone to talk to, and to help them have the same confidence I have to not let cancer take over my life....we never know what tomorrow will bring and I choose to live for today.
Right after my diagnosis it was very difficult to deal with everything, this board helped me so much......not to not fall into the trap that cancer often lays down for us--depression, no appetite and being scared as hell....talking with people who you can relate to is key in having faith in whatever treatment decisions you make.
If anyone ever wants to talk, PLEASE feel free to send me an email--csnelling1@neb.rr.com
I will always be here for everyone!!

Christy

Candice T
Posts: 3
Joined: Aug 2011

I think that is the best way of looking at it. I asked my doctor 8 years ago what my chances were and he said, "Candice, grade three Astrocytoma...not good", and I felt a little voice inside my soul from the Lord tell me "You are going to be ok. You are not a statistic". You keep your head up and trust in Jesus. He can bring you through this just like He did me. There is ALWAYS hope when we have faith! I will pray for you!

BuzzyBee1208
Posts: 6
Joined: Mar 2011

kicked him out of my room and I told him that was not enough time. Doc 2 gave me a year. My current doctor says I am doing 99% better than most of his patients. God Is Good. 3 yrs and counting.. astrocytome grade 3.

I have been told -researched a little that this type of cancer: hereditary and less than 3% are woman under 50. Anybody in my boat? Lets chat share info

lauralee67
Posts: 2
Joined: Dec 2011

hi my name is Laura i do not have cancer but my husband does we live in Canada back in 2007 my husband was diagnosed with stage 3 tumour which he was told was rare as it was growing out from the brain stem he had surgery which removed about 90% then 6mnths of radiation and almost 2 yrs of temedol.he stopped the temedol and went back to work his last MRI which was in Dec 2011showed a two cm growth know were waiting for word from the surgeon. My husband was told 5 yrs but he is not a statistic we will beat this one way or another were thinking maybe something more natural this time

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

Hi Buzy Bee:

My 18 year old daughter was diagnosed in Feb. 2011, she was onlhy 17 then. I feel just like Julia (I Promise) wrote earlier - just sick today from the thought of my daughter's prognosis. She had brain surgery, they got 85-90%, six weeks of radiation with Temodar and now we are doing a year of chemo. The chemo is Irinetecan, Avastin and the last infusion has Temodar.
Today on the morning news, they had a 17 year old girl who had a baby and then died from brain cancer. I was still drinking my coffee when I heard that. I have faith. Somedays, I KNOW that God has a plan for my daughter and it is all good. Other days, I know he has a plan, but I am not certain what that is. She is struggling through the chemo. She has a speech impairment from the tumor (left frontal lobe). I am going to fight like the biggest Mama bear on this planet. I claim new health on her every night. I am a praying warrior and I know that God is good. I had not heard that this was hereiditary, did you?
I don't know how she got this. This Spring, we are going to find a new neuro-oncologist because our current one is not working out for us. We need someone to champion her fight. We are going to look at MD Anderson and UCLA San Francisco unless someone knows a better hospital. I wish you the best and God Bless. Edna

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cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Edna.

I think I saw that same news story on Facebook...the girl's name was Jenni Lake. Here's the FB link to her page, jenni's journey:http://www.facebook.com/jennis.journey. It was a heartbreaker of a story. What incredible unselfishness. It made me feel sick to my stomach and started me on a crying jag that I really haven't totally gotten over.

The doctors that we have seen have all said that brain cancer is not believed to be hereditary. I don't know if they meant just David's tumor type: oligodendroglioma. I think they meant all primary brain tumors are not hereditary. We don't have any history of anyone in our family ever having any form of any cancer. Not one relative. And we have a huge family. The biggest health concerns in our family have been heart trouble, high blood pressure, strokes, diabetes, those kinds of things.

I am glad that you are going to find a neuro-oncologist that will fight harder for your daughter. I believe in being proactive and not settling for the nearest doctor or for a doctor that isn't doing what you want. We got our third opinion from UCSF (in 2009 when David was first diagnosed) and I really liked them. They were our second choice after OHSU. Back then, I had misgivings about having a doctor and his team treating David from a distance, but after our experience with NIH in Maryland, I discovered that it is possible to have great care from a team that isn't in your back yard. We ended up staying with OHSU partly because we wanted to participate in the BBBD clinical if David had a recurrence. That didn't work out the way we had planned, though.

