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Astrocytoma Grade III-Survivor

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  • cindysuetoyou
    cindysuetoyou Member Posts: 513

    Thank you
    Thank you so much for your kind words. I read it out loud to my husband. They made me smile and cry. And the story of your friend's husband does help. I need to hear survivor stories. And thank you for praying for Finnegan. I will pray for your son as well. Do you have any helpful books that I should read?

    Nicky
    Madison, WI

    Hi, Nicky.
    Hi, Nicky. Thank you for writing back to me.

    I read Lance Armstrong's book, "It's Not About the Bike" and I loved it. He didn't have a primary brain tumor but he did have a bad prognosis and his cancer did end up metastasizing to his brain. But he beat it and I love his fighting spirit. And not only did he beat it, but he won the Tour de France I think SEVEN times after he had cancer. What an inspiring man! I also joined his charity LIVESTRONG on FB and I get a lot of encouragement and inspiration from their posts and links.

    Here's another link that I like too:

    http://livingwithbraincancer.com/default.aspx

    It's maintained by the wife of a guy who has glioblastoma multiforme, which is a really difficult brain tumor. People who battle that type of brain tumor usually get a really bad prognosis--often like under a year or two. But this guy has been fighting it and living well since 2006. His wife is really faithful about updating their site, so they don't leave people hanging and wondering how he is doing and if he is still tumor-free. They are also very proactive about posting links and information on new research, etc.

    Here's another site:

    http://virtualtrials.com/survive.cfm

    Great survivor stories! These are people with tumors that usually are given a grim prognosis. I love reading these stories because it confirms to me that sometimes people prove the doctors wrong.

    You may have already found these sites because I have a feeling you've been doing quite a bit of internet research, looking for answers and help for Finnegan. The internet is a powerful resource, but be careful, because it can mess you up too. It can rob you of any feelings of hope if you are not on guard. I almost drove myself crazy when my son was first diagnosed because I read so many negative things. Now I read the bad stuff once, and anything that is good or positive or encouraging or hopeful...well, I copy and paste it and put it in a special file and I re-read it every now and then. I think it's important to nurture and guard and protect a feeling of hope and a fighting attitude. I let my hope slip and I'm having a hard time regaining the emotional ground back.

    Finally, I have to say that I think the most important book you can read is the Bible. I read about 30 chapters in Psalms last night. It really brought a measure of peace and comfort to me.

    Love and blessings,
    Cindy In Salem, OR
  • TAMMY S
    TAMMY S Member Posts: 16
    bear2222 said:

    I do not know where you tumor is located but if it is in the frontal lobes please answer me this at all times do you understand what is going on around you and are you faced with a time problem as to where people should be, what time it is etc. Please post if the tumor made you feel apathy and did you know you where feeling this way or after you said some did you feel sorry for what you said. Thanks

    you just desribed me
    I have been living in a fog for weeks. It is driving me crazy. I have right tempral lobe GBM grade 4. 1st resection on 1/7/11 2nd resection 1/17/12
  • TAMMY S
    TAMMY S Member Posts: 16
    bear2222 said:

    I do not know where you tumor is located but if it is in the frontal lobes please answer me this at all times do you understand what is going on around you and are you faced with a time problem as to where people should be, what time it is etc. Please post if the tumor made you feel apathy and did you know you where feeling this way or after you said some did you feel sorry for what you said. Thanks

    you just desribed me
    I have been living in a fog for weeks. It is driving me crazy. I have right tempral lobe GBM grade 4. 1st resection on 1/7/11 2nd resection 1/17/12
  • BenLenBo
    BenLenBo Member Posts: 145

    chemo drugs?
    Hi Chicken2799:

    My daughter is currently completing the chemo phase for her Anaplastic Astrocytoma. She also had surgery and radiation. Do you mind telling me what drugs you took? Did you have a port? Sarah is doing Irinetecan and Avastin 2x a month via infusion. Then on the beginning of her last infusion for the month she takes Temodar for five days. Her main neuro-oncologist wanted to stop the Temodar because she gets so sick from it. It seems like I read other people blogging that it works though. Did you take Temodar? I am happy for you and your family. God Bless you. Thanks for sharing.

    Edna

    Temodar
    My son is taking Temodar, the 5 days on 28 off. So far he has had no side effects from the drug. He was diagnoised September 25, 2011 with a Grade III Oli. 99% percent of the
    tumor was removed from his left frontal lobe. He has suffered no effects, is good as new. He was given 6 weeks of radiation and Temodar at the same time. Took motion sickness pill 20 minutes before the Temodar, and ate a health diet, 3 meals and snacks. The temodar is designed to kill the bad cells in the brain, but will also kill other good cells. Bad cells will die, where the good with recover. Benjamin's enhanced MRI after 6 weeks of treatment showed no cancer. He had 1p/19q deletion. Hope this helps!
  • CDargz
    CDargz Member Posts: 3

    Meds
    I only took the Temodar for 5 days every 28 days. It made me really sick as well, and they gave me Zofran, Marinol, Phenergan as anti-nausea meds. None of them really worked and I was sick 7 days a month. I dreaded taking it every month, and had to take it for a year. I ended it in January of 2011, and so far there has been no reoccurrence of the tumor. I did not have to have a port or any kind of IV Chemo. Just the 6 weeks of radiation and the year of Chemo. I took a small dose of the Temodar 75 mg when I was doing the radiation and had to take it everyday at that time. After radiation I went to the 5/28 schedule and was on a much higher dosage of the Temodar. I want to say it was 450 mg, but I honestly cannot remember right off. Trust me I dreaded taking the medicine each month, and I feel really bad that I actually flushed a pill or two during the year of treatment. I just could not force my self those two months to take the last pill knowing it was going to prolong the awful feelings. She will make it through it, I did! I will not tell you to keep giving it to her due to I was not on the other meds, but so far all is good on my scans.

