Grade 3, an anaplastic astrocytoma

alutiiqmom

I_Promise said:

Dear Alutiiqmom
I am sure that you posted the information before but could you please remind me why your daughter is on the infusion of both avastin, irinetecan and temodar? Is it that Duke is being more aggressive than the regular treatment of just surgery, radiation, temodar? I am curious.
And as far as the sugar, I agree with your naturopath. My sister eats very rarely anything that has sugar.

Julia

treatment
Hi Julia:
Part of Sarah's cancer was located in an inoperable place in the brain, the basal gangalia. Her surgery and chemo was started at Seattle Children's Hospital in Seattle. Her NO said that with children they always treat more aggressively to give them the best chance of beating it. Right now the NO wants Sarah to stop the Temodar but our Alaska doctor and us have decided to keep it going because we really want to beat that cancer. The NO said that there is no evidence that the Temodar provides any real benefit past six months and it makes Sarah so sick that her quality of life is pretty poor. We are going to go to either UCLA San Fran or MD Anderson this Spring and get another opinion because there are not any NO's in Alaska. It is very scary, as you know. Sarah's blood work actually tolerates the Temodar, it is the nausea that gets really bad. I am really afraid about the Avastin only working to keep the tumors at bay while the patients are on it. I am really relying on my faith to guide us. Sarah has stable MRI's right now, but they have two spots they are watching (whatever that means). I have been struggling to be hopeful lately but I am trying to keep my faith and pray. I send you and your sister God's Blessings Julia.

Edna

Eng

alutiiqmom said:

18 year old female with Anaplastic Astrocytoma 3
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

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

alutiiqmom

Eng said:

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

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

Alutiiq Mom/Edna

sonfollower

BuzzyBee1208 said:

3-6 months Doc says
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

Hi Buzzy
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

BuzzyBee1208 said:

3-6 months Doc says
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

AA3 SURVIVOR 4 YEARS AND COUNTING
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

dklaisle said:

AA3 SURVIVOR 4 YEARS AND COUNTING
Yes it is possible to survive this. In the beginning I didnt believe it. Would like to chat with someone experiencing the same challenges

Thanks for posting
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

Jeannie20

alutiiqmom said:

18 year old female with Anaplastic Astrocytoma 3
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

Hi Edna,
My boyfriend also
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.

Jeannie20

alutiiqmom said:

what kind of cancer?
HI KM Ponder-

What type of brain cancer did your husband have? I am sorry for your loss. May God comfort you during this difficult time.

Edna

Hi Edna,
I had been in
Hi Edna,

I had been in contact with Kim last year, but haven't heard back from her. can you email me please?

jirue001@gmail.com

MIBsShad

Help and Advice
Hello,

My Dad has just been diagnosed with a grade 3 anaplastic astrocytoma on the
frontal lobe, left side. Doctors have said it cant be removed as they cant get to it and has been given the statistics of 18 months to live. My dad says hes not a statistic hes an individual! My dad is a fighter and only 18 months ago had testicular cancer and beat it!
He starts radiotherapy in 3 weeks for 6 weeks. I really dont know much about this or what can be done to help.
Any help and advice would be amazing!
Thank You

alutiiqmom

BuzzyBee1208 said:

3 years
12/10/11 3 year b-day. I have read that 14 years is the new goal to beat IM working on it. Everycase is diffeent If he is doing good God is Good.... Eat cancer fighting food cut out as much red meat as possible NO NO sugar and starch. I dont know much but I am willing to share what i have learned.

medical care
Hi BuzyBee:

Do you mind if I find out type and location of tumor? Also, where was your treatment at and what type of treatment? Thank you for sharing. Congratuations on your three years - I hope they were grand. God Bless you.

Edna

ChristyM

cushla69 said:

christy i was diagnosed with
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.

Sorry I do not get on here
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

Singh75

MIBsShad said:

Help and Advice
Hello,

My Dad has just been diagnosed with a grade 3 anaplastic astrocytoma on the
frontal lobe, left side. Doctors have said it cant be removed as they cant get to it and has been given the statistics of 18 months to live. My dad says hes not a statistic hes an individual! My dad is a fighter and only 18 months ago had testicular cancer and beat it!
He starts radiotherapy in 3 weeks for 6 weeks. I really dont know much about this or what can be done to help.
Any help and advice would be amazing!
Thank You