About the BBBD..... I believe that David had issues with the treatment because his tumor load is so great now. And I blame the amount of tumor that he has on his insurance company. We lost valuable, irreplaceable time arguing with them about covering the BBBD clinical. When we were denied treatment by the insurance company, we went to NIH in Maryland for treatment and it didn't help. So from May to Nov. David's tumors were virtually unchecked because he didn't receive any effective treatment. After all that hassle, arguing, heartbreak, and pleading, he finally got approved for the BBBD but now he can't handle the BBBD. His tumors are taking up too much room in his head, and he can't tolerate any swelling, and the BBBD causes some swelling. I am heartsick, thinking that the delay in getting treatment for David could cost him the last few years of his life. He is fighting back from the terrible time he had with the last BBBD treatment but it hasn't been easy. He is nauseated, he has really bad bloody noses, he has blood in his stool, he has headaches, his bones and joints ache really bad, and he feels lousy in general. He doesn't want company, he doesn't want to go anywhere, he doesn't want to watch the Ducks game tomorrow with his friends....he's just worn out and he's lost most of his hope. I hate it for him. Yet he doesn't complain and he is always so kind and caring towards me...thanking me for the meals I make, taking the trash out for me, giving me hugs and telling me that he loves and appreciates me.

The doctors tried to taper off on the steroids but I could tell that David was not handling it well. His eyes and his face got puffy, and not puffy like he gets from steroids. It looked more like fluid retention. His eyes were really bleary and he seemed out of it. I noticed that he wasn't talking very much either. So we increased the steroids again. He says he feels a little better now.

New Years was really hard for us. Looking back on 2011 is so painful to me, and I am afraid of what 2012 holds for us. David and I just stayed home by ourselves all night. My husband works graveyards, so he wasn't home. David and I went to bed early but I ended up calling my older son, Dallas (David's brother) and we cried together on the phone. I felt guilty for spreading around my misery, but I rarely talk about David to Dallas. Dallas deals with David's situation by using the ostrich method. You know, burying his head in the sand. I just usually let him, but not last night.

I am going to try to work hard at regaining some measure of hope. I don't know exactly how to go about that. It would be wonderful if our next MRI showed some improvement. I will start looking for some good things and talk about those things and thank God for them. I think I've allowed myself to become too negative. I should have been more diligent about protecting and nurturing hope for David's situation.

I'm sorry that I have rambled on. Writing my thoughts like this helps me sort through my emotions. I think about you and your daughter, and about Julia and Kat, and momsworld and her daughter, and 4theloveofmysis, and Chris_W, and Raani01, and connsteele and her son David, and Girl2010, and kmponder, and Beckymarie and sonfollower, and cdolive4, and Michelle (chicken) and so many more people from this site. I pray for all of you every night. May God bless you all and bring peace and healing to you and to your loved ones.

Love and blessings,
Cindy in Salem, OR

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chicken2799
Posts: 105
Joined: Nov 2009

You were mentioning Brain Cancer being hereditary. My Mom passed away in 1984 due to a Stage 4 Glioblastoma. When she was diagnosed they gave her 6 months to live, and she lived for 6 years. I believe she held on to see me and my brother get to an age that we knew her, and understood that she was sick. I don't think she wanted to leave us without us understanding that she loved us and wished she could be here for us! I was 9 days shy of turning 8, and my brother was 11 when she passed away. When I went to UAB (Birmingham) for my 1st appointment, I let my NO know this, and we asked could it be hereditary. He said that there is no evidence that it is, but that the room he came out of before he came into my room had a Mother who was just diagnosed. Her son had died of a Brain Tumor not even two weeks before she was diagnosed. I spoke with that woman while we were waiting on our MRI's, and she said that she had taken care of her grown son through this, and now she was going through the same thing. My Brother and I participated in a research thing they were doing at UAB, but never heard anything from it. I will ask them when I go for my follow up on the 18th. The NO said he still does not feel it is hereditary, but that going from one room to the next had him questioning things. I hope and pray every day that it is not hereditary. I will be sure to let you know what they say after my follow up on if they think it could be or not!

Always in my prayers!

connsteele
Posts: 232
Joined: May 2011

Reading your post, I'm wondering too if brain tumors are hereditary. Our son (age 34, two brain tumor dxs: first one was a medulloblastoma, diagnosed in 1985 at 8 years old; then in April 2011, diagnosed with AA3 at age 34.) His paternal grandfather died of a brain tumor in 1968. This was before I had met my husband but from what his mom has told me, the surgeon just opened his dad up, saw that it was bad, and closed him back up. No treatment or anything. Of course, back then, I don't know how much they were able to treat brain tumors. His mom doesn't even know what kind it was. Maybe today, he could have had treatment and lived longer than 9 months.

