Astrocytoma Grade III Survivor Here To Help

survivormannc
survivormannc Member Posts: 17
edited January 2012 in Brain Cancer #1
Hello all. I have helped the ACS for several years now and I am looking to help people specifically with brain cancer. I will be a 5 year survivor in March of 2012. I believe this is my calling to help people who are going through such a difficult thing. Anything at all I can do to help please let me know whether it be to answer questions, give advice or opinions or just be a someone to talk to.
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Comments

  • connsteele
    connsteele Member Posts: 232
    #2
    Welcome to this site. And
    Welcome to this site. And glad to see that there is a long-term survivor who is willing to help. Could you please give a little more of your experience, ie, type of brain tumor, grade, and treatments you had?
  • papa joe
    papa joe Member Posts: 2
    #3
    Hi,
    Just a quick question
    Hi,
    Just a quick question my Dad is also a AA3 cancer survivor 17 months now and he is still taking temodar. Did you use this type of chemo also? if so how long?.

    Thanks,
    Sandi
  • survivormannc
    survivormannc Member Posts: 17
    #4
    connsteele said:

    Welcome to this site. And
    Welcome to this site. And glad to see that there is a long-term survivor who is willing to help. Could you please give a little more of your experience, ie, type of brain tumor, grade, and treatments you had?

    Welcome to this site. And
    I was 26 when I had a seizure while working out. I went to the doc and was misdiagnosed as having a stroke. I took this info to my doc along with the x-rays and he referred me to a neurologist who broke the news to me. I had and Astrocytoma Grade III. After the first seizure i started having mini seizures every 15-20 minutes so immediate surgery was necessary. Two weeks after surgery I started radiation. Then started chemo for 9 months at the highest dose possible. On March 5th of 2012 I will be a 5 year survivor!
  • survivormannc
    survivormannc Member Posts: 17
    #5
    papa joe said:

    Hi,
    Just a quick question
    Hi,
    Just a quick question my Dad is also a AA3 cancer survivor 17 months now and he is still taking temodar. Did you use this type of chemo also? if so how long?.

    Thanks,
    Sandi

    Hi, Just a quick question
    I did use Temodar for 9 months. It made me really sick on my stomach so all I could do all week was lay around. Then I had 3 weeks off to recover. If it wasn't for zofran I don't see how I could have gotten through that. I am thankful however for that drug because I could take it at home and not have to sit in a chemo room for hours on end. Has he been on it the entire 17 months?
  • survivormannc
    survivormannc Member Posts: 17
    #6
    survivormannc said:

    Welcome to this site. And
    I was 26 when I had a seizure while working out. I went to the doc and was misdiagnosed as having a stroke. I took this info to my doc along with the x-rays and he referred me to a neurologist who broke the news to me. I had and Astrocytoma Grade III. After the first seizure i started having mini seizures every 15-20 minutes so immediate surgery was necessary. Two weeks after surgery I started radiation. Then started chemo for 9 months at the highest dose possible. On March 5th of 2012 I will be a 5 year survivor!

    Welcome to this site. And
    My surgeon was able to resect what he said was 100% of the tumor which I am thankful for, a lot of people aren't that blessed. It was in my left frontal lobe. It was so large that it did get into the emotion section and was very near the section that controls my ability to speak. Again there I was lucky as when I had the first seizure I lost the ability to speak due to the tumor pressing on that section with such pressure.
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #7
    survivormannc said:

    Welcome to this site. And
    My surgeon was able to resect what he said was 100% of the tumor which I am thankful for, a lot of people aren't that blessed. It was in my left frontal lobe. It was so large that it did get into the emotion section and was very near the section that controls my ability to speak. Again there I was lucky as when I had the first seizure I lost the ability to speak due to the tumor pressing on that section with such pressure.

    left frontal lobe and speech
    Hi:
    My 18 year old daughter's AA3 was also in her left frontal lobe. Before we knew she had the tumor she loosing her ability to speak, but we did not understand what was going on. We never saw her have a seizure, but she was having silent ones, just zoning out. Anyway, they only resected 85-90% of it. The surgery left her with quite a speech impairment. She is doing speech therapy. Did you have a speech impairment and if you did, how are you doing now?
    Also, what was your chemo and how long did you take it? Where was your hospital? Thanks for helping others and giving hope. God Bless.