Anaplastic Astrocytoma 3
My dad was diagnosed with same in last Dec. He is 75 yrs old and has been physically active (rode bike until last 3 months). Just before the diagnosis, he gradually started to loose speech and balance. Doctors found AA3 in his brain front left lobe, and operated to remove some part of tumor. His speech and balance recovered well after the surgery and with light physical therapy. He's now undergoing 1 month of Temodar (100mg) and 6 weeks of radiation. Showing usual side effects (nausea,vomiting,tiredness,less appetite). He was also prescribed pantoprazole and ondansetron to reduce these side effects. His prognosis read 6-18 months which scares us. Has anyone had a senior family member diagnosed with AA3 and survived longer? That will give us some hope. He's become very weak now. We're worried how he will manage to go through 6 more monthly cycles of temodar. Does anyone know any alternative treatment, foods/diet, etc to fight this off. Any suggestion, advice will be much appreciated. Thanks,

alutiiqmom

How is your nephew doing today?
Hi Janet:
I don't know if you still get on to this site, but I wanted to checkin. We are headed to MD Anderson in March. My daughter also has AA3. How did your nephew do after the treatment? What was his treatment? Where was his tumor located? I hope you check in periodically. I hope he is doing well. God Bless you and yours.

Edna

alutiiqmom

megansmom said:

My daughter was diagnosised
My daughter was diagnosised with anaplastic astrocytoma in Nov. 2009, after surgery to remove 95% was done in Oct. She has now went through the radiation and is still receiving Chemo. What did you receive for treatment with your diagnosis? We are afraid everyday that it will not stop, that it will return, your story is one of the few I have found that is close as far as age at diagnosis. She had no symptom until a focal seizure occrred in her left arm, the tumor was in her parital lobe 6cm x 4cm, thought that they got 99%, until diagnosis came back and then small area next to it became a concern. They are treating this area as cancer however could also be normal brain tissue. I know that pathology is important, and she had a gain in 1p and 19q no losses, and no visual other abnormality other then the p53 factor. Do you know what your pathology was? Please if anyone is able to help with information, it would be so helpful, she is 15yrs old and scared. Not to mention how scared MOM is!

How is your daughter doing today?
Hi Megansmom:

My daughter is 18 years old with AA3. She was diagnosed at 17. She had surgery, radiation and is finishing chemo. How is your daughter doing today? I hope you and your family are doing well. God Bless you.

Edna

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.

How is your husband doing today?
Hi:

Our 18 year old daughter has Anaplastic Astrocytoma 3 in 2011. She had surgery, radiation and it currently doing chemo. I am checking in with people who were diagnosed before her, just seeing their treatment, quality of life and how they are doing overall? Where was your husband treated? I hope he is doing well. God Bless you.

Edna

alutiiqmom

kitkatkaz said:

Anaplastic Astrocytoma stage 3 5ys out cancer free

Hi there, I am 5yrs out, Cancer free and drug free. I know many authroities do not give much hope past 2yrs.

The tumor I had was in the right frontal lobe. Had 28 radiation treatments, and 6 months of Tremdor chemo pills. Steriods, and dilantin, but have not taken any meds since I finished the Chemo pills.

I am sure there are more people out there, cancer free, from this as I am. I was back to work full time, within two months from operation, had to be out of work for the week of chemo pills, each month following after returning to work.

Hope this is helpful.... I would like to hear from someone who is futher out then me.
God Bless KitKat

How are you doing KitKat
HI:

My 18 year old has Anaplastic Astrocytoma 3. She finished surgery, radiation and is doing chemo. I am checking on people who were diagnosed before her. Do you mind sharing your location of tumor; treatment; facility and how you are doing today? I hope you are doing well. God Bless you.

Edna

alutiiqmom

patriciam said:

AA3
Hi,
My 17 year old daughter has AA3. She was diagnosed at 16, reminds me a lot of your experience. She went to the eye doctor, medical doctor twice, then we took her to ER. That is where they found the tumor. She has had 6 weeks of radiation and 42 days of Temador. Now she is on her 5th cycle of Temador and CCNU. She tolerates it well with the help of Zofran. You are not alone in this horrible tumor. She did have surgery in Feb. 2009 and after the surgery, the doctor told us the same thing he told you, probaly grade 1, will never come back. Two days later we got the news it was grade 3. God bless you.
pat

how is your daughter
Hi Patricia:

My daughter was also 17 when she was diagnosed. She presented with severe anxiety and her tumor was AA3 on the left frontal lobe. They surgically removed 85-90% but could not get it all. She had radiation and is currently finishing the chemo.
How is your daughgter doing today? I hope you are all well. God Bless you.

Edna

munurse07

BuzzyBee1208 said:

3-6 months Doc says
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

My doctors have not given me
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.

blackngray

chicken2799 said:

Connsteele
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

Gulf Coast Area
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.

BenLenBo

BuzzyBee1208 said:

3-6 months Doc says
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

Try 18 Plus Years
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