I wonder if instead of being hereditary, it's some environmental factor(s) that family members were all exposed to... drinking the same water or living close to a toxic waste site or radiation exposure from some unknown source?

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

You know my Brother and I were talking, and there are different types of chemical, concrete, etc. plants around our area. They had us send in Water Samples from our homes. I can name 6 people that I know including myself and my Mom that was diagnosed with a Brain Tumor in our area. Really makes you wonder... They did this research back in 2009 when I was diagnosed, and I really never thought of it till I read the posts about it being hereditary. I am definitely going to ask them when I go back.

Michelle
Mobile, Al

blackngray
Posts: 11
Joined: Mar 2011

I was diagnosed with a brain tumor in 2010, an AA3. Within the same month my neighbor was diagnosed with lung cancer. We went to radiation appts 15 minutes apart from each other, lost our hair at the same time. When Hurricane Ivan came through our city, his son built our homes back from the ground up and I often wonder if his son used poor products. Maybe "chinese dry wall"?? I don't know. Or is hereditary? My oncologist has said that brain cancer isn't hereditary, but cancer can run in the genes. Cancer is definitely on my mother's side of the family, not brain cancer though.
I'm not sure, but it's something interesting to think about and research.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

When we went to my sisters first appt. The doctor listed off some conditions that would make it hereditary. Which we didnt have.He said that the hereditary link were to those conditions. They said a blow to the head or expose to some chemicals, or it just happens they dont know why.

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

Hi Cindy Sue:

Thanks for sharing your journey. It does help to learn what others are doing and also just knowing that someone else really really understand our situations. Sarah had her MRI in December. Seattle left me a voice message saying it was good. But, later on the NO called and said they do have two spots they are watching, the same ones they have been watching. After I spoke with her, I did not feel like the MRI was good. She has thrown in the towel and we are not even done with the race. That is what has caused us to watch to search again. Our plan is to stay the course on the current treatmet but have future plans. Like you said be proactive.
My heart hurts for you and David when I read your posts. And sometimes I am full of fear - what does 2012 bring for all of us? 2011 was a doozey for us. My father-in-law passed away in December. My first born was all set to graduate with honors was diagnosed with Brain Cancer on Februay 4, 2011. The worst day of my life. I will never get over that night.
The one good thing is my faith has grown tremendously this year. I have faith!
I know what you mean about the ostrich. My ostrich is Julia my middle daughter. She is 16. She is running so far and so fast from this whole situation. But - it is quite painful for Sarah because she missed her sister's company. I am thinking that we should do MD Anderson. Have you heard anything about them?
We say prayers every night for everyone suffering from brain cancer, all cancers. I DO believe 2012 will be better. I know that God has something good planned for all of us. I am claiming it Cindy Sue. Happy New Year. I am happy that David improved so much.
Edna

Eng
Posts: 11
Joined: Jul 2011

Please leave me your your personal email address. We tried all of these places....

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

Hi:
I left mine earlier. edna@camai.com. Thanks.

Alutiiq Mom/Edna

Jeannie20
Posts: 5
Joined: May 2011

Hi Edna,

My boyfriend also has a Grade 3 Anaplastic Astrocytoma diagnosed September of 2010. He has done Gamma Knife, radiation, and took Temodar and is still taking Avastin. We live in Miami and this is where he does all his treatments (UM/Sylvester). We have traveled to MD Anderson in Houston and Washington University in St. Louis. We had a terrible experience at MD Anderson. We made all those travel expenses for them to tell him 3-5 years and there is nothing else we have besides what you are doing. Very disappointing. So personally I would not go to MD Anderson for a 2nd opinion.

My boyfriend is doing really well. The tumor is stable and had not grown since. Its been about a year and a half now. Back in November he did a PET Scan which the insurance wanted to deny and it came back cancer free. That is amazing! All I have to say is have FAITH! God does do miracles if you just believe.

Stay positive and fight the fight. It seems like you are positive.

God bless you and your daughter.

mykos
Posts: 1
Joined: Apr 2011

i'm going on 4 years plus and my mri's are totally clean. don't listen to any diagnosis just plan on being around like everyone else. i'm 43 and going strong -you got this

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

HI:

Thank you for keeping HOPE alive! We need to hear that on this website. God Bless you.

