Grade 3, an anaplastic astrocytoma

alutiiqmom

Saxon66 said:

I had nearly the same
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.

How are you doing today?
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

alutiiqmom

Girl2010 said:

You have what my 19 year old
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...

Did you find any trials
Hi:

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

alutiiqmom

ronefx said:

I had a grade 3 astrocytoma
I had a grade 3 astrocytoma tumor removed feb 1993 at Herman Hospital in Houston, TX. I had 6 weeks of radiation and a year of chemotherapy at MD Anderson after the surgery. I was 18 then and am 34 now, just had a M.R.I. and everything still looks good. I trust and know the Lord had his healing hand involved. I found this site, looking for a website that has some survivors after effects, if that makes sense. I feel tired often and unmotivated. I also have other problems that doctors can't seem to find an answer to, so if anyone knows of a website please post it here, thanks.

Thank you for hope
Yes ! Thank you for hope. My daughter was just diagnosed this year and we are full of fear. We are believers and have faith, but still get scared.

I am sorry that you feel tired and unmovtivated, but I am happy to hear of your longetivity. Did the the year of chemo make you really sick or was it ok for you? My daughter is so sick from her chemo.

Also, was your first MRI after radiation a clear one?

alutiiqmom

Fusionera said:

Grade 3, an anaplastic astrocytoma
Hi Janet,

I just joined this network and I saw your post. I am a 14-year survivor of a grade 3 oligoastrocytoma, so yes it CAN be done.

The doctor told my parents flat out on September 8, 1995 when I was diagnosed that "we will do everything we can to make her comfortable." They weren't too optimistic after they'd found a softball-sized tumor in my right temporal lobe. At that point I was given about 3 weeks. I had a nearly seven-hour surgery 4 days later on Sept. 12th. I was 26 years old, not too much younger than your nephew-in-law.

I had radiation and started what was then a standard chemo cocktail, which did not work. I had a second surgery 7 months after the first, in April 1996, and they got everything that time. I was then enrolled on the Temozolomide clinical trial (I was one of the original guinea pigs on that drug!) and successfully completed it in May 1997.

Unfortunately, in 2005, 8 years after chemotherapy and without any symptoms, the tumor returned. I found out the day that escrow closed on my house...lucky me! No surgery this time, just more chemo and now I am fine, in remission, and still tumor-free. My neuro-oncologist said that we will treat this more like a chronic condition than a life-threatening illness like when I was diagnosed in 1995.

So- YES...it can be done. I'm still here over 14 years later...oh...AND I got my master's degree after having two brain surgeries. :-)

Thank you!
Hi:

Thank you for sharing your story to give us all hope. I am so thankful I found this website. Praise be to God that this is available.

alutiiqmom

Dannyfic said:

Astrocytoma
I was diagnosed with a grade 3 anaplastic astrocytoma in March of 2008. I had the 4 cm tumor removed during a craniotomy. After surgery I started a 42 day cycle of temodar I think 100 something mg a day. I also did 6 weeks of radiation (targeted) twice a day. I took one month off and them did 12 months 5 day cycles of temodar at I think 480mg a day. I am at 3 month intervals for MRI and just had a clean one a few weeks ago. I feel great (aside from the whole reality of it) and suffered no deficits from surgery. They say it usually starts to recur after a year or year and a half. I'm at 2 years 8 months and have my fingers crossed.

questions?
Hi:

Can I ask you a few questions? Did they get all of your tumor? You had radiation twice a day?

Have all of your MRI's been clean? My daughter had surgery, but they could not get all of her her tumor located in the left frontal lobe. She then did six weeks of radiation, one time a day followed by a year of maintenance chemotherapy which includes temodar.

Her initial MRI was not too clear on whether their was still residual tumor or whether the site was healing? does this sound familiar on this road to recovery?

