CSN Login
Members Online: 4

18 yr old with Anaplastic Astrocytoma stage III

Girl2010
Posts: 26
Joined: Jan 2011

My 18 yr old brother was dx with Anaplastic Astrocytoma stage III at the end of November 2010. I have read everything and anything on the internet. Just want to hear what other people his age have gone through, being as the average person with this dx is 40. Any response would help. Thank you!

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Let me say that I am sorry to hear about your brother's diagnosis. Has your brother begun treatment?

My husband was diagnosed with AA at age 43, although his first brain tumor (a mixed germ cell tumor) was diagnosed at age 20. That one completely disappeared after chemo and radiation and he lived a very healthy life for 22 years. We do know that my husband's AA tumors (there were 3), were caused by the radiation he had for the first tumor in 1987. It's my understanding that most AA diagnoses are unknown causes (like most brain tumors), so my husband's symptoms (imbalance, vision issues) presented themselves more quickly than they might for others. When the symptoms presented themselves, knowing his history, we got medical attention very quickly.

Good news is that my husband, now 45, responded very well to his chemo (Temodar) and more radiation treatment. The tumors are gone. He is feeling very good, except he's lost significant vision due to radiation damage.

It's my belief tumors are not age discriminatory, but I do think they realize that certain types are more commonly seen in among certain age groups.

I hope you and your family will continue to educate yourself well with all the treatment options. There is great hope for your brother to recover and do well and live a long, healthy life. The road can be rocky at times, but always keep hope.

Kim

Girl2010
Posts: 26
Joined: Jan 2011

Wow he had three? My brother just has one large one. It is inoperable. His only symptom was a seizure, which he had never had before...but now has tons of. Is your husband still on chemo and getting radiation? It is awesome that he is doing so well!

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Yes, three - all inoperable. One was on the cerebellum and one on the brain stem, and one right off the brain stem. Fortunately, he's had no seizures. We are truly grateful for that. Even in the midst of a brain tumor(s) diagnosis, you do find yourself appreciative of all that it's not!

connsteele
Posts: 232
Joined: May 2011

We are in a similar situation. My son was diagnosed in 1985 with a medulloblastoma at age of 8 and had CNS radiation, both whole brain and spine, with a radiation boost to the cerebellum where the tumor was located. The radiation did cause some permanent long term effects, including mild learning disability, and hypo pituitary with growth hormone deficiency. Anyway, despite all this, he has managed well, went on to become independent, even moving out of state (Washington DC area), working for the government, going on 11 years now. Then seven weeks ago, he had a seizure. So, 26 years later, at the age of 34, he has been diagnosed with a stage III astrocytoma. He had surgery, but only enough tissue taken to get a diagnosis. He is scheduled to start the Temodar and radiation tomorrow. They too said that the previous radiation most likely caused this second cancer. I have a lot misgivings about the radiation and what further permanent negative effects it will have, including further cognitive decline and radiation necrosis, because it will be given in the same location (cerebellum)as the first time. The radiation doc seemed to be very cautious about further radiation damage and said he is consulting with various other institutions about what dosage to give. Was your husband's second round of radiation in the same area where he had the first? Has it caused any further permanent damage, that you can see? It is good to hear that he is doing well after this second bout.

connsteele
Posts: 232
Joined: May 2011

So glad to hear your husband had done so well. Our son has just been diagnosed with an Astrocytoma grade III, 26 years after being treated (chemo and whole brain radiation) for another brain tumor, a medulloblastoma.
Since the first time around with radiation was really hard on him, I am really worried about what it will do to him this time. In fact, I wonder why he should even go through with it when the docs said that any treatment will not make the tumors go away, just "slow things down."
Can you say what was your husband's tumor grade? Were they able to remove all the tumor in surgery? Don't want to be too nosy but it's good to hear how well your husband had done with this second brain cancer diagnosis and hoping to see parallels with our son. Thanks.

