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Astrocytoma Grade III-Survivor

Quilmes's picture
Quilmes
Posts: 7
Joined: Mar 2008

If any one needs help please let me know, I went through brain cancer and have lived. My calling is to help others survive also.

Jose

Haley75
Posts: 8
Joined: Aug 2011

I hope and pray that I'm as lucky as your husband I also have aa111 and I want to see my five fantastic kids grow up ... I'm finding it all very hard I've had surgery they removed 95% of it it was in the top right superficial .. I just want to get better x

ronefx
Posts: 11
Joined: Jan 2009

I posted in another thread, but I had a grade 3 astrocytoma tumor on the right frontal lobe. It was completely removed and have been cancer free as far as I know for 15 + years. I am looking to find other's stories of long term problems and issues they have had.

momfor2
Posts: 8
Joined: Apr 2009

Did you have any further treatment? My daughter has grade II astrocytoma left frontal lobe. The Dr. said he completely removed tumor and she needs no further treatment for now. She is having short term memory problems but not so bad that she cannot work.

momfor2
Posts: 8
Joined: Apr 2009

How are you doing today ronefx. Did you had any chemo or radiation. Glad to know you have remained cancer free for so many years.

ronefx
Posts: 11
Joined: Jan 2009

sorry, it took me so long to respond, I don't check here that often. I had 6 weeks of Radiation & 6 courses of chemo. I am still doing good, just get tired here & there, so I take a nap(which I enjoy anyways) but, that could be from everyday stress, I normally don't think about the fact I had cancer, cause it has been so long.

Haley75
Posts: 8
Joined: Aug 2011

I hope to be like you one day .. People like you give me so much hope x

dsteras
Posts: 8
Joined: Nov 2009

Wow I am so glad to see that you are 15 plus cancer free! my son is going through grade 3 astrocytoma tumor treatment now has had 3 recetions radiation and 2 chemo 1 bio drug now NIH would like to have him in a trial they thinck it has progressed and our dr's did a PET scan and showed no actived so we are so confused about letting them so more but I want my son to have the same wonderful result as you have can you shed some light on this

ronefx
Posts: 11
Joined: Jan 2009

.

ajd1234
Posts: 3
Joined: Apr 2009

Hi, my niece has AA, the doctors are not giving us a lot of time.
She was diagnosed 4 months ago , had radiation done, chemo. Please help if anyone has a child with non-operatable AA grade 3.
May G-d help all who are suffering with any illness. thank you, angela

‹ Childhood Medullablastoma Is No Treatment an option? ›

kempenl
Posts: 13
Joined: Jan 2005

Can you and all survivors please tell us what long-term effects you've had from chemo and radiation?
thank you so much.

janmiz
Posts: 2
Joined: Oct 2004

I am the mother of a 47 yr old daughter who had AA grade 3.She is 7 yrs.clean.she is going to have her MRI in may and every time I cross my fingers.I have tried to ask docs about the long term effects with no answers.I finally realized that they just don't know, as most people don't last long enough to do studies on them.I saw that my daughter didn't lose hair from the temedar but she lost hair from the radiation.large strip that didn't come back. she has gone to a doctors for tests and has short term memory loss ,fatigue,cognitive problems ,impulsivness, loss of common sense ,anxiety and some times depression.each year that she takes the tests it gets a little worse.I blame the radiation to her brain.I am sure that it has killed good cells as well as bad cells.she certainly is very frustrated.I feel it is getting worse little by little.

dsteras
Posts: 8
Joined: Nov 2009

my son was dig. with AAgrad 3 june 2008 and had 3 surg. radiation and chemo "His hair has not come back completely where the cyber knife was" now waiting for a trial to start at NIH hope that we can kick this as you have please any advice? frustrated is a under statment.

kishi
Posts: 3
Joined: Apr 2009

Hi
I have Grade 3 Astrocytoma and can take any help I can. Diagnosed in Dec.2005. Chemo and Radiation and now I am trembling. Hope all with cancer will someday be saved and be cancer free. I believe we cancer patients are suffering but never as much as those who love us and are looking at us everyday helpless wishing they could do anything to make us feel better.

