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Astrocytoma Grade III-Survivor

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  • KellyAK2011
    KellyAK2011 Member Posts: 20

    i am 21 and i was diagnozed
    i am 21 and i was diagnozed with astro.. grade 2 in dec 2010 and i have one question to mate which is holding with it over 10 years do You smoke cannabis mate ? I am asking because i am an adict of cannabis and about 6 month before diagnoze i have stopped smoking weed and after a month since i stoped smoking i started to getting them weard fellings and tunnel vision or whatever You call it. I am just thinking is there some chance that weed had something to do with it ?

    Thank You

    I doubt it
    I don't think there is any evidence whatsoever that states smoking cannabis has anything at all to do with brain tumors - either positive or negative. I have read some research on the health benefits of ingesting cannabis. Taking it into your lungs is not good for you, but it likely has nothing whatsoever to do with developing a brain tumor.

    Kelly
  • corals505
    corals505 Member Posts: 2
    Toshy said:

    30 + years!
    Adding my support and encouragement :)

    I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem (Astrocytoma on floor of 4th ventricle). I had radiation treatments in late 70's, chemo in early 80's. A couple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

    I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

    Surgery in 1981, Still Around in 2011
    An anaplastic astrocytoma was found not in my brain, but inside my spinal cord (T9-L2) when I was 27 years old in 1981. I'll put the long story on my profile, but the short story is that I had surgery to cut out the tumor followed by 22 treatments of radiation therapy to kill off the remaining cells that adhered to the left side of my spinal cord. I was in the hospital for two months and because the surgeon had to cut into the spinal cord to get at the tumor, I had paralysis of the legs. With the skill of a terrific surgeon at NYU (who is still practicing today) and a team of wonderful physical therapists, I regained my ability to walk and have lived a healthy life for 30 years. I did not have chemotherapy. It took about a year to be walking normally again, but the tumor never came back. All of the doctors, including my neurosurgeon, were amazed.

    I just wanted to write in and encourage people. I want to let you know that an anaplastic astrocytoma is not a death sentence. My mother is 95 and I plan to live that long as well. Best wishes to all of you.
  • chicken2799
    chicken2799 Member Posts: 105
    RCOLUCCI said:

    IT'S ENCOURAGING TO HEAR
    IT'S ENCOURAGING TO HEAR THAT YOU ARE A TEN YEAR SURVIVOR. MY DAUGHTER WAS DIAGNOSED WITH A GRADE 2 ASTROCYTOMA IN THE LEFT FRONTAL LOBE ALSO A LITTLE OVER 3 YEARS AGO. SHE HAD A CRANEOTOMY AND MRI'S AT FIRST EVERY 3 MONTHS THEN 6 MONTHS UNTIL DECEMBER OF LAST YEAR IT GREW BACK.THEN ANOTHER SURGERY IN APRIL OF THIS YEAR. IT WAS UPGRADED TO STAGE 3 SO THEY DECIDED TO DO RADIATION THEN CHEMO. SHE IS CURRENTLY DOING CHEMO (TEMADOR) FOR 7 DAYS EACH MONTH UNTIL JUNE OR SO...DOCTORS RECOMMENDED 12 TO 14 MONTHS OF TREATMENT. DOCTORS GAVE HER A STATISTICAL 3 TO 5 YEAR SURVIVAL. SHE HAS 2 SONS 2YRS AND 5YRS. DO YOU HAVE KIDS AND DID YOU HAVE A SIMILAR SITUATION? WERE YOU GIVEN THE SAME SURVIVAL RATE? DO YOU HAVE TO TAKE ANTI-SIEZURE MEDS? DID OR DO YOU HAVE ANY COGNITIVE AFFECTS?

    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!!
  • lawslegal said:

    My son is recovering from an astrocytoma
    Hi, I am happy that your daughter is doing well.

    Five years ago, June 12, 2004, my then 13 year old son got suddenly ill and we rushed him to the hospital finding that he had a ruptured brain tumor. We then found out it was an astrocytoma. It is a long story but the surgeon did remove the entire tumor and he needed no further treatment. After his surgery, however, he had a stroke. After years of therapy he walks with a walker and cane. Graduated high school on June 12, 2009 and is getting ready for college. He just had his 5 year MRI and it was clean. It has been a long and hard road and he is doing great. I have just finished a book called, Michael's Journey and it should be out by Labor Day. I wrote the book for people like you. It is very inspirational.

    I wish your daughter and your family the best.