patriciam
Posts: 39
Joined: May 2009

Hi,
My daughter was diagnosed at 16, she is now 18. At 16, she had a resection, temador and radiation treatments. She did well and was tumor free for 20 months. The ugly tumor showed its face again in October 2010. Surgery cannot be done this time. She is now on Avastin and Iritotecan every two weeks. Along with the tumor, came a cyst that is giving her problems. She is trying really hard to live her life as normal as possible. A brain tumor is hard for anyone to take on, much less a young person. I am sorry for your brother and your family's pain. I so understand it. We all try to stay positive for her and fight this thing until it shrinks away. I have learned a lot through all of this. An 18 year old wants to date, go to college..... be 18. I have learned to hold her hand through this fight, allow her to live her life and encourage her. I have learned not to bring it up all the time and make her relive the nightmare over and over.
God bless.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Bless you Patricia. I hate this for your daughter as well. Can you talk more about the cyst? A cyst in the brain? I had not heard of such and do they think that's caused by treatment, or is the cause unknown?

It's a true art not to constantly talk brain tumors/treatment/appointments with my hubby, because it's such a big part of our lives. We do still laugh, though. Just this morning we had a good a laugh. Because of his vision loss, he can't drive. He has an MRI this afternoon, only about 5 minutes from the house. I asked, "How would you get there if I didn't want to drive you?" (Because I wanted to lounge in bed all day, jokingly.) I answered for him, "You could take a cab. That would be cheap." He said, "No. I'd ride my bike!" We cackled and then I piped in, "Better yet, you could drive your camouflage golf cart, and maybe you'd make it there before someone would call the cops!"

I guess you had to be there, but humor was such a big part of lives before and we hate to be down all the time. As he reminds me, life is still very good.

We pray complete healing for your daughter!

PBJ Austin
Posts: 346
Joined: Mar 2009

About 2 years ago my beautiful young sister was diagnosed with AA3 at age 25. We were devastated as they told us she has 3-7 years to live. The plan was to do 6 weeks of radation then 2 years of chemo using Temador. After 2 years they would decide whether or not to continue chemo.

She had radiation then started chemo in May 2009. At first the MRI's showed no change so they stepped it up. By February 2010 her MRI's were completely clear but they continued the chemo for 3 more months. In May 2010 they stopped the chemo since the MRI's were still clear. Since then she has had MRI's every 3 months and all have been clear. The doctors at MD Anderson said they had never seen it go away as fast as it did for her.

Of course the results vary for everyone but please believe that miracles happen and while doctors do their best, they don't always know everything. I no longer accept the idea that my sister will be gone in a few years.

I wish you and your family the best in this battle. You and all on this board are in my prayers.

Girl2010
Posts: 26
Joined: Jan 2011

That is so great to hear! Things havent been easy yet, but we dont expect them to be. I Guess I wanted to get on here because everything I read on the internet is so grim...not good. Was your sister's tumor inoperable? Glad things are going so well! And thank you for your response!

PBJ Austin
Posts: 346
Joined: Mar 2009

First of all be careful not to google too much. A lot of what you will find is either out of date or a worst case scenario. When my kid sis was first diagnosed I nearly went crazy reading all of the grim stuff about AA3. Then I found this site and it was my first glimmer of hope that she can beat this.

When the diagnosis first came they found 2 tumors, a large one and a smaller one. They later found a 3rd one which was much smaller than the other two. The doc who discovered the first 2 tumors said they were both inoperable. She went to MD Anderson for a second opinion and Dr. Sawaya immediately said the larger tumor IS operable and did surgery. The remaining tumors were not operable but the treatment has worked for her and she has no visible tumors. Needless to say I'm a big cheerleader for a second opinion if you have been told a tumor is inoperable.

All the best to you.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hello, Girl2010.

I just wanted to add my two cents' worth. PBJ Austin is so correct! I did the same thing at first and googled like crazy and it almost did me in. I cried every day for a year. (My 26 year old son was diagnosed with an anaplastic oligodendroglioma--grade III--in May of 2009.)

