Grade III: Anaplastic Oligodendroglioma lifespan?

cindysuetoyou
cindysuetoyou Member Posts: 513
edited March 2014 in Brain Cancer #1
My 26 year old son was diagnosed with an anaplastic oligodendroglioma in May of 2009. He had a craniotomy and they felt like they got all of the visible tumor out. He then had 6 weeks of radiation along with 6 weeks of Temodar. Now he's doing the 5 days of Temodar/23 days off, indefinitely. Except for nausea etc while on chemo, you'd never know that anything had ever been wrong with him.

His dr. was not optimistic. He basically gave us no hope. All he would say is that the median survival rate is 3 to 5 years. When I pressed him for some hope and asked him if anyone with this kind of cancer, a grade III, ever lived like ten or so years, he said it could be sooner, like two years.

What I am wondering....I haven't seen anything yet where someone with anaplastic oligodendroglioma says that they lived more than 5 or so years. Maybe I just missed it. Anyone out there going on 5+ years?

His FISH evaluation showed that he does not have the gene deletions that make this form more sensitive to chemo.

Thank you to anyone who can encourage me.
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Comments

  • hestrada
    hestrada Member Posts: 3
    Thank God everyday!
    I read about your son, and it really broke my heart, my brother was diagnostic in December 2009 with glioblastoma and his survival will be 6 months, everyday that pass we want to make a quality day with love, I always whisper him that I love him, we have not give up, he does not even know he that he is sick because he was a mental disorder, he does recognize us then he forget us at first I was thinking he had Alzheimer'S, it is a bless that your son might live longer than my brother and everyday thank God for see him wake up everyday, ask him for courage.
    Good luck and rembember you are not alone.
  • PBJ Austin
    PBJ Austin Member Posts: 347
    hestrada said:

    Thank God everyday!
    I read about your son, and it really broke my heart, my brother was diagnostic in December 2009 with glioblastoma and his survival will be 6 months, everyday that pass we want to make a quality day with love, I always whisper him that I love him, we have not give up, he does not even know he that he is sick because he was a mental disorder, he does recognize us then he forget us at first I was thinking he had Alzheimer'S, it is a bless that your son might live longer than my brother and everyday thank God for see him wake up everyday, ask him for courage.
    Good luck and rembember you are not alone.

    Don't give up!!
    You doctor is quoting statistics but your son is an individual person so the stats don't apply. A year ago my then 25-year-old sister was diagnosed with Anaplastic Astrocytoma 3 and she was given 3-7 years survival. We were also told it could happen in as little as 2 years.

    She began treatment of radiation and Temador last spring. At first there was no change so they stepped up the chemo, and that's when she took a turn for the better. Her MRI last week showed no signs of cancer at all!! The doctor is very puzzled and declined to say she's in remission since he can't figure out what is going on. The chemo will continue through May and if there are still no signs of cancer the treatment will be suspended.

    I know how hard it is but you must learn to live in the present and celebrate every small victory. They are coming out with new and better treatment all the time so I don't care what you have been told, there most certainly is hope for your son.

    All the best to you, and we are always here if you need us.
  • arkansasbrains
    arkansasbrains Member Posts: 38
    statistics.
    my husband was diagnosed with an grade 2 oligodendroglioma in dec. 2008. after his first surgery, and complete resection, he did get back to normal. like you said, it was like it never happened! except for the occasional seizure. the statistics that i read after his second diagnosis of a grade 4 glial neoplasm looked not as hot as his original tumor. the statistic rate from the american cancer society was from a few years back, and it seemed that they don't really factor in things like complete resection, which from my understanding, makes a huge difference, general overall health (which sounds good for your son), age... any of it. statistics are scary things that you tend to take so literally. i know it scared the hell out of me. it sounds like your doctor is really preparing you for the worst. which is okay, i guess... just be sure he doesn't rob you of hope. i mean, everybody is different. and since those statistics are dated, they haven't considered new advancements in all sorts of treatments either. it sounds like you and your son have a lot to hope for. please let me know if there is any way i can help.
    gesundheit.
    sydney
  • cindysuetoyou
    cindysuetoyou Member Posts: 513

    Don't give up!!
    You doctor is quoting statistics but your son is an individual person so the stats don't apply. A year ago my then 25-year-old sister was diagnosed with Anaplastic Astrocytoma 3 and she was given 3-7 years survival. We were also told it could happen in as little as 2 years.