Edna

sonfollower
Posts: 26
Joined: Nov 2010

I am so encouraged to hear that you have made it over the 3 year mark. That is so awesome. I was dx 05*01*2011 with GBM grade 4, I am 47 years old and this is actually a hereditary cancer for me. I have Lynch Syndrome. I feel a little bit like a walking time bomb, just waiting for the next cancer to show its ugly head. I have had uterine cancer in 2010 and a small colon cancer at the beginning of 2011. All are part of the Lynch Syndrome.

My current doc did not give me a timeline, just said that this is a very aggressive cancer that is hard to stop.

I think that I am doing so good by the Grace of God alone. Right now I am on Avastin and Temodar. I try to walk every day. It is so good to get outside and do a little exercise.

Take care,
Lora

dklaisle
Posts: 3
Joined: Jan 2012

Yes it is possible to survive this. In the beginning I didnt believe it. Would like to chat with someone experiencing the same challenges

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

Hi;

Thanks for sharing your story and giving us hope. My daughter is finishing up her 12 months of chemo. We are in month 8. She had it in the left frontal lobe. Do you mind if I ask some questions? If you do mind, you don't need to answer - that is ok. But, I was wonder where your tumor was located? What treatment did you get? Where did you receive treatment? What are the challenges you speak of?
This a rough illness and road. My daughter is tolerating her treatment so far. Thank God. We are faithful believer. I send you God's blessing today.

Edna

munurse07
Posts: 9
Joined: Feb 2012

My doctors have not given me a time frame but I don't ask either because we are not statistics! I'm a 27 yr old female and plan to beat this and I'm glad to hear you're doing well. Hope and God are Great! What type of treatment did you have? I'm going to do the standard 6 weeks of radiation and temadar. Then the oral temadar for 5 days once a month for atleast 6 weeks. I'm nervous about the treatment side effects more than anything.

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

I also have Oli Grade III, my treatment facility Roger Maris Cancer Center, has seen people with his type of cancer 18 plus years out. Do you have the 1p19q deletions of even just part of the deletions? Also, modern medicine is always changing, doctors need to keep up on the latest treatment plans. Keep searching until you find what you are looking for in treatment. Only 2 percent have this type cancer, and more prominent in males under the age of 30. Treatment relys heavily on deletions, age, removal of tumor, I had 99% removed in September 2011, have been through 6 weeks of Radiation, with Temodar during
radiation. Only problem I had was hairloss, I now sport a Mohawk, but is growing back, slowly. I will remain on Temodor ( high dose) 5 days on 28 days of for 6 months. My MRI
right out of surgery showed no tumor present. 1 month after treatment still no tumor
present- going in for next MRI April- everything is going great. Back to my life, work,
friends, ice fishing, and hanging out enjoying life. I you have more questions- please
ask, I have been through it all.

Stay strong!

Benjamin

Little Tad
Posts: 1
Joined: Jun 2012

In 1997, I was diagnosed as having a spinal tumor between my shoulder blades and inside my spinal cord. This came after a three hour MRI that was to find the source of the leg spasms that I had after sitting. The neurologist,in Clear Lake, who "found it" really reacted as if I needed to be panicking. He tried to set me up with a neurosurgeon friend of his, in Pasadena, TX. I, being an engineer, wanted to do some research. Through a series of referrals, I found a doctor, who operated at Methodist Hosp., who had removed over 200 of these. Mine was 3.5 cm in length and 1.5 cm in diameter. He said that he had removed a 5 cm tumor from a lady's back a few months earlier. I chose him to do the surgery. He took me off of the Decadron that I had been taking for 3 days - cold turkey - until just before the surgery. He was concerned with possible organ damage if I took it too long. The surgery was 7 hours long. He did it in two stages. He "carved" for 3 1/2 hours. Took a 30 minute break and then 3 more hours and sewed and stappled me up. Three days later, I walked out of the hospital. Two and a half weeks later, I drove my manual shift pickup back to work for half days. A week later, I flew my fiends Cessna 172. I initially had a follow up MRI at 6 months - no reappearance! Then after the second 6 months, we switched to once a year. There was no chemo or radiation. Two years ago we had an interesting discussion. My neurosurgeon asked if I knew what kind of tumor I had. I said I understood that it was an Anaplastic Astrocytoma (AA). He said it was. He had initially thought it was benign because of the shape on the MRI. The Pathologist report had identified the cells as AA. He said that these tumors normally form back up in 6 months. Mine never has. He told me that he was good but not that good. He said I was in the hand of God region. I told him that I was good with that. I was a bivocational minister and engineer with NASA. After NASA retirement I did additional studies and have become an ordained elder. The AA damaged my nerves. The lower 2/3rds of my body is damaged. I was required to relearn some things. Things that I used to do "automatically" I now have to consciously decide how to do. Getting up into pickups is strange to me. I have difficulty finding the accelerator pedal quickly. I don't follow cars as closely as I used to. I do most of the things that I want to (Fly a plane, Ride a motorcycle, drive a car, etc.) At 69, I am more limited by Arthritis than nerve damage. I no longer do follow ups.