Thanks.

alutiiqmom

be473 said:

Beating the odds
Hi Janet,
Don't know if this helps, but I have a story of survival way beyond their prognosis!
My husband was diagnosed in 2000 with a AAgrade3. He had it removed and had radiotherapy. He began Chemo (IV) but had to stop, as he had a really bad reaction to it. (Really bad!) Then he was completely tumour free for 5 years. Then 5 months after our son was born it came back. Couldn't operate, so they treated it with a different type of Radiotherapy, a one off... this was not so great, as it grew very quickly. (In hindsight I think they were thinking it was going Grade 4, talking about it moving to other parts of the brain) His original tumour was 7.5cm, and the reoccurrence got to I think from memory about 3cm. After the radiotherapy was a bust, he was put on a 2 year course of Oral Chemo (Tremador) to "control the growth" and attempt to shrink the tumour. After 7 months it disappeared completely, and has been gone ever since (kissing my ear for luck). He has 6 monthly MRI's, but life is as normal. He has suffered a stroke due to a side effect of the second radio therapy. This caused some issues with vision, but other than that you would never know that he was sick. He is currently working and studying to gain a diploma. I am very proud of him, he has a great attitude. So much so that I am writing a book about him, because I believe that his story is one that can inspire others in the same situation.
Two complimentary treatments that we both believe saved his life are Kinesiology and Reike. We did everything the Dr's said and a little bit more... they can't explain it, but who cares. He's here, and that's all that matters!

Hope this is helpful!

complimentary treatments?
Hi:

What do you mean by complimentary treatments? Were they in addition to radiation and chemo?

alutiiqmom

DistancerunnerXC said:

Best of luck!!
I am retired USAR..I did have 8 years active duty but nothing like your experience.
I take my wife to MD Anderson..always want her MRI's to go off at Mays Clinic...but lately, they've all been 3rd floor main building...
Man, I like that big waiting room over at Mays..
My wife has GBM4...
Be careful about that radiation...
If the report indicates "flairs" or "treatment effects" tell the doc to watch that close!
I never dreamed radiation treatments could do so much to a person..but it really sent my wife for a loop about a year after the treatments were over....
Best of luck to you!
I think the real secret to health are those mashed potatoes with the peals grounded up in them in the MD Anderson chow hall.

flairs? treatment?
Hi:

I have seen those very words in my daughters MRI report. What should we be watching for? Please? We are in the middle of this journey and trying to figure out the best plan for our 17 year old girl.

Thanks.

alutiiqmom

momsworld said:

Dear alutiiqmom
Hi there, my 13 yr old daughter has been diagnosed with AA3 also. She was 12 when she was diagnosed. We found her tumor only after I demanded a ct scan from her pcp. She had surgery 4 days after. 4 days after that she had her 2nd surgery to remove tumor that they couldnt get to at the first surgery. Once her incision was healed she went through 35 radiation treatments and was taking Temodar. That was july 2010. In Sept 2010 she had her 1st MRI and there was signs of new growth. She had her 3rd surgery. At that point, her doctors told us that there was nothing more that they could do and to enjoy my time with her. I told them to go to -ell. I took all her records and left. She now goes to the jimmy fund clinic/dana farber in boston mass, she is on a 5 drug regimen costisting of 2 oral chemos that she takes everyday and IV avastin every other week. She has been cancer free for 7 months. I do know of a clinical trial that someone we know is on, it is an injection of an HPV virus that is injected into the tumor. So far his tumor has shrunk by 50%. We also are christians and believe that God is walking with us through this journey. I want you to know that you are not alone and if you EVER need to talk or vent, I am here for you. God bless you and your daughter

Thank you
Thank you for sharing your journey. I need to hear your encouraging words. Also, knowing where your daughter is being treated is helpful. We will do her second MRI in July and I am trying to remain positive but I am afraid.
Do you mind if I ask your daughter's doctors name? Or for more information on the trial?

I hope there is not new growth in July, but if there is I am sure we will do the same as you and take her records and go to a new facility, maybe even the same one and get our girl healed!