    Edna
  • Eng
    Eng Member Posts: 11
    #8
    survivormannc said:

    Hi, Just a quick question
    I did use Temodar for 9 months. It made me really sick on my stomach so all I could do all week was lay around. Then I had 3 weeks off to recover. If it wasn't for zofran I don't see how I could have gotten through that. I am thankful however for that drug because I could take it at home and not have to sit in a chemo room for hours on end. Has he been on it the entire 17 months?

    My brother, now 23, was
    My brother, now 23, was diagnosed with Brain tumor last March. He got a seizure while he was playing tennis at his university. It was a huge surprise as I am sure it is to everyone else. He saw the Neuro surgery next day and they proposed surgery to be his best options. Two weeks later, he had the surgery. What a experience!!! My brother made a decision on the surgery based on his doc's advise that at least %80 will be removed. They opened up and only had a biopsy done. Horrifying!!!

    So, the researched we did before the surgery, i guess was not enough. We reached out side of Canada and we landed in Germany.

    Long story short, The doc in Germany, who I would say first God and second that doc gave life to my brother. The doc in Germany, removed the tumor 100% with no deficit at all. They performed functional MRI first and based on that did the surgery. His surgery took 12 hours and he had 4 MRIs done during the surgery to ensure 100 percent is removed.

    In Canada, they told us is a grade 2 astrocytoma and that is because they only took a small portion and then they recommended a radiation.

    In Germany, they tested the whole tumor and it is a grade 3. He has started his radiation and he has 2 more weeks to go.

    He is in a very good shape and in fact almost every weekend he travels to a city around the city he is now.

    P.S his tumor was very large, larger than an orange and located on the left side. It's amazing when you see the MRI images now.

    We are thankful!!!
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #9
    Eng said:

    My brother, now 23, was
    My brother, now 23, was diagnosed with Brain tumor last March. He got a seizure while he was playing tennis at his university. It was a huge surprise as I am sure it is to everyone else. He saw the Neuro surgery next day and they proposed surgery to be his best options. Two weeks later, he had the surgery. What a experience!!! My brother made a decision on the surgery based on his doc's advise that at least %80 will be removed. They opened up and only had a biopsy done. Horrifying!!!

    So, the researched we did before the surgery, i guess was not enough. We reached out side of Canada and we landed in Germany.

    Long story short, The doc in Germany, who I would say first God and second that doc gave life to my brother. The doc in Germany, removed the tumor 100% with no deficit at all. They performed functional MRI first and based on that did the surgery. His surgery took 12 hours and he had 4 MRIs done during the surgery to ensure 100 percent is removed.

    In Canada, they told us is a grade 2 astrocytoma and that is because they only took a small portion and then they recommended a radiation.

    In Germany, they tested the whole tumor and it is a grade 3. He has started his radiation and he has 2 more weeks to go.

    He is in a very good shape and in fact almost every weekend he travels to a city around the city he is now.

    P.S his tumor was very large, larger than an orange and located on the left side. It's amazing when you see the MRI images now.

    We are thankful!!!

    speech?
    Hi Eng:

    My daughter's tumor was also on the left side, but I do not believe it was that large. How is your brother's speech? My daughter has a speech impairment from her tumor and surgery. What a drag. She is completing her chemo now. It is a rough road. I send you God's blessings from Alaska.
    Edna
  • connsteele
    connsteele Member Posts: 232
    #10
    Eng said:

    My brother, now 23, was
    My brother, now 23, was diagnosed with Brain tumor last March. He got a seizure while he was playing tennis at his university. It was a huge surprise as I am sure it is to everyone else. He saw the Neuro surgery next day and they proposed surgery to be his best options. Two weeks later, he had the surgery. What a experience!!! My brother made a decision on the surgery based on his doc's advise that at least %80 will be removed. They opened up and only had a biopsy done. Horrifying!!!

    So, the researched we did before the surgery, i guess was not enough. We reached out side of Canada and we landed in Germany.

    Long story short, The doc in Germany, who I would say first God and second that doc gave life to my brother. The doc in Germany, removed the tumor 100% with no deficit at all. They performed functional MRI first and based on that did the surgery. His surgery took 12 hours and he had 4 MRIs done during the surgery to ensure 100 percent is removed.

    In Canada, they told us is a grade 2 astrocytoma and that is because they only took a small portion and then they recommended a radiation.

    In Germany, they tested the whole tumor and it is a grade 3. He has started his radiation and he has 2 more weeks to go.

    He is in a very good shape and in fact almost every weekend he travels to a city around the city he is now.

    P.S his tumor was very large, larger than an orange and located on the left side. It's amazing when you see the MRI images now.

    We are thankful!!!