sue Siwek
Posts: 281
Joined: Jun 2009

where are you going for treatment? the trembling may be short term. please go to a teaching hospital, it will have the latest treatments. yes as a caretaker we will do anything to save our loved ones, to save our loved one. go with it find the strength to do this. there is a place in your state or a near state that may extend you life. you have had a kick in the gut, get up or have and advocate get up and fight for you, it is not over.

momfor2
Posts: 8
Joined: Apr 2009

jose,

how are you doing now. Do you have yearly mri's. Did you have radiation or chemo

kishi
Posts: 3
Joined: Apr 2009

Hello My friend

I had radiation, chemo and regular MRI's on agenda. I am scared but trying to act or look tough for familly. Hope you are ok and cool.

Regards.

ChristyM
Posts: 38
Joined: Jun 2008

I had my surgery one year ago, May 11 2008--on Mothers day. I have since completed radiation and 6 months of chemo (beyond the daily I was taking during the radiation) I am going to be starting another 6 months here soon-My husband and I were working with a fertility doctor before we started again.
I have had some short term memory loss, but I find reading and relaxing (I think this is the most important thing) have helped me a lot. I also lost some hair from the radiation but none from the chemo.
My one year MRI is scheduled for next Monday, the 11th. I am looking forward to celebrating one year clear soon. (In other words, keep the positive attitude and statistics dont matter!)

PBJ Austin
Posts: 346
Joined: Mar 2009

I will be thinking of you on Monday and wishing you the best on your MRI.

Priash
Posts: 22
Joined: Apr 2009

Hello Christy:

How are you doing? Please keep us posted.

God Bless
Priash

ChristyM
Posts: 38
Joined: Jun 2008

I had my MRI and follow up with my surgeon today. There is no reoccurence! We will be moving my MRIs to every 6 months now.

PBJ Austin
Posts: 346
Joined: Mar 2009

I'm so happy for your MRI results, ChristyM!! You give me hope that my sister will have good results from her treatment also. Thank you for sharing your news.

PBJ Austin
Posts: 346
Joined: Mar 2009

Thank you for your stories. I rejoice every time I hear of a survivor of any cancer, especially AA. My sister has tumors in her left frontal lobe. One of her tumors was removed and the remaining 2 tumors are small. The tumor they removed was sent to a lab and AA was just diagnosed in March. At first we all imagined the worst but stories like yours do so much to lift my spirits.

She has just finished 6 weeks of radiation at MD Anderson. They will wait 3 weeks to do an MRI, then 2 years of chemo will begin. We had a big celebration for her radiation graduation. We are taking it all one day at a time and enjoying every day.

Thanks to all on this board, I love hearing from AA survivors.

Priash
Posts: 22
Joined: Apr 2009

New member. Same illness as yours.

God Bless
Priash

tmiles's picture
tmiles
Posts: 1
Joined: Jan 2008

I had a Grade 1 Astrocytoma removed from my front right hemisphere in 01/2004. I have had no reoccurrance per the last 5 MRI's. Thank God!
I am now 5 years clear, with guilt for having survived with nothing debilitating and I am starting to have emotional problems. Anger, depression, memory recall and I don't know how to cope with it much less how to correct the problem. I live in the Riverside, Ca. and I am looking for help with the psychological side of this. Does anyone out there have some information or contacts that can point me into the right direction?

Tony
LNTMILES@earthlink.net

Mannie
Posts: 51
Joined: Oct 2008

Tony,

I don't have any info or contacts but I wanted to at least reply to you. I don't think there's anything wrong with feeling guilty for surviving but I disagree that you had nothing debilitating. In my opinion, having any grade tumor is debilitating to a person's brain to cope with, especially when it's located in the area of the brain responsible for emotions/reasoning. My tumor was in my right frontal lobe and I can whip through emotions when I'm run down. I notice that my memory and my decision making capabilities are pathetic when I'm tired.

I actually think you're completely normal in your reaction to having a tumor, it's part of the grieving process we all have to go through. Except, online here, I don't hear that mentioned too much whereas I do hear this mentioned a lot in the "live" brain tumor support group I go to twice a month.