    How long has she had her tumor? I am sure I have read her story, and I am going now to reaf the profile!

    I will keep you guys in my prayers, please keep me in yours as well!

    Michelle

    (The chicken2799 is my email address, and I hate it being my name on here! Any idea of how to change it?)

    Evil, evil Tomozolomide
    Hello Michelle,

    I recently (09/2011), had an AA3 resected from my frontal lobe. The plan post-surgery was to do 6 weeks of radiation concurrent with 6 weeks of Temodal. Now, I am currently taking these nasty pills 5 days consecutively each month, for the next foreseeable 6 month to a year. I seemed to be doing fine on the initial (dilluted 75%) doseage of Temodal, but as soon as they upped me to the full 380 mg doseage, it felt like being hit with a truck.

    I am a recreational marijuana smoker and even that wasn't enough to offset the nausea or spur and increase in appetite. What bothers me the most is that Cytotoxic drugs like the chemotherapy are non-discriminatory: meaning they kill all cells, not just the cancerous ones. It's essentially like dropping napalm onto the approaching scourge and NOT pleasant at all.

    I am very glad to hear that your scans are clear and that you've managed to fight the worst of this nasty treatment! Hopefully, with more research, future survivors can do so with a medical regimen that doesn't feel like a full frontal assault on their bodies.

    Best wishes:

    Chris from Toronto Canada
  • CDargz
    CDargz Member Posts: 3

    Do You smoke marihuana mate
    Do You smoke marihuana mate ? x

    I have been a recreational
    I have been a recreational marijuana user since my teens (30 now). Once the cancer was discovered, I was able to get priveledges with a local compassion club. Unfortunately even the most PRIMO Indicas were not enough to offset the full grossness of my chemotherapy; but they definately helped. Oddly enough, all of my doctors have been of the 'anti-marijuana' school of thought, despite prescribing pill-form canibinoids to a great deal of their patients. I guess pot's OK if it's not called such, and so long as someone's making a buck off of it.

    All the best to your recovery!
  • smwone
    smwone Member Posts: 3
    Quilmes said:

    Yep it was in the frontal lobe, now it's dead. It's considered a small cyst, that will not reoccur. In addition yes I have short term memory lost, and sometimes date and time problems. What is your story please share it with me.

    How long have you been a survivor?
    How long ago did your treatment stop?
  • smwone
    smwone Member Posts: 3
    kitkatkaz said:

    Anaplastic Astrocytoma stage 3 Survivor- 5+ yrs
    All the Glory goes to God. The tumor was in my right frontal lobe 3cm, with 2cm cyst around it. I had head aches, thought they were sinus, which I had the year before,
    however, I should have known when the tech doing the cat scan asked, when I was going over the results with the doctor, that something was not right. That was Thursday, Friday, My doctor, told me to "sit down, we have a problem".

    That Sunday in Church, the pastor, elders, and congregation prayed over me, and I recieved my healing from the Lord.

    Emergency Brain Surgery, 28 radiation treatments, 6 months of tremdor, and the steriods, and dilantan. 5+ years later, I stand before you.

    Healed and whole in the name of Jesus. Drug Free, Cancer Free.

    If I can help in anyway please let me know
    God Bless Kitkatkaz

    Kitkatkaz, Wow! Cancer
    Kitkatkaz, Wow! Cancer free...that's amazing! I am a survivor 2.5 yrs. G2 Astrocytoma. I have yet to hear the words Cancer free...would love to!
  • smwone
    smwone Member Posts: 3
    kitkatkaz said:

    Anaplastic Astrocytoma stage 3 Survivor- 5+ yrs
    All the Glory goes to God. The tumor was in my right frontal lobe 3cm, with 2cm cyst around it. I had head aches, thought they were sinus, which I had the year before,
    however, I should have known when the tech doing the cat scan asked, when I was going over the results with the doctor, that something was not right. That was Thursday, Friday, My doctor, told me to "sit down, we have a problem".

    That Sunday in Church, the pastor, elders, and congregation prayed over me, and I recieved my healing from the Lord.

    Emergency Brain Surgery, 28 radiation treatments, 6 months of tremdor, and the steriods, and dilantan. 5+ years later, I stand before you.

    Healed and whole in the name of Jesus. Drug Free, Cancer Free.