For me, things improved after a year. I found this site and read posts like PBJ's where people were doing way better than their doctors predicted. I got on top of my emotions. I wish I had known a year and a half ago--where we would be today. I went from a paralyzing fear that we only had days left with David...to a solid hope and a firm belief that he is going to beat this and he will live long and thrive. Get married, have children, enjoy his life. David is doing really well today....he takes Temodar every month and that's not fun, but it's tolerable. (We are very grateful for Temodar.) He had brain surgery and 6 weeks of radiation, and he's recovered from that. He's back in college, working part time, living in a nice apartment in Portland, Oregon. Working out at his gym, riding his mountain bike, hanging out with his friends and family. If you met him, you wouldn't know that he'd ever been sick. We did not imagine this life for him 1 1/2 years ago. We did not even know if he would be alive today.

I'm saying this because I hope it will give you some hope for your brother's future. There are people like my son and PBJ's sister who are defying the doctors' predictions and are doing good. Please hang on to hope!

My thoughts and prayers are with you and your brother and your family.
Peace and blessings,
Cindy in Salem, OR

patriciam
Posts: 39
Joined: May 2009

Amen, Cindy!! Let them live their lives!!! So good to hear about your son. Thanks for sharing.

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

Hi there, my daughter was diagnosed with AA 3 in march 2010. She was 12 yr old. She is now 13. She has had 4 brain surgeries to remove recurring tumor growth. She has done the traditional treatments of radiation and temodar which did not work. She is now on a 5 drug regimen. 3 of them are chemo type drugs. She has Avastin every other week and she takes etoposide and thalidomide along with 2 others everyday. She seems to be doing well with very little side effects. She is tired alot, but thats about it. She will get her 1st MRI on Feb 2 since the start of this treatment, so we keep praying that this treatment will work. I have been reading about this new drug that can target brain tumor cells. It's called the Nano-drug. Clinical trials will begin soon. Everyday there are new things being discovered. There is hope. Stay positive and enjoy everyday.

Girl2010
Posts: 26
Joined: Jan 2011

This is all so good to hear. It really is... I will stop googling immediatly ;) It is beyond amazing to hear all these stories of survival... it does give me hope :) It has all gotten worse these first few months, we cant seem to catch a break but hopefully soon things will be on the upswing right? :) Thank you so much<3

PBJ Austin
Posts: 346
Joined: Mar 2009

Hello friends, I just wanted to share a bit of good news with you. My kid sister just had her quarterly MRI and once again she is kicking cancer butt. No visible cancer!! It's hard to believe that 2 years ago we thought she would be on her way out by now, yet one year ago she had her first clear MRI and all have been clear since.

momsworld, I often think of you and your brave little girl.

To all of you, keep hope alive and know you are all in my prayers.

Girl2010
Posts: 26
Joined: Jan 2011

That is so encouraging to hear, and so happy for you sister, and your family. I'm sure you know how I feel...as this "waiting game" seems to be going on and on... we are waiting word from a doctor in California, and for my brothers second MRI since treatment started. If nothing has changed and we do not hear from our first choice doctor they will be off to Duke I believe. Somewhere anyways-as we do not live in a big city :)

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for sharing that great report! I am so happy that your sister is doing so well! And I am so grateful for the encouragement it gives to me and to others on this site. Thank you for taking the time to keep us updated.

I have been praying for you and your sister for quite a while now. I don't know what your name is but I call you Peanut Butter and Jelly Austin when I pray for you and your sister. I think God smiles...

Love and blessings,
Cindy in Salem, OR

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

Everyone should read this guy's story. (He has been my inspiration since I started my WBRT)

this guy's name is george plym and he has been an AA survivor for more than 40 years!!!! He underwent countless radiotherpies and 11 recurrences and surgeries and he even had a part of his brain removed. you can even email him (I emailed him once and he responded too)

http://www.virtualtrials.com/survivegeorge.cfm

he is a living proof that not everyone with cancer will have shorter lives.

PBJ Austin
Posts: 346
Joined: Mar 2009

I do appreciate your prayers. You and everyone on this board are in mine.

I use variations of the name PBJ on a few message boards. The first time I chose that silly name I was thinking of a PBJ sandwich and for some reason I have stuck with that screen name. But if you prefer to use my real name it's Pam and my sister is Stephanie.