Many blessings to you and your daughter - seven months cancer free! Praise be to god! I wish you the best in this life. I hope we can stay in touch and learn from each other. God Bless you and your daughter.

momsworld

alutiiqmom said:

Thank you
Thank you for sharing your journey. I need to hear your encouraging words. Also, knowing where your daughter is being treated is helpful. We will do her second MRI in July and I am trying to remain positive but I am afraid.
Do you mind if I ask your daughter's doctors name? Or for more information on the trial?

I hope there is not new growth in July, but if there is I am sure we will do the same as you and take her records and go to a new facility, maybe even the same one and get our girl healed!

Many blessings to you and your daughter - seven months cancer free! Praise be to god! I wish you the best in this life. I hope we can stay in touch and learn from each other. God Bless you and your daughter.

hi
Hi,
We see a Dr. Nathan Robison and Dr Flemming (a fellow). Everyone at the Jimmy fund is so nice. We could not ask for a better place to be. I have also considered MD Anderson, but there is someone I know who's son has AA3 and they went to MD for a 2nd opinion and they said that he is getting the same treatment at JFC as he would there. Dana Farber/JFC are up to date on treatments. Boston Childrens hosp/Dana Farber has been voted #1 in the country for 2011. Good luck, I will pray for you all and I would love to keep in touch

goodboy

alutiiqmom said:

Did you find any trials
Hi:

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

anaplstic astrocytoma
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

alutiiqmom

kellbell said:

My husband was diagnosed
My husband was diagnosed almost 11 years ago with an anaplastic astrcytoma stage 4 on his left frontal lobe. they did surgery and and couldnt remove it because of where it was at. He underwent 6 weeks of radiation. the doctors gave him 1 year to live. He was tumor free up until may of this year. He had surgery on June 10th and they removed 98% of the tumor.This time when tumor came back it was a grade 3. He is undergoing chemo right now and has some right sided weakness. But other than that he is recovering well. THE docs say he has a long life ahead of him.

Keep God in your heart and mind and you will get through anything. He is the answer to all. Put it in his hands and he will carry them through it. Keep on the bright side.. YOu can't look at it as the end of your life..Do not ever give up hope. We have you in our thoughts and prayers.

hospital?
HI:

My daughter also had her AA3 on the left frontal lobe and they could not remove it all. Do you mind if I know what hospital and doctor? We live in Alaska and travel to Seattle currently.

triad

momsworld said:

hi
Hi,
We see a Dr. Nathan Robison and Dr Flemming (a fellow). Everyone at the Jimmy fund is so nice. We could not ask for a better place to be. I have also considered MD Anderson, but there is someone I know who's son has AA3 and they went to MD for a 2nd opinion and they said that he is getting the same treatment at JFC as he would there. Dana Farber/JFC are up to date on treatments. Boston Childrens hosp/Dana Farber has been voted #1 in the country for 2011. Good luck, I will pray for you all and I would love to keep in touch

support
I'm Marc and new to the CSN as of today, I wondered if anyone knows of support groups in Chicago area? I'm going through a lot of confusion and borderline depression and it seems like most people who are well don't get it?

PBJ Austin

triad said:

support
I'm Marc and new to the CSN as of today, I wondered if anyone knows of support groups in Chicago area? I'm going through a lot of confusion and borderline depression and it seems like most people who are well don't get it?

Hello Marc, welcome to our family.
If you ever need to chat this forum is a great sounding board as well as a wonderful resource for info. We are always here for you.