    She began treatment of radiation and Temador last spring. At first there was no change so they stepped up the chemo, and that's when she took a turn for the better. Her MRI last week showed no signs of cancer at all!! The doctor is very puzzled and declined to say she's in remission since he can't figure out what is going on. The chemo will continue through May and if there are still no signs of cancer the treatment will be suspended.

    I know how hard it is but you must learn to live in the present and celebrate every small victory. They are coming out with new and better treatment all the time so I don't care what you have been told, there most certainly is hope for your son.

    All the best to you, and we are always here if you need us.

    Thank you to all for your replies
    Thank you for replying to my post. I don't really know how this site works so I hope everyone can see this and know that I appreciate your comments and support. PBJ Austin, thank you for reminding me that the drs go by statistics and not by individuals. We personally know someone who is a ten year survivor of pancreatic cancer, and his dr was absolutely positive that he would be dead in 6 months at the longest. He's fine today with no sign whatsoever of any cancer. So I know that the drs can't be sure of lifespans.

    PBJ, I am SO GLAD to hear that your sister is doing so well! I am so glad for her and for you and your whole family. That is great news, and also it's a huge encouragement to me.

    We are doing good as far as living life to the fullest. I am so proud of my son. He is working, playing basketball, working out at the gym......my son is very brave and he is believing that he could beat this. Our whole family believes this too and we are all standing with him. I can't even begin to imagine how awful it would be if no one believed with you that you can beat it. I pray every day that God does a miracle and my son does beat this. I also pray for hope and strength for us. I personally started out good...all strong and positive. It seems like in the first part when we were hearing all the terrible stuff, going thru surgery, radiation, etc, I was in crisis mode and I was super strong and fighting hard. Now that it's back to daily life, I feel like I am unravelling. I have to fight hard every day to be positive and stay strong and keep hope. I have been researching all over the Internet and I think it's hard on me. But it's not about me....it's about my son and our family and making sure that we are all positive and still fighting hard and loving each day that we have.

    Thank you again, to all of you.
    Cindy
  • cindysuetoyou
    cindysuetoyou Member Posts: 513

    statistics.
    my husband was diagnosed with an grade 2 oligodendroglioma in dec. 2008. after his first surgery, and complete resection, he did get back to normal. like you said, it was like it never happened! except for the occasional seizure. the statistics that i read after his second diagnosis of a grade 4 glial neoplasm looked not as hot as his original tumor. the statistic rate from the american cancer society was from a few years back, and it seemed that they don't really factor in things like complete resection, which from my understanding, makes a huge difference, general overall health (which sounds good for your son), age... any of it. statistics are scary things that you tend to take so literally. i know it scared the hell out of me. it sounds like your doctor is really preparing you for the worst. which is okay, i guess... just be sure he doesn't rob you of hope. i mean, everybody is different. and since those statistics are dated, they haven't considered new advancements in all sorts of treatments either. it sounds like you and your son have a lot to hope for. please let me know if there is any way i can help.
    gesundheit.
    sydney

    Thank you
    Thank you for your encouragement. I really, really appreciate it. I also replied earlier but I don't really have this discussion board down very well.

    How is your husband doing today? I have heard that grade II is a whole lot better than III, but that this type of cancer is more unpredictable than other types. I guess that can be good or bad......

    I think that you are absolutely right....the statistics are outdated. I've been doing a lot of internet research, which has been very terrifying for me. But our radiologist told me that advances in cancer treatments are going forward so fast that by the time you read it on the internet, it very likely is outdated already. She also said that she believes that there is a lot of great research going on all over the world and a major breakthrough in cancer treatment could be just around the corner. Our oncologist is heading up several clinicals for oligodendrogliomas and they sound promising.

    I do think that our dr is preparing us for the worst, but he went a little overboard. We totally felt like my son would be dead in 3 years. Our entire family was absolutely grief-stricken. We have 3 other children, two married, one not, and we have a large extended family too. We were all crying our heads off. But our radiologist gave us some hope...and we were so, so, so very grateful. We started going forward from that point on. When we saw the oncologist last, he asked us how we were doing, and if we had any questions or concerns. I told him that we were cool, except that we did not want him to take away our hope. He seemed surprised, and he said that there is lots of hope. Quite a different story from the first several visits. I think that he said that because the MRIs have all looked really, really good.