    If I can help in anyway please let me know
    God Bless Kitkatkaz

    Kitkatkaz, Wow! Cancer
    Kitkatkaz, Wow! Cancer free...that's amazing! I am a survivor 2.5 yrs. G2 Astrocytoma. I have yet to hear the words Cancer free...would love to!
  • heyrabbit said:

    hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

    Are you still out there? I
    Are you still out there? I am going through treatment for grade III tumor and had complete resection,
  • alutiiqmom
    alutiiqmom Member Posts: 256

    Are you still out there? I
    Are you still out there? I am going through treatment for grade III tumor and had complete resection,

    We are all here
    Hi Brandon-
    We are here. I am happy for ou that you had complete resection. Will you need radiation? This is a good site to learn about your illness and to receive support from other patients and their families. Try and stay positive! God Bless you Brandon. My 18 year old daughter is battling brain cancer too. Initially she was diagnosed with AA3, than we got a second diagnosis of Glioblastoma, a grade 4. She has surgery, but they only got 80-90%. Then she had 6 weeks of radiation and Temodar. Now she is in the maintenance phase of chemo for 12 months. It is a rough ride, but we try and stay positive. We also take supplements from a naturopath who is experienced in cancer. Enjoy every minute of life!
    Love, Edna and Sarah
  • We are all here
    Hi Brandon-
    We are here. I am happy for ou that you had complete resection. Will you need radiation? This is a good site to learn about your illness and to receive support from other patients and their families. Try and stay positive! God Bless you Brandon. My 18 year old daughter is battling brain cancer too. Initially she was diagnosed with AA3, than we got a second diagnosis of Glioblastoma, a grade 4. She has surgery, but they only got 80-90%. Then she had 6 weeks of radiation and Temodar. Now she is in the maintenance phase of chemo for 12 months. It is a rough ride, but we try and stay positive. We also take supplements from a naturopath who is experienced in cancer. Enjoy every minute of life!
    Love, Edna and Sarah

    I had a complete resection.
    I had a complete resection. Anaplastic Oligendrioma a small portion of which was grade III and the majority of which was thought to be grade II. I am getting ready to do radiation for 6 weeks and chemo for a year. I meet with the radioncologist and oncologist next week to work out the particulars. Keep your head up before this I knew of no such thing as a brain tumor especially not brain cancer. Two people I know with GBM grade IV survivors of 12 & 14 years with no reocurrance. Prayer is powerful.
  • EFarley1210
    EFarley1210 Member Posts: 8
    cecilp said:

    GRADE 3 AA
    I have had a GRd3 AA since 18th of Jan 2008. I had to operations ( second op they inserted gliadel wafers) I have been on Temazolomide for 4 years now. My cancer is in a dormant state. So far so good. Good luck to all of you fighting this battle. I had a a poem tattooed on my left arm which reads: Cancer survivors are cancer overiders cancer ills often form strong wills lethal chemo for the cancer evil cancer survived is a life revided
    and a grey ribbon with the words searching for a cure. I found out i had the cancer when i was 24 and i am still going strong soon to be 28

    Astrocytoma #3
    Im 51 yr old woman. I was told that my type of tumor is hereditary. I had an aunt with brain cancer. ( she died of a herat attack 6 years into her recovery. I was told less than 3% of woman get the type of tumor I have and that if I was going to get it, It would be before my 50 s I was 48. My dad died at 48 from cancer PETRIFIED.

    I had no syptoms no headaches. I just fell out at work one day. 12/10/08 I woke up to be told I have Brain Cancer. WTH ? You got the wrong room. I underwent the chemo (Temador) and radiation with the mask. I took the aggresive route Surgery chemo and radiation due to the size/location of the tumor. They were able to remove 80 % of the tumor and so far NO new growth. I do however have side effects. PAIN is one of them. I can simple touch something and WOW, ouch. My cognitive ability has been affected and my hearing a little. Eyes are good.

    I am on pain medication which helps to alleviate most of the pain. Most days are great Im walking and swimming I can still drive. I am able to cook & clean and care for my animals. Life is good. I am greatful to be alive and to have found this cancer at a Grade 3, I have three grandchildren I hope to see grow up and have families of thier own. I want to live.

    I TRY to keep a positive attitude. I try to stay busy and surround myself with a positive unstressfull life and people. LOL. Currently expecting litter of Puppies and I have plans for a vacation to Myrtle beach. I swim 2-3 times a week and walk 2-3 times a week. I eat cancer fighting food ( meal and snacks) and use as much herbal medicines, teas as I can.

    My spouse of 21 years could not handle diagnosis and left. I didnt realize my own strenght until then. Scared and confused I fought back with Gods Help ( anger is a great motivator) Forgiveness has been my inspiration and I have managed to survive 3 years 4 months with Gods Help . Not just survive but Live. Working on Bucket list. Just in case but Im optomistic. Thanks everyone for sharing your personal stories. They help.........
  • EFarley1210
    EFarley1210 Member Posts: 8

    i had a grade 3 also. Last
    i had a grade 3 also. Last Januray they completely resected it out of the frontal lobe I had problems with thinking of what i wanted to say, which fixed itself soon after. Eight months later I started noticing mini seizers again so i got tested and surely enough I had a reoccurance. This time due to swelling i couldnt feel my right side for a week, then it took another week for me to be able to learn to walk again. Doing much better now, well except the 5 double dose days of chemo. As of now im going on almost 2 months cancer free again