    Sincerely, Laura, Michael's Mom

    Laura
    Hi Laura, how are you?

    My name is Margaret I live in Brazil, I read his statement on a website and would like to speak to you. I read that his son had a brain tumor and thank God he is fine .. He improved the aftereffects of a stroke?

    My son operated a grade two astrocytoma in March this year, he stayed with sequels, this was without vision and with hormonal problems.
    I'm very nervous, sad, looks like I'm dreaming ...

    I'm using Google translator, I'm sorry because I can not speak English.

    Do you have MySpace or Facebook?

    May God protect your child, and if possible news.

    kisses

    Margarete
  • my husband has the same..........
    As of 11/23/11 the doctors at the VA hospital told us that they can not determine if the swelling in brain is just that or if it is the tumor its self.They informed us to seek a neurosurgion cuz they can not do anything more. My husband is giving up!!!!! As for me i am not. Any advice
  • alutiiqmom
    alutiiqmom Member Posts: 256

    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!!

    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
  • chicken2799
    chicken2799 Member Posts: 105

    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

    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?)
  • alutiiqmom
    alutiiqmom Member Posts: 256

    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?)

    thank you Michelle
    Hi:
    Sarah was diagnosed in February 2011, when she was 17. She is now 18. She had brain surgery, where they got 85-90% of it, 6 weeks of radiation combined with the Temodar. Then she had one month off and then we put a port in her chest. 2x a month she has an infusion of Irinetecan and Avastin. During the last infustion she takes Temodar for five days that week. It is supposed to be 400mg a day. These last two months we reduced it to help her feel better. It did make her feel better. The neuro-oncologist wants us to stop the Temodar because she says there is no real proof that it works past 6 months. She says it only helps 1 in 10 people. We are keeping it going with our oncologist in Alaska. I just feel sick with worry when the neuro-oncologist tells us that. She wants us to think about our daughter's quality of life and keep talking about the possibility of a reoccurrence. All I think about is my daughter's life! Our Life! I am very thankful you shared your story to keep hope alive for me and all of the other patients and family members. I will pray for you and thank you for praying for Sarah. God is good! I know he is. I will continue to claim victory for Sarah and all people fighting this dreadful illness. God Bless you Michelle.
    Edna
  • Raani01
    Raani01 Member Posts: 70

    my husband has the same..........
    As of 11/23/11 the doctors at the VA hospital told us that they can not determine if the swelling in brain is just that or if it is the tumor its self.They informed us to seek a neurosurgion cuz they can not do anything more. My husband is giving up!!!!! As for me i am not. Any advice

    Don't give up
    Hi,
    Mayo clinic at Rochester ,MN has great doctors.
  • alutiiqmom
    alutiiqmom Member Posts: 256

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

    No
    Hi:

    No she doesn't. She won't even use it to help the nausea. I hope you are doing well and getting better. God Bless.
    Edna
  • Kimberlyann72
    Kimberlyann72 Member Posts: 6
    Raani01 said:

    Don't give up
    Hi,
    Mayo clinic at Rochester ,MN has great doctors.

    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...
  • Susan S
    Susan S Member Posts: 3

    Supplements for rad/chemo
    Michelle, My husband was diagnosed with Astrocytoma Grade II. His surgery was Sept 10, 2009, at Thomas Jefferson. We have been working with a nutritionist from Utah, Jeanne Wallace. You can look her up on the internet. He only had radiation, but made it thru with minimal side effects we believe largely due to the supplements Jeanne had him taking. Also she recommended that he exercise 20 - 30 min prior to his treatment to have the blood flow help the radiation treatments. He had 27 treatments the last day was the day before Thanksgiving. On Dec 3 we took a much needed vacation to Disney! He did great. His biggest problem was some nausea caused by the radiation. Although you want to stay on a healthy diet, at this time it is important that you do not get ill on healthy food because you will not ever want to eat it again. This is called the "scape goat" effect. He took boswellia and curcumin, shark liver oil, and fish oil and did not need any steroids. I highly recommend to anyone going thru this to get a good nutritionist. Jeanne has specialized in nutrition for brain tumors which is why we chose her. Since we live in PA and she is in Utah our consults have been via phone and e-mail base on specific blood tests.