Take Care of Yourself Tony,
Mannie

Flav1234
Posts: 14
Joined: Jul 2011

Hi Tony

How are you doing now? I hope you found the help you needed... because I need help now. My fiance also had the same tumor (Right Front temporal lobe) and its been 12 years and he is so far gone with Anger, depression, social problems, fatigue ... hes now mimicking many mental disorders. I have been with him for alittle over a year and I am trying to find him help and failing miserably.

If you found a treatment facility please advise...

thanks
Tracy

joannterrell
Posts: 1
Joined: Jun 2009

My husband just got his brain tumor operated on by Dr. Allen Friedman at Duke. We were originally told it was a grade 1 or 2. Once they took out the tumor they said it was a grade 3 tumor. He is 45 years old and is in great shape. They took out a tumor the size of the orange but there is a small bit left they was in healthy tissue. They are going to talk with us tomorrow about the radiation and chemo.

kempenl
Posts: 13
Joined: Jan 2005

Hi -
was your tumor recently upgraded to AAO3? Here's a pretty good forum for info - hope you find it helpful.
http://www.cancercompass.com/message-board/cancers/brain-cancer/1,0,119,5.htm

lawslegal's picture
lawslegal
Posts: 39
Joined: Aug 2005

Hi,

Yes, Michael's tumor was a low grade 2 astrocytoma. I wish your sister a full recovery. Keep me posted if possible.

Thank you.
Laura

dsteras
Posts: 8
Joined: Nov 2009

my son is 18 stage 3 AA and has had 3 surg., radiation and chemo 3 kinds.One hosp. thinks the tumor is stable becuase the PET scan has no activity, NIH and Childerns hosp. thinks the tumor has progressed and want to try a exp. drug trial on him. Would you let them and what kind of chemo did you undergo?

angelkisses
Posts: 1
Joined: Dec 2009

My husband is 30 years old and has had brain cancer for 2 years and four months. its great and encouraging to see and hear about others who have been through this and are reaching out to help and support others. I would have loved to have known about this a couple years ago. My husband has had three tumors. He had surgery on the initial tumor and then radiation and temodar, then he had a radio steriotactic surgery aka gamma knife and more temodar, then when the temodar stopped working and he had all the radiation they felt like his brain could take in that area they gave him Avastin and Camptosar and has had no reocurrance for nine months.Praise God! He still has some occasional swelling and some memory loss. Thank you for posting and sharing you stories. It really helps me and others to see and hear survivors stories,God bless you all!

jeffballew
Posts: 9
Joined: Apr 2010

I thought I had this beat. I had a grade II astrocytoma removed in June of 06 and a second surgery in March 07 plus radiation. I just learned today that I have a regrowth and need another surgery. we do not know if it has gone up in grade. What's your story?

Gerard6
Posts: 6
Joined: Oct 2009

Dear Jeff you sound flustered and quite understandably so. Get a second opinion mate thats a MUST. Then take it from there. I had a Gr 3 (WHO) list NINE years ago now and they told me Id be lucky to last 12 months. Still here 9 years later. NO ONE KNOWS they only guess these things in relation survivol times. They dont really know. So be POSITIVE and strong. If you would like to email me please go ahead. Im only to happy to support you. OK. Good luck and Im praying for you, GER/

cbradley
Posts: 3
Joined: May 2010

Hi Gerard,
Nine years is fantastic. Iwould like to know more about your situation and treatment. What are your taking? I'm looking for anything to san=ve my 19 year old daughter's life. Grade 4 Astrocytoma.

Carol

AngelaMinas
Posts: 2
Joined: May 2010

Hello Quilmes, Hello Everyone,

I am from Asia. My fiance has been diagnosed of Grade 3 Astrocytoma last January 2009. He underwent operation February this year to remove the tumor. However, it was unsuccessful. It was the doctor's fault...

We are planning to go to the US (or to wherever country) to have his medication. Can you suggest a good hospital or doctor? Please recommend...

I would appreciate your replies....

I have been reading posts in this website, and finally decided to be a member. I see hope by reading your posts. I hope you could help us...by suggesting, or by prayers...

Thank you,

Angela

megansmom
Posts: 8
Joined: Nov 2009

University of Iowa, Dr Greenlee he did the surgery on our daugthers anaplastic astrocytoma, and did a fine job 99% or the original tumor removed. Also Duke university is doint significant amount of research on brain tumors.