    So glad to hear about your
    So glad to hear about your brother's success. Here's hoping and praying that it continues. We live in the U.S. (Ohio) where our son (AA3 dx4-13-11, age 34)is also getting treatment. He is on a chemo regimen right now. I'm curious: how does one go about getting a doctor/surgeon located in Germany (or someone out of the country)? Our son's medical insurance is an HMO, so it's needless to say, a doc in Germany would be out of his network. Does Canadian insurance pay for treatment out of the country?

    Your surgeon sounds amazing. The surgeon who operated on our son only removed enough tumor to get a biopsy, so we would be interested to know if there is another one willing/capable of removing the entire tumor. Thanks, Connie
  • survivormannc
    survivormannc Member Posts: 17
    #11
    alutiiqmom said:

    left frontal lobe and speech
    Hi:
    My 18 year old daughter's AA3 was also in her left frontal lobe. Before we knew she had the tumor she loosing her ability to speak, but we did not understand what was going on. We never saw her have a seizure, but she was having silent ones, just zoning out. Anyway, they only resected 85-90% of it. The surgery left her with quite a speech impairment. She is doing speech therapy. Did you have a speech impairment and if you did, how are you doing now?
    Also, what was your chemo and how long did you take it? Where was your hospital? Thanks for helping others and giving hope. God Bless.

    Edna

    left frontal lobe and speech
    No I do not have a speech imparement thank god. I think I just skated by having issues with that. I live in NC so I just had my surgery locally. The night before I had surgery I started having silent seizures as well. I have to say I can't think of many things worse than those. I felt like I was dying each time. They would come and go every 15-30 minutes and last roughly 2-5 minutes each time.

    I do have some memory imparement and my processing ability has slowed by 2-3 seconds. Its hard to have conversations on difficult topics as my brain is slow to process what I want to say and lot of the time what I want to say comes out wrong. I really have to sit and contemplate what I want to say. I'd be terrible on fast answer quiz shows!

    I am glad your daughter made it through. I really hate to hear about the speech impairment. You both look like very nice ladies. Let me ask you, have you talked to her about her feelings on this whole situation? I am always curious to see how different people come out of a very similar situation with a completely different view on things.
  • Gaurang
    Gaurang Member Posts: 8
    #12
    Astrocytoma Grade 3

    Hi,

    can you guide me please?
  • survivormannc
    survivormannc Member Posts: 17
    #13
    Gaurang said:

    Astrocytoma Grade 3

    Hi,

    can you guide me please?

    Astrocytoma Grade 3
    I'd be happy to Gaurang. Tell me a little about your situation. When was your diagnosis? From there we can talk about what you may experience throught this.
  • Eng
    Eng Member Posts: 11
    #14
    alutiiqmom said:

    speech?
    Hi Eng:

    My daughter's tumor was also on the left side, but I do not believe it was that large. How is your brother's speech? My daughter has a speech impairment from her tumor and surgery. What a drag. She is completing her chemo now. It is a rough road. I send you God's blessings from Alaska.
    Edna

    Hi Edna,
    My brother has no
    Hi Edna,

    My brother has no speech impairment and in fact thank God he has no problem at all. The still just like before we found the tumor. He is very fast and he does very difficult calculations (he is in his last year of electrical engineering).

    I feel pain in my heart when i think about all the things everyone goes through with this nasty disease. I can listen to a happy music but I can easy cry. This is a disease that no one can even notices. The person looks completely normal but inside of the brain so much is going on.

    I am just so so for all of us going through this. If you look around most of the people with this disease are professionals with high education or they study hard!

    In Germany, the next door in the hospital, there was a man who was 29th and he just married (6 moths before they found out). He was already a professor and he teaches computer courses at university!!!

    I pray for everyone! Specially for parents!!! It is so so hard to see them watching their children go through this. My mom said before that she feels ashamed walking in front of my brother and being healthy at age 62.

    I have a 3 year old and I know what all the mothers on this site or in the world would possibly go through.

    God bless and God help all the people with these types of diseases.
  • Eng
    Eng Member Posts: 11
    #15
    connsteele said:

    So glad to hear about your
    So glad to hear about your brother's success. Here's hoping and praying that it continues. We live in the U.S. (Ohio) where our son (AA3 dx4-13-11, age 34)is also getting treatment. He is on a chemo regimen right now. I'm curious: how does one go about getting a doctor/surgeon located in Germany (or someone out of the country)? Our son's medical insurance is an HMO, so it's needless to say, a doc in Germany would be out of his network. Does Canadian insurance pay for treatment out of the country?