    oh my goodness. I can
    oh my goodness. I can described an item ,what it does, but for the love of pete I cannot remember the name of it frequently. Guess what ? dont worry about it. I know it frustrating I have learned to laugh at myself. Laughter cures what ails me. People who know me UNDERSTAND. For those who dont I ignore them. I drink Acai on a daily basis have a cup of expresso with breakfats for a little jump start. Look up coffee nd cancer Surprise! Find a cancer fighting diet that works for you. My outlook is IT CANT HURT YA. Every little bit helps.
  • bikegirl
    bikegirl Member Posts: 1
    Daughter-in-law has AAIII
    Hi everyone! i am trying to find hope somewhere on these pages. My new daughter-in law, 28, was diagnosed with AAIII just this week. Well at least that is what one group is saying. Three groups and none agree with one another. Finally she was turfed to UC San Diego and they are also seeming to take forever to diagnose. She had to have craniotomy 3 weeks ago to relieve pressure, otherwise she would have died. She will be without 40% of her skull for about 5 months. SHe has lost a lot of left side function and currently cannot walk.

    Does the brain swelling go down eventually? Do physical and mental functions return?? Not a whole bunch of hard answers from the docs.
  • Treesa
    Treesa Member Posts: 1
    heyrabbit said:

    hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

    AA 3/4
    nearly 2 years ago my dear friend had a seizure that put her in the hospital in a coma. They did tests and confirmed that she had "low grade" brain tumor (non-cancerous). They put her on anti-seizure meds and had her follow-up with MRI's every 3 months. Tumor remained same until about a year later, when she began having more mini seizures. They increased seizure meds and gave her steroids to reduce swelling. within the 2nd year it was clear she was not improving and the next MRI came back showing a "more dense" tumor. it did not grow bigger just became more dense so they did a biopsy. The biopsy results were grade 3/4 Astrocytoma. She started oral chemo (7 days/wk) and radiation (5 days/wk)for I think 35 days. Once treatment completed another MRI showed tumor did not grow or shrink, just densor. During the last year she developed Aphasia. She is really having a terrible time with this, she cannot communicate well. Sometimes we have no idea what she's trying to say....consistently using wrong words that make no sense to us. She, however, is very aware of what's happening to her, understands everything going on around her, and understands what you are saying to her...she just cannot communicate back...cannot find correct words! Very very scary. She no longer takes chemo. She is still taking seizure meds and just began Avastin treatments 2 X week. She is going for her second treatment this week so hopefully we will see improvement. Her dr. is confident Avistin will help. Has anyone had any luck with this medication? Supposedly it cuts off the blood flow to the tumor preventing it from growing.
  • alutiiqmom
    alutiiqmom Member Posts: 256
    Treesa said:

    AA 3/4
    nearly 2 years ago my dear friend had a seizure that put her in the hospital in a coma. They did tests and confirmed that she had "low grade" brain tumor (non-cancerous). They put her on anti-seizure meds and had her follow-up with MRI's every 3 months. Tumor remained same until about a year later, when she began having more mini seizures. They increased seizure meds and gave her steroids to reduce swelling. within the 2nd year it was clear she was not improving and the next MRI came back showing a "more dense" tumor. it did not grow bigger just became more dense so they did a biopsy. The biopsy results were grade 3/4 Astrocytoma. She started oral chemo (7 days/wk) and radiation (5 days/wk)for I think 35 days. Once treatment completed another MRI showed tumor did not grow or shrink, just densor. During the last year she developed Aphasia. She is really having a terrible time with this, she cannot communicate well. Sometimes we have no idea what she's trying to say....consistently using wrong words that make no sense to us. She, however, is very aware of what's happening to her, understands everything going on around her, and understands what you are saying to her...she just cannot communicate back...cannot find correct words! Very very scary. She no longer takes chemo. She is still taking seizure meds and just began Avastin treatments 2 X week. She is going for her second treatment this week so hopefully we will see improvement. Her dr. is confident Avistin will help. Has anyone had any luck with this medication? Supposedly it cuts off the blood flow to the tumor preventing it from growing.

    avastin
    Hi:
    My daughter was diagnosed with Anaplastic Astrocytoma, grade 3 in February 2011. A 2nd opinion in March of this year thought it was Glioblastoma. Either way, the treatment was appropriate. She had surgery, they got 80-90%, radiation and then chemo for 12 months. She had Avastin, Irinetecan and Temodar for the meds. The combo shrunk the area and she remained stable. Before we knew she had a tumor she was also having trouble talking. It is a horrible thing and very scary for them.
    We had an MRI yesterday, but do not know the results yet. I am worried, but trying to be faithful. Last night, she said she was having trouble talking again, can't say the words she wants to say. Oh My! I am trying to remain calm. That was how the whole thing started. She had her last chemo at the end of April this year. I have heard once you stop the chemo it comes back. I pray not. I pray for Life in Abundance for my daughter. She is only 18. I wish you the best. It is a scary, roller coaster ride. Find you faith, it will calm you during difficult times. God Bless you.
    EDna
  • momsworld
    momsworld Member Posts: 135