I did a quick google for support in Chicago and I found this. I hope it helps.

http://www.gildasclubchicago.org/home.jsp/

http://www.cancer.northwestern.edu/public/connect/support_groups/index.cfm

http://www.reshealth.org/yourhealth/support_groups_details.cfm?subject=Cancer

annstillhere

triad said:

support
I'm Marc and new to the CSN as of today, I wondered if anyone knows of support groups in Chicago area? I'm going through a lot of confusion and borderline depression and it seems like most people who are well don't get it?

chicago support
there is a great group in the NW SUBURBS CALLED "THE WELLNESS PLACE" AVTIVITIES AND ALL KIND OF SUPPORT. if you need more info let me know

edslas

triad said:

support
I'm Marc and new to the CSN as of today, I wondered if anyone knows of support groups in Chicago area? I'm going through a lot of confusion and borderline depression and it seems like most people who are well don't get it?

Far west burbs
Delnor hospital in Geneva has a 'Brain Tumor Resource and Support Group'
www.delnor.com/supportgroups

I agree, most people say, don't worry-you will be ok. Well, that's probably not true, but it is good advice. Your life has taken a turn beyond your control, but you can make the best of it.

You can read my story at:
edslas.blogspot.com

alutiiqmom

momsworld said:

hi
Hi,
We see a Dr. Nathan Robison and Dr Flemming (a fellow). Everyone at the Jimmy fund is so nice. We could not ask for a better place to be. I have also considered MD Anderson, but there is someone I know who's son has AA3 and they went to MD for a 2nd opinion and they said that he is getting the same treatment at JFC as he would there. Dana Farber/JFC are up to date on treatments. Boston Childrens hosp/Dana Farber has been voted #1 in the country for 2011. Good luck, I will pray for you all and I would love to keep in touch

update
Hi Momsworld:

We had our July MRI and it was good! Thank God and all of the prayers. There was no growth and no change, so we are sticking to our plan as of now. The Temodar is dreadful though. We are finishing up a five day course and it kicks my daughters butt. thanks for the informaiton on the docs and hospital, I am going to keep that tucked away. We are going to look for some support groups this fall because I think my daughter needs to meet some other teenagers battling cancer. It wouldn't hurt me either. Many blessings to you and your daugher.

scai

Hi everyone, my name is
Hi everyone, my name is Steffanee and I was diagnosed in June 2011 with an Anaplastic Astrocytoma at age 19. Going through radiation and oral chemo (Temodar) currently, next MRI is on August 22, then I'll start six months of a 5/28 cycle of twice the dose of Temodar in September.

I presented with a seizure as I was getting ready to leave class at my community college (thank goodness I was talking to my friend, if it had happened five minutes later I'd have been behind the wheel of my car), the did a CT scan at the ER and it came back abnormal, so they did an MRI and found what they called multiple lesions on my brain, the largest being located in the left frontal lobe. They told me it was either MS or a brain tumor, most likely MS because of the multiple areas. I was put on anti-seizures (Keppra, no it doesn't make me grouchy, haven't had a seizure since) and had an appointments with the neurosurgeon the next day (I think normally they send you to a neurologist but when they showed him the scans he told them to send me to her so...). They did a lumbar puncture to test my spinal fluid for MS markers, but it came back negative. So it was a brain tumor! But most likely low grade, she assured me, because the borders between the mass and healthy cells was really well defined and it didn't show any enhancing when they added the contrast. They didn't have the technology here in Idaho to complete the surgery to the best the surgery could be completed, so I was recommended to Swedish Medical Center in Seattle to have it removed. My surgery was on June 8th and they were able to remove it 100%, but the pathology came back 70% grade II and 30% grade III, so they're treating it as if it's all a grade III, very aggressively. They also decided to treat a spot on the right side that appears brighter than the others on the MRI so they're treating that side with radiation also, as well as the pathway in between the right and left sides.

Mostly I just wanted to share my story with you guys and get some networking going with other survivors/family members. I'll keep you posted on my progress!

SP24

cancerfreeinhope said:

I had just about the same
I had just about the same set-up. Grade 3, went to MD Anderson had surgery,6 weeks of radiation, 13 months of Temodar,lost 30 lbs. That was in July 2003, this July was my 5 years cancer free.. I am back at work, the only thing that I have noticed is that I'm more tired than I was before.