    Your surgeon sounds amazing. The surgeon who operated on our son only removed enough tumor to get a biopsy, so we would be interested to know if there is another one willing/capable of removing the entire tumor. Thanks, Connie

    Hi Connie,
    Thank you. I am
    Hi Connie,

    Thank you. I am not sure if Canadian health care would pay for this or not. We never asked and we will not use the health care in Canada any more with unsuccessful surgery!!! Their advise to us was incorrect!

    The email address to German doc is:

    nchamb@ini-hannover.de

    His assistance will reply to you. Can you imagine his visit is cheaper than a visit to a clinic in Canada or USA if you don;t have an insurance!!!

    They would even give advise remotely. It wouldn;t hurt to try.

    Just a note, that the doc in Germany told my brother that there is a chance that he becomes paralyzed on his right side of the body and he promised to return it back to normal within 3 weeks!!! Which doctors here told us this is impossible. My brother could hold a spoon after his surgery and now he play his guitar just like before!!! This is a difference between doctors!!!
  • Gaurang
    Gaurang Member Posts: 8
    #16
    survivormannc said:

    Astrocytoma Grade 3
    I'd be happy to Gaurang. Tell me a little about your situation. When was your diagnosis? From there we can talk about what you may experience throught this.

    Astrocytoma Grade 3


    Thanks for reply

    My diganosis was done on 1st Sept.2011 and surgery was done on 3rd sept. and i have started 6 week radiation from 9th December. at present i have pain in legs and feeling tired and week and some time facing problem in speech and memory.

    Doctor saays that, survival period is only 4-5 months because of poor prognosis!
  • blackngray
    blackngray Member Posts: 11
    #17
    Gaurang said:

    Astrocytoma Grade 3


    Thanks for reply

    My diganosis was done on 1st Sept.2011 and surgery was done on 3rd sept. and i have started 6 week radiation from 9th December. at present i have pain in legs and feeling tired and week and some time facing problem in speech and memory.

    Doctor saays that, survival period is only 4-5 months because of poor prognosis!

    Hi Gaurang
    I'm sorry to hear what your doctor has reported to you. I do have concerns about that and questions.
    First, how are you feeling today? What is your prognosis? Are you taking decadron? Is that why you have pain in your legs (joints)?? The fatigue is most definitely from the radiation!

    Blackngray
  • I_Promise
    I_Promise Member Posts: 218 Member
    #18
    blackngray said:

    Hi Gaurang
    I'm sorry to hear what your doctor has reported to you. I do have concerns about that and questions.
    First, how are you feeling today? What is your prognosis? Are you taking decadron? Is that why you have pain in your legs (joints)?? The fatigue is most definitely from the radiation!

    Blackngray

    survival range varies greatly
    but typically for AA 3 it is btw 4-5 years.

    I don't know why your doc would say 3-4 months. Even for GBMs it is a leat 12 months.

    J.
  • Gaurang
    Gaurang Member Posts: 8
    #19
    blackngray said:

    Hi Gaurang
    I'm sorry to hear what your doctor has reported to you. I do have concerns about that and questions.
    First, how are you feeling today? What is your prognosis? Are you taking decadron? Is that why you have pain in your legs (joints)?? The fatigue is most definitely from the radiation!

    Blackngray

    Hi Blackngray,
    yes you are

    Hi Blackngray,

    yes you are right i feel tired and weak. there is swelling in my both legs and more pain in right leg.

    some times i cant speak properly due to laking of words. radiation will over in two days and my doctor (consultant of radiation oncologyst)will discontinue temozolomide(oral chemo therapy)for one month and after an MRI new dose will be desided by doctor and it would be one dose in a week.

    Is this right treatment or any other option?
  • willnotbeatme
    willnotbeatme Member Posts: 3
    #20
    what is your diet like?

    what is your diet like?
  • willnotbeatme
    willnotbeatme Member Posts: 3
    #21
    alutiiqmom said:

    speech?
    Hi Eng:

    My daughter's tumor was also on the left side, but I do not believe it was that large. How is your brother's speech? My daughter has a speech impairment from her tumor and surgery. What a drag. She is completing her chemo now. It is a rough road. I send you God's blessings from Alaska.
    Edna

    Im a 2 1/2 year survivor of
    Im a 2 1/2 year survivor of a AA3 and still do temodar, my blood work has always come back very well and I plan on staying on the mataince cycle of the temodar for as long as my body can take it. Im cancer free to this day. I have no deficits...

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