Astrocytoma Grade III-Survivor

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  • alutiiqmom
    alutiiqmom Member Posts: 256
    Eng said:

    If you like please give me
    If you like please give me your personal email address and I will give you very very good info and names to help you with the type of issue you and your family have. My brother, 23 years old, has exactly same thing and ONLY ONLY 1 doc could save his life every other hospitals across North America could not take his tumor out.

    email
    Hi:

    Thanks for your email. I am very open to hear the information you have about your brother's healthcare. God bless you.

    Edna
  • alutiiqmom
    alutiiqmom Member Posts: 256
    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

    Thanks for sharing
    Hi:

    Thanks for sharing your story and giving others hope! We need to hear of others overcoming this dreadful diease. How long will you take the Temodar? Where do you receive treatment? Sending God's blessings to you.

    Edna
  • paulajuffer
    paulajuffer Member Posts: 1

    Hi !
    Thank you for trying to help others !
    My mother have AA3 and she went operation now she is almost normal !
    But need to go on radiation and I want to ask you if you know some information how to fight against this terrible illness ?
    Thanks forward !

    hi
    I'm new to this site, just read it all and all of your thoughts and experiences gave me such a new look on this deseese. My mom was diagnose with AA3 week ago. She had tumor 3x5 centimeters that was removed 3 weeks ago. I looked into statisticks it doesn't look promising but reading all your comments is so encouraging! Is there anybody out there that beat the 10 years mark?
    My mom's tumor was all remover she will start radiotherapy soon. She lives in Poland and the health care system is not as advanced there as here. Everybody that went through AA3 is talking about chimo- temodar. Is that standard for US or anyboday is doing radiation only. Is gamma knife in any use in that situation?
    Thank you in advance.
  • Finnegans Mom
    Finnegans Mom Member Posts: 12
    Thalamic tumor?
    Hi,
    My son Finnegan has recently been diagnosed with a grade III Anaplastic Astrocytoma located in his thalamus. He is 16 months old. He has already had two surgeries in which they removed 75% of the tumor. He is scheduled to have one more surgery, chemotherapy and possibly radiation. We have been told that his tumor is extremely rare and that children who are survivors cannot be found. I am searching for survivors of this type of cancer. I am searching for hope. My husband and I are so scared right now. I need to hear survivor stories. I need to believe that he will survive this. The Dr.'s say that they wouldn't be advising all this unless they thought he may survive. Are there any grade III anaplastic astrocytoma thalamic brain tumor survivors out there?

    Thank you,
    Nicky Mondroski
  • ForHope
    ForHope Member Posts: 16

    Thalamic tumor?
    Hi,
    My son Finnegan has recently been diagnosed with a grade III Anaplastic Astrocytoma located in his thalamus. He is 16 months old. He has already had two surgeries in which they removed 75% of the tumor. He is scheduled to have one more surgery, chemotherapy and possibly radiation. We have been told that his tumor is extremely rare and that children who are survivors cannot be found. I am searching for survivors of this type of cancer. I am searching for hope. My husband and I are so scared right now. I need to hear survivor stories. I need to believe that he will survive this. The Dr.'s say that they wouldn't be advising all this unless they thought he may survive. Are there any grade III anaplastic astrocytoma thalamic brain tumor survivors out there?

    Thank you,
    Nicky Mondroski

    Finnegans-Mom
    I can't imagine how scared you must be about your baby's diagnoses. This definitely is a life changing experience. I just wanted to tell you that I'm sure there are survivors out there for all sorts of things that our human brain has long deemed over. Don't give up hope and keep fighting. Your baby will have a fighting chance. My brother has grade IV GBM and because of how fast it had grown they initially thought few weeksat the most but we just celebrated his one year old anniversary and he is living life to the fullest so keep believing. I'll keep you in my prayers

    ForHope
  • Finnegans Mom
    Finnegans Mom Member Posts: 12
    ForHope said:

    Finnegans-Mom
    I can't imagine how scared you must be about your baby's diagnoses. This definitely is a life changing experience. I just wanted to tell you that I'm sure there are survivors out there for all sorts of things that our human brain has long deemed over. Don't give up hope and keep fighting. Your baby will have a fighting chance. My brother has grade IV GBM and because of how fast it had grown they initially thought few weeksat the most but we just celebrated his one year old anniversary and he is living life to the fullest so keep believing. I'll keep you in my prayers

    ForHope

    ForHope
    Thank you so much for your comments and kind words. I send you my love.
  • Finnegans Mom
    Finnegans Mom Member Posts: 12
    ForHope said:

    Finnegans-Mom
    I can't imagine how scared you must be about your baby's diagnoses. This definitely is a life changing experience. I just wanted to tell you that I'm sure there are survivors out there for all sorts of things that our human brain has long deemed over. Don't give up hope and keep fighting. Your baby will have a fighting chance. My brother has grade IV GBM and because of how fast it had grown they initially thought few weeksat the most but we just celebrated his one year old anniversary and he is living life to the fullest so keep believing. I'll keep you in my prayers

    ForHope

    ForHope
    Thank you so much for your comments and kind words. I send you my love.
  • cindysuetoyou
    cindysuetoyou Member Posts: 513

    ForHope
    Thank you so much for your comments and kind words. I send you my love.

    me too
    My heart felt broken for you when I read your pleas for information for your little baby. I cannot imagine your pain. I feel bad enough with my 28 year old son....but I think a mother's love for a baby is so fierce and protective...and a little baby is so helpless and hasn't even started to have their life....I am so sorry beyond words that you are facing this.

    I don't know if this will help you very much...but the doctors don't know everything. I have a good friend whose husband was diagnosed with an AA3 and they told her that he would live 6 months, maybe a year at the most. He lived for 24 years and died recently at 58 years of age. He died of congestive heart failure, not from his brain tumor. He also had a recurrence about 10 years ago and battled back from that.

    So sometimes the doctors don't get it right. I also believe in miracles. I am praying for a miracle for my son and I will pray for that until one of us is no longer drawing breath. One of our doctors told us as long as you are breathing, there is hope.

    Love, blessings, peace and strength to you. I will be praying for little Finnegan too.
    Cindy in Salem, OR
  • Finnegans Mom
    Finnegans Mom Member Posts: 12

    Help I love my dad
    My dad had a aa removed at johns Hopkins in march, he had chemo and radiation, and clean. MRI, we travel to md from Arkansas. I am an adult and an only child. Dad has a follow up December 5 with an MRI, the anxiety level with me is intense, I was doing ok, now I feel it is unmanageable. My parents do not know my extreme fear. I have OCD which makes it all worse. God has been good, but I feel like I am going to explode and what if it returned....I now hate seeing anything to do with the holidays...I need help I feel so alone, I know it is my dad that really needs the help, but what if I have a breakdown..p,ease email me if you want to talk...

    I hope you are doing ok
    You can get through this. Have you seen a counselor? That may help. My son has a grade 3 thalamic tumor and I suffer from severe anxiety and I know we can get through this. Try meditation, prayer, exercise, deep breathing or learn how to knit. All these things help me.

    Nicole (Finnegan's Mom)
  • Finnegans Mom
    Finnegans Mom Member Posts: 12

    me too
    My heart felt broken for you when I read your pleas for information for your little baby. I cannot imagine your pain. I feel bad enough with my 28 year old son....but I think a mother's love for a baby is so fierce and protective...and a little baby is so helpless and hasn't even started to have their life....I am so sorry beyond words that you are facing this.

    I don't know if this will help you very much...but the doctors don't know everything. I have a good friend whose husband was diagnosed with an AA3 and they told her that he would live 6 months, maybe a year at the most. He lived for 24 years and died recently at 58 years of age. He died of congestive heart failure, not from his brain tumor. He also had a recurrence about 10 years ago and battled back from that.

    So sometimes the doctors don't get it right. I also believe in miracles. I am praying for a miracle for my son and I will pray for that until one of us is no longer drawing breath. One of our doctors told us as long as you are breathing, there is hope.

    Love, blessings, peace and strength to you. I will be praying for little Finnegan too.
    Cindy in Salem, OR

    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
  • 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,