ChristyM
Posts: 38
Joined: Jun 2008

I just had my 2 year MRI today, all clear, no sign of reoccurence!

cbradley
Posts: 3
Joined: May 2010

Hi Megan's Mom,

I'm Kathryn's Mom who was recently diagnosed with a grade 4 astrocytoma. If you have any encouraging words or know of any new treatments please send them to me. We are looking to save our daughter.

Carol

NCAA XC's picture
NCAA XC
Posts: 25
Joined: Nov 2009

Heres a vote for them,...They were a dream come true for me as my wife has done greatly through their care..

My vote...there are many wonderful places and this is the wonderful place we found...thank goodness!

ampalos
Posts: 1
Joined: Nov 2009

I am getting treated at the UCLA with Dr. Cloughesy. He is a well-known researcher and he works with a team that includes surgeons, radiologists, and other doctors. You can reach UCLA Neurooncology at (310) 825-5321. UCLA is known for being a very good hospital. However, I hear that UC San Francisco has even more succcess with brain tumors.

green_carbon07
Posts: 4
Joined: Aug 2010

Angela, not sure if you are still looking, but...

My 23 year old fiance was diagnosed with a Grade 3 Oligoastrocytoma in December 2008, and his operation was successful. Our surgeon was Dr. Wade Mueller at Froedtert Hospital in Milwaukee, WI, USA, which is associated with the Medical College of Wisconsin. Dr. Mueller did a fantastic job, as did the neuro-oncology and radiology staff. They continue to take good care of my fiance.

cbradley
Posts: 3
Joined: May 2010

Hi Jose,
I would like to know what kind of treatment you had and what kind of treatment you are still having? How long has it been since your diagnosis and how are you feeling today? I'm looking for anything to help save my daughters life. She is 19 and this is her second brain tumor. She had a medulloblastoma at 8 and now a grade 4 astrocytoma. Anything would help.
Carol

katelynn
Posts: 1
Joined: Jun 2010

Hi! I had a grade three astro ten years ago. Alive and fine as can be. I'm forty and people think I'm thirty. I am writing a book about my dating escapades since moving to NYC 18 months ago. This is the first post I've ever written. I don't define myself as a brain cancer survivor. I just hang out in life and have a good time. I did leave my accounting job and it is great to have ssdi and the brain cancer thing is how I get the money to live my dream, which i will do!!!! and I have a lot of allergies, etc. But I would say get the best treatment possible and ignore the situation after that. My family mostly ignored the fact that I was sick, which I resented, until a friend who has mental illness said that she noticed that the kids whose parents visited them in the psych wards never got better. I also had another astro survivor telling me I would definitely live and that turned out to be true. I also have a small brain aneurysm and hell if I understand that but it's supposed to be not that dangerous and fairly simple to fix if it ever grows. Just go by the assumption she'll survive and live a long, very normal, maybe even exciting life! That's what I'd tell anyone. Treatment is not fun. I had a pretty yucky experience but that made me a philosopher so I'm sure the same will be true for your daughter! Ha!

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

Hi There,
I am so happy to be reading more and more pos+ stories. My 12 year old daughter was diagnosed with anaplastic astrocytoma grade 1 and grade 3. The doctors say that it is rare to have such a mix of low and high grade cells through out the tumor. She has had 2 brain surgeries to remove the tumor which was located in her cerebellum. The surgeon said that the tumor looked like a low grade as it did not look much different than the normal brain tissue. After sending the tumor to 3 other hosp for 2nd, 3rd and 4th opinions they diagnosed her with AA3. I'm hoping that she has a better chance because of the mixed cells. Not as many high grade cells to kill. Unfortunetly they gave my daughter the same prognosis as everyone else. 35-40% chance of living 5 years. I refuse to believe that. She is doing so well. She just finished her first round of chemo and has 6 radiation treatments left. Then she will be on the higher dose of chemo for a year, 5 days on, 23 days off. The longer we can keep her tumor free the better the chances of a cure or a new drug that will help. We believe in the power of God and miracles do happen. I pray that God will heal my daughter. I'm just so happy to have read your story as even though I have faith, I also have my bad days and need something +pos. Thank You :)

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