    May God be with you and your family at this time. It is a total emotional rollar coaster. Don't be afraid to research things on your own. I haven't stopped since we found out Bob had a tumor on Aug 16, 2009. I read in a book to use the 333 rule. Get three opinions, make sure your medical staff has at least three years experience, and make sure the medical equipment is three years old or newer.

    supplements for radiation
    I hope Michelle is doing well. I was diagnosed in the summer with a low grade glioma. I'm just starting down this road and have hooked up with a naturopath. You might like the book "Life over Cancer" by Dr. Keith Block. He has used an integrative approach to cancer treatment. He treats the whole body: physical, spiritual, emotional....
    I like the 333 rule. I'll have to remember that.
  • chicken2799
    chicken2799 Member Posts: 105
    Susan S said:

    supplements for radiation
    I hope Michelle is doing well. I was diagnosed in the summer with a low grade glioma. I'm just starting down this road and have hooked up with a naturopath. You might like the book "Life over Cancer" by Dr. Keith Block. He has used an integrative approach to cancer treatment. He treats the whole body: physical, spiritual, emotional....
    I like the 333 rule. I'll have to remember that.

    Susan S
    I am doing well, and I have had a clean MRI for 2 years and almost 3 months. I go for a follow up MRI on 01/18/12, and I pray every day that it will still be clear. I just started getting back on this site a couple weeks ago, and reading old posts really shows me how far I have come in these 2 years. Time certainly flies by. I am going to look for that book so that I can read it! I am open to anything that will keep me healthy for my daughter who is 4. Please keep me posted, and I will keep you in my prayers.

    Thoughts and Prayers,

    Michelle
    Mobile, Al
  • Eng
    Eng Member Posts: 11

    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

    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.
  • cecilp
    cecilp Member Posts: 1
    RCOLUCCI said:

    IT'S ENCOURAGING TO HEAR
    IT'S ENCOURAGING TO HEAR THAT YOU ARE A TEN YEAR SURVIVOR. MY DAUGHTER WAS DIAGNOSED WITH A GRADE 2 ASTROCYTOMA IN THE LEFT FRONTAL LOBE ALSO A LITTLE OVER 3 YEARS AGO. SHE HAD A CRANEOTOMY AND MRI'S AT FIRST EVERY 3 MONTHS THEN 6 MONTHS UNTIL DECEMBER OF LAST YEAR IT GREW BACK.THEN ANOTHER SURGERY IN APRIL OF THIS YEAR. IT WAS UPGRADED TO STAGE 3 SO THEY DECIDED TO DO RADIATION THEN CHEMO. SHE IS CURRENTLY DOING CHEMO (TEMADOR) FOR 7 DAYS EACH MONTH UNTIL JUNE OR SO...DOCTORS RECOMMENDED 12 TO 14 MONTHS OF TREATMENT. DOCTORS GAVE HER A STATISTICAL 3 TO 5 YEAR SURVIVAL. SHE HAS 2 SONS 2YRS AND 5YRS. DO YOU HAVE KIDS AND DID YOU HAVE A SIMILAR SITUATION? WERE YOU GIVEN THE SAME SURVIVAL RATE? DO YOU HAVE TO TAKE ANTI-SIEZURE MEDS? DID OR DO YOU HAVE ANY COGNITIVE AFFECTS?

    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
  • msjadeja
    msjadeja 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

    help
    hi, my mother having atrocytoma grade-4. please help.......what we have to do?
    my mail : [email protected]
  • 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

    hello my name is Jackie and
    hello my name is Jackie and i had aa3 initally in 1/28/11 they gave me a full resection, and temador and radiation. By the next nov. i was in surgery. He said they came out with a fairly new drug avastin, but he only wanted me on it if the temador stopped working so unless I got too sick to stick with the temador bc it had better results.
  • BOSBEK said:

    Grade III Astrocytoma
    Thanks for the encouragement. My husband is being treated at Mass General Hospital. I must say that everyone there has been wonderful. Next Tuesday he will have the last of 33 radiation treatments. He has been taking a low dose of Temodar to help the radiation. He will then rest for four weeks and and begin a double dose of temodar 5 daysfollowed by 23 days off and that dosage will continue for a year. Stevens' tumor was in both the left frontal and temporal lobes. He had a partial resection. Have you had any recurrences in that time? What was your treatment regimen?
    Thanks for your help!
    Catherine

    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
  • 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.

    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
  • gvillek said:

    Hello, first of all thank you for telling others about your story. My sister who is 26 years old and is fighting for her life. She also has Anoplastic Astroyctoma – Level 3. She has two small children and I live 90 miles away. I can't express the hope it give me that there are individuals that have survived this cancer! I have been searching for ways to encourage my sister not to give up.

    hey
    Tell your sister I survived it twice and im still going strong
  • 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