During radiation they told me that one in a thousand would lose their hair permenently. I was the one. So now I have to wear a hair piece. If I was a guy I wouldn't worry about it, but I scared one of my son's friend one night when I wasn't wearing a hat and decided to buy a hair piece.

Six months post-op. I had a Grand Mal Seizure and ended up in ICU for a couple of days. Now I take Depokote daily and have it under control.

What Dr. do you see at MD Anderson? I love that hospital, every person that we have met have been so nice and helpful. The only thing I don'at like is it's 6 hours from where live.
That's a long drive.

How are you doing?
Hi,

I was given hope by your 5yr cancer free report. I hope you are still doing wonderfully. I was diagnosed last October, and have been doing pretty well post surgery and radiation.

cushla69

Diablita said:

Praying for you
I'll be praying for you and that you will still be cancer free. I just got diagnosed with your same type of tumor this past week, and all I ask GOD is to please let me see my little children grow up ( they are 2 and 4 yrs old ) even if I don't get cured, I ask GOD that with treatments and surgery I can still be around at least until my kiddos are adults.

I pray the same thing every
I pray the same thing every night Diablita, i know how you feel about ure babies, that seems to make it so much harder. Just try and keep ure faith, i am trying and i will keep u n my prayers

cushla69

scai said:

Hi everyone, my name is
Hi everyone, my name is Steffanee and I was diagnosed in June 2011 with an Anaplastic Astrocytoma at age 19. Going through radiation and oral chemo (Temodar) currently, next MRI is on August 22, then I'll start six months of a 5/28 cycle of twice the dose of Temodar in September.

I presented with a seizure as I was getting ready to leave class at my community college (thank goodness I was talking to my friend, if it had happened five minutes later I'd have been behind the wheel of my car), the did a CT scan at the ER and it came back abnormal, so they did an MRI and found what they called multiple lesions on my brain, the largest being located in the left frontal lobe. They told me it was either MS or a brain tumor, most likely MS because of the multiple areas. I was put on anti-seizures (Keppra, no it doesn't make me grouchy, haven't had a seizure since) and had an appointments with the neurosurgeon the next day (I think normally they send you to a neurologist but when they showed him the scans he told them to send me to her so...). They did a lumbar puncture to test my spinal fluid for MS markers, but it came back negative. So it was a brain tumor! But most likely low grade, she assured me, because the borders between the mass and healthy cells was really well defined and it didn't show any enhancing when they added the contrast. They didn't have the technology here in Idaho to complete the surgery to the best the surgery could be completed, so I was recommended to Swedish Medical Center in Seattle to have it removed. My surgery was on June 8th and they were able to remove it 100%, but the pathology came back 70% grade II and 30% grade III, so they're treating it as if it's all a grade III, very aggressively. They also decided to treat a spot on the right side that appears brighter than the others on the MRI so they're treating that side with radiation also, as well as the pathway in between the right and left sides.

Mostly I just wanted to share my story with you guys and get some networking going with other survivors/family members. I'll keep you posted on my progress!

dear Scai, when I started
dear Scai, when I started reading your story it sounded like u were talking about me except for MS . They told me I have AA In June 2011 also. Had open brain biopsy on Nov 9, 2011. they started me on radiation and temodar dec 21, 2011 to feb 3 , then i restarted temodar mar 3. for 5 days every 28 day cycle. Since i have had 2 more MRI s and my tumor has grown and a lot of swelling going on. They just started me on Chemo IV and ill continue the temodar as usual. they r treating it aggressively. when this first started, the day i passed out with a seizure , i had just got off school bus (i was the driver) and i drove home and then it happened. i too was lucky. mine is right frontal temporal lobe, deep down in crease. they say it is inoperable. in the beginning they did check me for incephlitus. but anyway just wanted to see how how things r now. our stories sound so much a like. hope u r doing ok