Hugs to you,

Pam

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

Hi there,
my now 13 year old daughter who has been diagnosed with AA3 just had her 2nd clear MRI. What good news. She is on a 5 drug regimen, 2 of the 5 are oral chemo and Avastin everyother week. She seems to be doing very well with this treatment other than being tired alot. So far so good. For all of you who feel that you just can't get ahead, I know how you feel. My daughter has had 4 crainiotomies to remove new tumor growth. She went through traditional treatment of radiation and oral chemo, which did not work. We decided to go to a different hospital and cancer center. They told us that there are options. She has been on this new treatment now for about 4 months. We are hoping and praying that this treatment will continue to work. If you can, go to a teaching hospital. We are now going to Dana Farber/The Jimmy Fund Clinic and Childrens Hosp in Boston and they have been WONDERFUL. They not only treat the patient, but the whole family. I will never bring my daughter anywhere else for her treatments,EVER. We still have such a long road ahead, but the JMC has made things so much easier for us. You need hope and they give it.

patriciam
Posts: 39
Joined: May 2009

I am so glad to hear your daughter is doing well. Praise God.

PBJ Austin
Posts: 346
Joined: Mar 2009

That's the best news I've heard all day. I'm glad you found a new hospital. My kid sis started out with a doctor that didn't offer much hope but she went to MD Anderson for a second opinion and she just had another clear MRI in January.

Friends, if you are not happy with the care you are getting I cannot stress enough the need to seek other options.

Hugs and blessings to all.

Finnegans Mom
Posts: 12
Joined: Jan 2012

Hey,
My 23 month old son was diagnosed with a thalmic AA3 in dec of 2012. He had 3 resections and the tumor was 90% gone. Then in June they saw it had grown a little. Then he had 3 rounds of chemo which included vp-16, carboplastin and cytoxan. During the last two months his tumor grew dramatically and is now entering other parts of his brain. We were told he has months to live. We are not giving up, his info is out to 13 hospitals. We are checking into alternative treatments. I was wondering where your daughters tumor was located? What worked best for her? We were told that the chemo he received was the best and that nothing would be as effective. What drugs are working for your daughter?

thank you so much, Nicole Mondroski- Finnegan's Mom

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Fabulous! We've got one clean bi-monthly MRI behind us, yet we are fighting blindness from radiation necrosis. We're keeping hope alive that cancer will be no more for the second time, and we know miracles happen!

Thanks for sharing the good news! Celebrate!

PBJ Austin
Posts: 346
Joined: Mar 2009

Keep the good news coming. BRAVO!!

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

HI:

Do you mind if I ask what treatment your sister got? My daughter has Anaplastic Astrocytoma 3 and had surgery (only partial removed tumor,but got most of it), then radiation and now chemo.

We are going back for a new MRI to see how she is doing. They were still concerned last time that it wasn't working, so I am trying to find options.

This is a dreadful illness. It is so hard to watch family members suffer. I hope you are all doing well. God bless you.

patriciam
Posts: 39
Joined: May 2009

HI KM Ponder,
Yes, she has a cyst above the tumor. The neuro-surgeon said that she has seen this happen many times and that the cyst usually shows up in the same place as the tumor. She said they are not sure why it occurs but it may be as a result of treatment.

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

Bless you Tricia, you have went through this with ur husband and now ure precious daughter. I know thta has got to be hard. I found out bout mine in nov 2010, but first got sick march 2010. This has been hard enough with me having his, i am so scared i wont live long enough to see my daughter raised, thats my biggest fear right now. bless u and ur daughter loveheart952000@yahoo.com

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

Hi:
My 17 year old daughter was diagnosed in February with AA3 with one tumor, but hey could not remove it all surgically. We did radiation and chemo and now we rae in the Temodar combined with the infusion every other week.
I understand the frustration and sadness of watching your beautiful young daugher want to drive and go off to college but being held back by this horrible illness. We still don't know if our daughter is in remission. I hope and pray.
Have you heard of any alternative treatments that work? I hope and pray for your daughter as well.

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

Hi:

I have a 17 year old fighting the same devasting illness. It is so hard to watch them struggle. I accidentally posted to the wrong person, so you may see a similar email. I intended it for you. I hope you are doing better! God bless you and your daughter.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network