    avastin
    Hi:
    My daughter was diagnosed with Anaplastic Astrocytoma, grade 3 in February 2011. A 2nd opinion in March of this year thought it was Glioblastoma. Either way, the treatment was appropriate. She had surgery, they got 80-90%, radiation and then chemo for 12 months. She had Avastin, Irinetecan and Temodar for the meds. The combo shrunk the area and she remained stable. Before we knew she had a tumor she was also having trouble talking. It is a horrible thing and very scary for them.
    We had an MRI yesterday, but do not know the results yet. I am worried, but trying to be faithful. Last night, she said she was having trouble talking again, can't say the words she wants to say. Oh My! I am trying to remain calm. That was how the whole thing started. She had her last chemo at the end of April this year. I have heard once you stop the chemo it comes back. I pray not. I pray for Life in Abundance for my daughter. She is only 18. I wish you the best. It is a scary, roller coaster ride. Find you faith, it will calm you during difficult times. God Bless you.
    EDna

    Hi there
    I just wanted to let you know that I am praying for you and your daughter. The waiting for the MRI results can sometimes be worse then getting the results. My daughters MRI is coming up in the beginning of June and I am not looking forward to that. Have her doctors talked to her about her end of life wishes?
  • alutiiqmom
    alutiiqmom Member Posts: 256
    momsworld said:

    Hi there
    I just wanted to let you know that I am praying for you and your daughter. The waiting for the MRI results can sometimes be worse then getting the results. My daughters MRI is coming up in the beginning of June and I am not looking forward to that. Have her doctors talked to her about her end of life wishes?

    Hi Tina
    Hi:
    They have not discussed that with her or us. Just the thought of that terrifies me beyond words and I know you know all about that. I think of you often and pray for you and your daughter. We are just trying to look forward until we know otherwise. Love to you and yours. God Bless you Tina.

    Edna
  • cindysuetoyou
    cindysuetoyou Member Posts: 513

    Thank you
    Thank you so much for your kind words. I read it out loud to my husband. They made me smile and cry. And the story of your friend's husband does help. I need to hear survivor stories. And thank you for praying for Finnegan. I will pray for your son as well. Do you have any helpful books that I should read?

    Nicky
    Madison, WI

    How are you doing?
    Hi, Nicky.

    I was looking through these older posts and I saw yours and I wondered how you and your little boy were doing. I hope that he is recovering and that things are looking better for him and for you. Please, if you get a chance, could you let me know how he is doing?

    Love and blessings,
    Cindy
  • cindysuetoyou
    cindysuetoyou Member Posts: 513

    avastin
    Hi:
    My daughter was diagnosed with Anaplastic Astrocytoma, grade 3 in February 2011. A 2nd opinion in March of this year thought it was Glioblastoma. Either way, the treatment was appropriate. She had surgery, they got 80-90%, radiation and then chemo for 12 months. She had Avastin, Irinetecan and Temodar for the meds. The combo shrunk the area and she remained stable. Before we knew she had a tumor she was also having trouble talking. It is a horrible thing and very scary for them.
    We had an MRI yesterday, but do not know the results yet. I am worried, but trying to be faithful. Last night, she said she was having trouble talking again, can't say the words she wants to say. Oh My! I am trying to remain calm. That was how the whole thing started. She had her last chemo at the end of April this year. I have heard once you stop the chemo it comes back. I pray not. I pray for Life in Abundance for my daughter. She is only 18. I wish you the best. It is a scary, roller coaster ride. Find you faith, it will calm you during difficult times. God Bless you.
    EDna

    Hi, Edna
    Hi, Edna.

    Thank you for all the times you've commented on my posts and encouraged me. I really appreciate it!

    How is Sarah doing? I don't know if you posted and I missed it...but I don't remember seeing a post about her MRI or her Pet scan. I thought she just recently had both of those done? I really hope and pray that you received great reports from both of those tests.

    Love and blessings,
    Cindy in Salem, OR
  • corry1964
    corry1964 Member Posts: 4

    Hello
    My story is similar to yours in that I also have AA3. My story is below:

    In 2009 I started having severe headaches. I first noticed what looked like Kaleidoscope shapes in my right eye, and shortly after they would stop I would get nauseous and immediately get a severe headache. This happened again a few days later, so my Husband called our Eye Dr. because it was time for both of us new contacts. They got us in that day, and the Eye Dr. stated she felt I was having Ocular Migraines, I got a new RX for contacts as well as glasses, and we were on our way. Not even a week later I was sick again with a migraine and I went to my Regular Physician who was also a Physician that I had worked in his office over 7 years before I changed jobs. So he knows me personally, and he checked all my reflexes, etc and stated he felt they were Migraines as well; however he gave me a medicine for migraines to take as soon as I started seeing the spots so that it may help reduce the migraine pain when it came on. Then again not even a week later I'm sick and have another headache, and this time my neck is killing me as well and feels knotted up. I again make an appointment with my Personal Dr., and he examines my neck and states that I am having muscle spasms in my neck as well as Stress Migraines. He gave me meds to help with the neck pain, but I am not good on meds, and I had to work, so I only took them at night so it was not really helping that week. I took the next week off work to take the meds and relax per my Husband's instructions :) That week off I was sick 3 of the 7 days. I decided on the Thursday of that week I was scheduled off work that I was going to just go sit at the ER to let them do some kind of test or something because I knew something more had to be going on. That Thursday I was dressed and ready to go then said "I will sit there all day and they may not do anything" So I decided to call my Personal Dr. again, and ask him if he would just schedule me some tests. They office told me he would be out till Tuesday, but they would leave him a message. So I was waiting till Tuesday now. I went back to work the next week, and every time I would stand up I felt I would pass out. Well as fate had it, Monday night my 2 year old woke up crying so I went and laid in her bed to get her back to sleep at about 3 AM. As I laid there with my arm on her getting her back to sleep I felt the worst pain in the front left side of my head. I honestly thought I was having a Brain Aneurysm, and was wondering if I should get my Husband. It eventually eased and made me feel a little less worried about aneurysm. By the time it was time to get up and get dressed; I was nauseous and could not force myself to get dressed for work. My husband said we are going to ER. He took our baby to Pre-School, and came right back and took me to the ER. This was October 20th, 2009. They got me back real quick for an ER, and had me having a CT within like 30 minutes, however ER Dr. said he just wanted to do that since no one else had, but he felt it was just Bilateral Migraines and we would be on our way soon. (Notice this is the third different migraine I have heard in the past couple weeks.) Well within maybe 30 minutes he comes in and says they see something in my left frontal lobe right in the front and did not look to be doing anything but lying right on top of the brain. Not entwined or anything. But that they are not sure what it is. It could be anything from an Infection to a mass. He also stated that there was quite a bit of swelling on my brain as well. He told us they will be coming to get me for an MRI and that they will know more then. About 30 minutes later they have me in MRI, and take me back to ER. No time later he comes in stating there is definitely something there that looks like a mass, and they would like to send me on over to there main facility downtown who has the Neuron Dept. I was admitted to the Main Facility, and they started Steroids immediately to reduce the swelling on the Brain. At first they were talking surgery by the end of the week, however after no headaches at all once Steroid started they released me the second day to continue the steroid to reduce as much swelling for the operation to go more successfully. The did the surgery October 29th, 2009, and when my wonderful surgeon come out to inform my Husband, and Family (I had 49 people in surgery waiting), he stated he felt after looking at it under the microscope it was maybe a Stage 1 or 1.5 tumor. It had a cyst on the front and back of it, and he removed all three due to cyst was made out of same tissue, but they were all just on top of the brain. He stated the tumor was the size of an egg. He stated the final reports would take a few days but he felt confident he got it all, and that it was one that may never grow back and if it did it could take my lifetime to. The MRI the morning after surgery shows he got it all! I was in ICU 2 days and in a regular room 2 days and was released to go home. We went to my follow up on November 11th, 2009 (two days before my 33rd birthday), and the final report states it is Stage III. The surgeon told us he is sending me to UAB in Birmingham, AL within the next two weeks for a second opinion as well as to get a treatment plan together. He stated he was still hopeful they will say it is only a Stage 2 or even the initial thought of Stage 1 or 1.5. At UAB to get the final diagnosis and treatment plan they stated in fact it was a Stage III, and not a Stage 1 or 2 like the surgeon was hoping. I went to UAB and they suggested that I do 6 weeks of radiation and during the 6 weeks of radiation I had to do a low dose of chemo called Temodar every day for the 6 weeks. Before the radiation began, and only a few days after I got back from UAB, I started having seizures. UAB started tapering me off of my steroids, and they tapered me off too quickly which is what we feel caused the seizures to begin. I had over 20 seizures everyday for 6 days. When they finally increased the steroids to where they had it, the seizures went away. Praise God I have not had anymore seizures since then, and I no longer have to take Keppra to prevent seizures. The radiation made me really tired and it also made me lose my hair in a couple of spots. My hair has grown back, however the area that had the direct radiation is still basically bald with thin almost nonexistent hairs. I just part my hair to the other side, and you cannot even tell. Hair is not more precious than life!! I ended the radiation at the beginning of 2010, and once I was through with the radiation, I had to take the Chemo 5/28 days for a year, and they more than tripled the dosage. If I started the chemo on a Monday took it for 5 days, I would not be able to get out of the bed for 7 days. This was the worst part of the cancer treatment for me. It is not the same for everyone; however it was really rough on me. The Dr’s will give you meds to help cope with the nausea, and I was even given Marinol, which is pill form Marijuana. I did not like it and actually just flushed those a while ago. My chemo ended in 01/2011, so I have been off of it for almost a year.
    I have to go to UAB every 3 months for follow ups, but by the Grace of God there has been no reoccurrence. There is a small cyst that has shown back up, and they found it back in 2010, but it has not grown at all, and the tumor site is stable and healing. I just had my last follow up 10/19/11, and all was as good as or if not better than the scan before! Remission for two years on 10/29/11!! Praise God!!!

    I also had a song that came to mind while I was sick. It is "Lord Prepare Me, To Be A Sanctuary, Pure and Holy, Tried and True, and with Thanksgiving, I'll be a LIVING, Sanctuary, For You!” I also have given my testimony at my church, and it is on YouTube as well. Not sure of the link on YouTube, but if I find it I will put it on here. There is not an expiration date on our lives that can be set by any Dr. Our fate is in the hands of the Man above, and everyday I give thanks to God for allowing me another day!!