Artlife2013's picture
Artlife2013
Posts: 1
Joined: Apr 2013

Hi i just wanted to see how you are doing?  My girlfriend was diagnosed with astrocytoma  grade 2 5 years ago and grade 3 AA a year ago. She had both surgeries and radiation and chemo. I'm terrified of the statistics. I need to start looking for a community of people who have dealt with this. 

njecab
Posts: 6
Joined: May 2013

hi,

I just want to share a link with u which i came across hope someone ll benefit from this:

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919998/

 

JanetLMcCoy
Posts: 6
Joined: May 2008

Thank you. You are so right.

narthur
Posts: 7
Joined: Aug 2008

Thank you Christy! I also agree! It's not a death sentence unless you think that way. You can go through life thinking that about everything... I choose not to live my life that way. I think a positive outlook on things goes a long way in every area of your life, especially cancer!

I'm 30yr old, single, no kids, was diagnosed in march of this year with anaplastic astrocytoma, grade III. My tumor was in my right frontal lobe. Had surgery,after surgery my left side didn't work(kinda like a stroke)inpatient and outpatient rehab,radiation/chemo, and now i'm on chemo. about to start my 3rd month out of 6. I haven't returned back to work or school. i want to but my energy is random and my profession is a high pace job (x-ray technologist)I'll get back there, soon enough!
Glad to hear your newphew in law is doing well! He'll be fine with many more years to live! :)

nrmbenz
Posts: 2
Joined: Oct 2009

My brother was diagnosed with an anaplastic oligoastrocytoma WHO Grade III two weeks ago. Intraoperatively they did not take it all as they were afraid of permanently damaging his motor cortex leaving him speechless. So tumor remains (they also thought it was a GBM Grade IV on cold path in surgery). Anyway - we have just seen the oncologist two days ago and now she says they have decided on whole brain radiation - which I do not understand as this is usually reserved for metastatic cancers - I was under the assumption that they would use fractionated focal radiation and Temodar (which he will start).
He is 43 and has 1 11 yr old son. Unfortunately he made his living talking and has slurred speech now.
Does anyone have experience with whole brain radiation in these cases? And how do you all feel after your chemo and radiation starts - I do not have any experience with Temodar - how well is it tolerated - what can I tell him to expect? All advice / information appreciated. Has anyone had to move forward and use self-directed tumor vaccines made from their own tumor? They have held his tissue for this purpose.
Thanks - I am caring for him for the next 2 weeks from out of state - do most of you resume normal life and jobs during chemo/XRT?

J.S.
Posts: 1
Joined: Jan 2012

I got missdiognosed in 2000 I was 30 I was sent to a specalist with my scans,,I forgot to say I was having seizures.when I went to this so called specialist he tells me he's got good news n bad news.He says the good news it's an aracnoid sist the bad news is we don't know what's cauasing the seizures.I tell him I boxed as an amateture he replieis that could be it.I asked what now more tests?He rtells me half the people your age that start having seizure out of the blu like you are go throught the rest of there life not knowing why they just controle it with meds.I looked at it like I always knew this was gonna happen to me some day partying like a rock star like i was.So i had to take 500mg of dilanton every day n 7 years later I find myself in prison for manufacturing marijuana.Long story short I get properly diagnosed had 2 surgeries the fisrt went fine but they only got 30% of it a week later they went in and got the rest after that I wound up paralized couldn't even speek but all the scans shwed no sing of tumor after 6 week of radiation+Temedor so I cntinude to take thr Temedor.At this point I though I had it beat only to find when I got out that there's no beating this type of cancer I have and every med. I take my body eventually become amune to.So after taking the Temedor all sort of diffenent ways i went on to intovenouse chemo what seems to work Evaston it's now 2012 n I haven't had a treatment in a good three monnths that's just me evston is working for I seem to hadnle all the meds. they through at me including the Temedor I never lost my hair or anything.