    AA3 Survivor
    Your story sounds exactly like mine. I was diagnosed with a brain tumor in October 2007. My Dr. believed it was a low grade tumor. It was located on my right frontal lobe. I chose to have surgery a soon as possible. October 31, 2007 I had the tumor removed and a week passed and the day I got my staples out the Dr. called me with the news. Grade 3 Anaplastic Astrocytoma. I had 42 radiation treatments and approx. 12 weeks of chemo (Temodar)All my MRI's since have shown all clear. I can relate to the kaleidoscope vision you had. It was so hard to explain the sensation I was feeling. I had that symptom for many years before I finally tried to explain it to my wife or Dr. It would happen when I was trying to focus on a conversations with a client, converstions with my wife. It just kept happening more and more frequent. It also happened while I was driving. I have explained it as tunnel vision, I was able to function, and I knew it would stop in a few seconds. My doctor said I was having mild seizures. I had major neck pain, muscles knotting up, constant trips to the chiropractor, which didn't help. I have made several bad decisions over the last several years which resulted in divorce and alienation from my children. I remarried 1 year before my diagnosis, and my life could not be better. All things happen for a reason and I see why I went through what I did. I am a better man today because of my cancer. I wouldn't trade my experience for anything. I have not seen my son since he was 12 and he is now 20. I am however walking my beautiful daughter down the isle this July 7th. Our relationship is so strong and I love her so much. Cancer has changed me in so many good ways. I will never question why me. Why not me. Thanks to GOD and Columbus, Ohio Riverside Methodist Hospital and all the doctors and nurses that cared for me for giving me the rest of my life.
  • alutiiqmom
    alutiiqmom Member Posts: 256

    Hi, Edna
    Hi, Edna.

    Thank you for all the times you've commented on my posts and encouraged me. I really appreciate it!

    How is Sarah doing? I don't know if you posted and I missed it...but I don't remember seeing a post about her MRI or her Pet scan. I thought she just recently had both of those done? I really hope and pray that you received great reports from both of those tests.

    Love and blessings,
    Cindy in Salem, OR

    MRI and PETSCAN
    HI Cindy Sue:

    Sarah's May test showed no reoccurrence. I am very thankful. I posted that but I don't think anyone saw it because no one commented.
    I remain faithful and always try and look forward on her life. We try and pray every night at bedtime. We pray for you and David and all of the beautiful families on this website. I pray for peace and no suffering.
    I am so sorry that you and David have been suffering so. I have no words to take your pain away, but I will be your prayer warrior. I will send you blessings every day so please watch for them.
    I am sorry that you had to give up David's apartment. I am so thankful that you can be with him through all of this. You are a wonderful Mother. Enjoy every minute and find the good every day with David.
    I remain in faith.
    Love, Edna and Sarah
  • cindysuetoyou
    cindysuetoyou Member Posts: 513

    MRI and PETSCAN
    HI Cindy Sue:

    Sarah's May test showed no reoccurrence. I am very thankful. I posted that but I don't think anyone saw it because no one commented.
    I remain faithful and always try and look forward on her life. We try and pray every night at bedtime. We pray for you and David and all of the beautiful families on this website. I pray for peace and no suffering.
    I am so sorry that you and David have been suffering so. I have no words to take your pain away, but I will be your prayer warrior. I will send you blessings every day so please watch for them.
    I am sorry that you had to give up David's apartment. I am so thankful that you can be with him through all of this. You are a wonderful Mother. Enjoy every minute and find the good every day with David.
    I remain in faith.
    Love, Edna and Sarah

    Thank you
    Thank you very much, Edna. I really appreciate your prayers. We have been in the ER all night because David had a pretty bad seizure. We are now waiting for the results from David's CT and chest X-ray. It's only been 13 days since we were here for a seizure. I think that David is fighting an infection or a cold or still battling pneumonia and that's what brought on a seizure.

    Even though our lives are filled with pain and sorrow, our faith and trust in God remains. Things didn't go the way I hoped and prayed and begged God for, but I still trust God with all of my heart and I have no doubts regarding His unfailing love. I know that eternity is better than this life. But right now all I can see is David's condition, and the pain and heartbreak is overwhelming. But I'm not done fighting, and neither is David. It might be a losing battle, but we're not giving up just yet.

    I am so glad and I'm rejoicing with you that your beautiful daughter Sarah is doing so well! I've read several accounts about people living long with AA3 and I'm praying and believing that Sarah is going to do the same! I hope you and your family have a wonderful, blessed summer.