Saxon66
Posts: 1
Joined: Nov 2010

I had nearly the same thing.I am a 22 year old male. I had a anaplastic astrocytoma grade III in my front right lobe. They told me going into surgery they did not really expect my left side to function after surgery and there was a very high possibility of me not having any personality after surgery either.The surgery was done the day after a seizure that led to the University of Iowa hospital where the surgery was done. I have done great since surger That was August 28th of this year. I have problems with pain in my left him and it gets very sore. The chemo is in full swing and so is the radiation. I am very sorry to hear your left side has had problems. How are you doing now? I am just trying to get through the treatments and see where we go from here.

Girl2010
Posts: 26
Joined: Jan 2011

You have what my 19 year old brother has as well. He is in full swing with the radiation and chemo... he has problems with his right side, and his tumor is inoperable. Have you tried any clinical trials? We are currently searching options for that...

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

Hi:

I am just beginning a search for trials, were you successful in finding one?

goodboy
Posts: 2
Joined: Jun 2011

hi
my 6 year old son just completed treatment for anaplastic astrocytom grade 3. we joined a clinical trial since standard treatment (tamezolide) is not so promising. Thank G-d we just finished and his last MRI came back clear. Dr. Dunkel at memorial Sloan Kettering is conducting this study- I'm not sure if you fit the criteria for the study- or if the study is still 'open' but worthwhile to look into. I keep reading about people who had AA- but they were all adults- if anyone has information about a young child I would love to connect with them.

good luck

thatisme
Posts: 1
Joined: Aug 2011

Can you tell me what type of clinical trial was done? I know a young boy that is going through a clinical trial and I would love to hear a success story if it's the same one. What did you son have done?

Rodgers313
Posts: 1
Joined: Aug 2011

Want to connect with goodboy regarding dunkel trial

Concerned cousin
Posts: 1
Joined: Nov 2011

Dear Goodboy,

My 6 year old cousin has ananplastic astrocytoma, grade 3 with grade 4 characteristics. It would be so helpful if you could speak directly with the mom. Is that possible? They are coming to NYC on Wednesday and slated to see Dr Garvin at Columbia Prebyterian. I read your comment and felt hopeful that Dr Dunkel at Sloan Kettering might also be helpful. Any more advice? The mom is distraught. I don't know how to comfort her. Please let me know if you feel comfortable speaking with her.

Concerned Cousin :-(

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

Hi:

My 17 year old daughter has anaplastic astrocytoma and had a tumor on left frontal lobe. She had surgery, and radiation and chemo. Now we are in the maintenance phase of the chemo, which is for a full year. This treatment is make her so sick she can hardly function.

What kind of treatment did you have and how are you doing?

Thanks for sharing.

From: A concerned Mom

diamond24
Posts: 5
Joined: Aug 2011

Hi,
My 17 year old son was also diagnosed with A astrocytoma III. It was a small tumor by his
thalamus. It was removed by an amazing surgeon. He had surgery in May, Proton radiation therapy for 6 weeks and is currently on his 3rd round of Temodar. (5 days per month, after taking it with radiation for 42 days.) His tumor was very difficult to diagnose and they are now certain it is from previous radiation he has had from two other tumors at age 5 and again at age 12. Hi MRI is clean at this time and he has no deficits at all. He is doing well on the temodar(fatigue, nauseated but controlled) Blood counts a little low but not bad. What is the dose of Temodar(if that is the chemo) my son takes 360mg per day x 5. Do you give her anti nausea meds? My life has been devoted to taking care of my son with Cancer and he truly is a walking miracle. He will continue with the chemo for about a year and have MRIs every two months for a while. Prayer, family and faith has helped us and I hope it can help you too.

My best to you and your daughter.

dd

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

Hi Dimond:
My daughter is doing better. We switch oncologists and that made a big difference. The new doc gives her a little decradon with the infusion and that seems to help the nausea.
Sarah is on the same plan for Temodar. She takes an infusion 2x a month and on the last infusion we take pills at home for five days. The temodar is 400mg. a day. The infusion is Avastin and Irinetecan.
Today, the doc said she wants to stop the Temodar because Sarah does not tolerate it well. We are very afraid to do that. We have had two good MRI's. We are supposed to follow this plan until next May, but now they want to stop the Temodar. What do you think? They think it makes her too sick and they cannot say for sure it works. They know the Temodar works inconjunctin with the radiation, but apparently no studies have been done on this part. Please let me know what your doctor says. Sarah has the Anaplastic Astrocytoma 3 too. God's blessing to you all.
Edna

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