    Love and blessings,
    Cindy in Salem, OR
  • connsteele
    connsteele Member Posts: 232

    MRI and PETSCAN
    HI Cindy Sue:

    Sarah's May test showed no reoccurrence. I am very thankful. I posted that but I don't think anyone saw it because no one commented.
    I remain faithful and always try and look forward on her life. We try and pray every night at bedtime. We pray for you and David and all of the beautiful families on this website. I pray for peace and no suffering.
    I am so sorry that you and David have been suffering so. I have no words to take your pain away, but I will be your prayer warrior. I will send you blessings every day so please watch for them.
    I am sorry that you had to give up David's apartment. I am so thankful that you can be with him through all of this. You are a wonderful Mother. Enjoy every minute and find the good every day with David.
    I remain in faith.
    Love, Edna and Sarah

    hooray for the good news
    Just wanted to say that I am so happy to hear of Sarah's good MRI report. That is wonderful and I hope and pray that all further tests are the same. Your story gives hope for all those who are facing this terrible disease. Even though our son didn't survive, it gladdens my heart when I hear of someone who is beating this.
    Connie
  • alutiiqmom
    alutiiqmom Member Posts: 256

    Thank you
    Thank you very much, Edna. I really appreciate your prayers. We have been in the ER all night because David had a pretty bad seizure. We are now waiting for the results from David's CT and chest X-ray. It's only been 13 days since we were here for a seizure. I think that David is fighting an infection or a cold or still battling pneumonia and that's what brought on a seizure.

    Even though our lives are filled with pain and sorrow, our faith and trust in God remains. Things didn't go the way I hoped and prayed and begged God for, but I still trust God with all of my heart and I have no doubts regarding His unfailing love. I know that eternity is better than this life. But right now all I can see is David's condition, and the pain and heartbreak is overwhelming. But I'm not done fighting, and neither is David. It might be a losing battle, but we're not giving up just yet.

    I am so glad and I'm rejoicing with you that your beautiful daughter Sarah is doing so well! I've read several accounts about people living long with AA3 and I'm praying and believing that Sarah is going to do the same! I hope you and your family have a wonderful, blessed summer.

    Love and blessings,
    Cindy in Salem, OR

    keep fighting
    Cindy Sue:

    I am sorry the you are still struggling with those seizures. I like that you wrote that you and David will keep fighting. Fight every day! I am so glad that you have the strength and resolve to do that. I am sure that fighting spirit of yours helps David more than you know. Keep your faith. I feel like we do not always know why things are happening the way they are or even what will happen next. But, we know that God is good. Enjoy every minute together. God Bless you Cindy Sue and David.

    Love, Edna

    EAM
    Expect A Miracle!
  • alutiiqmom
    alutiiqmom Member Posts: 256

    hooray for the good news
    Just wanted to say that I am so happy to hear of Sarah's good MRI report. That is wonderful and I hope and pray that all further tests are the same. Your story gives hope for all those who are facing this terrible disease. Even though our son didn't survive, it gladdens my heart when I hear of someone who is beating this.
    Connie

    thank you connie
    Connie:

    Thank you for the kind words. We are relieved every time. But, I still become afraid. I try not to think of what might happen. Worry just robs you of today doesn't it? Thanks for staying in touch with everyone. I hope that you and your husband are muddling through your grief together. I cannot imagine Connie. I think of you often. I think of everyone on this site and send them God's blessings. Take Care Connie.

    Love, Edna
  • cindysuetoyou
    cindysuetoyou Member Posts: 513

    keep fighting
    Cindy Sue:

    I am sorry the you are still struggling with those seizures. I like that you wrote that you and David will keep fighting. Fight every day! I am so glad that you have the strength and resolve to do that. I am sure that fighting spirit of yours helps David more than you know. Keep your faith. I feel like we do not always know why things are happening the way they are or even what will happen next. But, we know that God is good. Enjoy every minute together. God Bless you Cindy Sue and David.

    Love, Edna

    EAM
    Expect A Miracle!

    Thank you
    Thank you, Edna.

    I just wanted to let you know that David had an Avastin infusion on Tuesday, and this time it seemed to help. David is using his left side a little more, and he even sat outside in the sun with some family and friends this afternoon. Thats a big improvement! David also wanted to go out to dinner to one of his favorite places, so our family all went and we had a lovely time. It wiped David out, but he had a good time and I'm so grateful for the day we had today.

    We will be getting an MRI the first week in July. I'm trying to mentally prepare myself, but it's hard. I've always hated and dreaded MRIs and I'm really struggling with fear about what this one will show.

    I'm continuing to pray for you and Sarah! :)

    Love and blessings,
    Cindy
  • caroline_v
    caroline_v Member Posts: 1
    Hi,
    My name is Caroline

    Hi,
    My name is Caroline VanDeMark and I am 21 years old. I recently got a CAT scan because my head was hurting a lot and they found a tumor. Thankfully it was operable, so the surgeons were able to remove the whole tumor. And it is now diagnosed as a small cell glioblastoma. The neuro oncologist I am with now at Hackensack Hospital in NJ said it will be treatable in my case because of my youth, health and strength. Next week I am starting both radiation and chemotherapy. I would like to hear of your story. I'm sure it will give me hope!
  • ugne
    ugne Member Posts: 1
    astrocytoma grade4
    Hi,

    My cousin has 4th grade astrocytoma(brain tumor), had a lot of treatments, chemotherapy etc.is still getting worse its growing really fast,. she is at that stage now that she is not talking.
    What have you done to survive your brain tumor and at what stage you where?
    Thanks for your answer

    Sincerely
    Ugne