    My son's first MRI after surgery showed kind of a greyish white area, if I remember right, where the tumor used to be. That seemed to be what they expected to see, and they were not concerned. So then the next MRI, 2 months later, after chemo and radiation, showed kind of a white area where the tumor used to be. It looked like a scar to me. They suspected it was either scar tissue, blood, or just a cavity from the tumor. They didn't know. The contrasting agent did not show that there was any tumor. They suggested that we hold off on starting the 5 day on/23 days off of Temodar and see what happened with that spot....if it grew a tumor or not. They thought that the Temodar might prevent a tumor from starting up and then they wouldn't know what that spot was. But they told us it was our choice. My son opted to start the Temodar, and I was very glad. So then the next MRI showed no tumor growth whatsoever. They've used that contrasting agent on every MRI they've done, and have not seen any tumor, thank God!

    Anyway, every time we have seen the dr, he says that the MRIs look great and that he is very pleased with how well my son is doing. The visits take about 15 minutes. But the time between the MRI and the drs reading it and then reporting to us are just hell for us. Unbelievably hard. I am sure that you can relate. My son has his next MRI on March 10th and I'm already tensing up and losing sleep. I wonder if it will ever get easier.....

    Thank you again for your reply,
    Cindy
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    hestrada said:

    Thank God everyday!
    I read about your son, and it really broke my heart, my brother was diagnostic in December 2009 with glioblastoma and his survival will be 6 months, everyday that pass we want to make a quality day with love, I always whisper him that I love him, we have not give up, he does not even know he that he is sick because he was a mental disorder, he does recognize us then he forget us at first I was thinking he had Alzheimer'S, it is a bless that your son might live longer than my brother and everyday thank God for see him wake up everyday, ask him for courage.
    Good luck and rembember you are not alone.

    Thank you
    Thank you for replying to my comment. I am so grateful for the support, especially from people who really know what I am going through.

    I am so sorry to hear about your brother. He is very blessed to have a sister who loves him and cares for him. Even though the drs said 6 months, please don't believe them. They really do not know for sure. I have a friend who is a ten year survivor of pancreatic cancer. He is totally cancer free to this day, and his dr had just about guaranteed he would be dead in 6 months at the longest.

    I will be praying for you and your brother...for a miracle, just like I am praying for a miracle for my son.

    Stay strong, and thank you for encouraging me.
    Cindy
  • arkansasbrains
    arkansasbrains Member Posts: 38

    Thank you
    Thank you for your encouragement. I really, really appreciate it. I also replied earlier but I don't really have this discussion board down very well.

    How is your husband doing today? I have heard that grade II is a whole lot better than III, but that this type of cancer is more unpredictable than other types. I guess that can be good or bad......

    I think that you are absolutely right....the statistics are outdated. I've been doing a lot of internet research, which has been very terrifying for me. But our radiologist told me that advances in cancer treatments are going forward so fast that by the time you read it on the internet, it very likely is outdated already. She also said that she believes that there is a lot of great research going on all over the world and a major breakthrough in cancer treatment could be just around the corner. Our oncologist is heading up several clinicals for oligodendrogliomas and they sound promising.

    I do think that our dr is preparing us for the worst, but he went a little overboard. We totally felt like my son would be dead in 3 years. Our entire family was absolutely grief-stricken. We have 3 other children, two married, one not, and we have a large extended family too. We were all crying our heads off. But our radiologist gave us some hope...and we were so, so, so very grateful. We started going forward from that point on. When we saw the oncologist last, he asked us how we were doing, and if we had any questions or concerns. I told him that we were cool, except that we did not want him to take away our hope. He seemed surprised, and he said that there is lots of hope. Quite a different story from the first several visits. I think that he said that because the MRIs have all looked really, really good.

    My son's first MRI after surgery showed kind of a greyish white area, if I remember right, where the tumor used to be. That seemed to be what they expected to see, and they were not concerned. So then the next MRI, 2 months later, after chemo and radiation, showed kind of a white area where the tumor used to be. It looked like a scar to me. They suspected it was either scar tissue, blood, or just a cavity from the tumor. They didn't know. The contrasting agent did not show that there was any tumor. They suggested that we hold off on starting the 5 day on/23 days off of Temodar and see what happened with that spot....if it grew a tumor or not. They thought that the Temodar might prevent a tumor from starting up and then they wouldn't know what that spot was. But they told us it was our choice. My son opted to start the Temodar, and I was very glad. So then the next MRI showed no tumor growth whatsoever. They've used that contrasting agent on every MRI they've done, and have not seen any tumor, thank God!

    Anyway, every time we have seen the dr, he says that the MRIs look great and that he is very pleased with how well my son is doing. The visits take about 15 minutes. But the time between the MRI and the drs reading it and then reporting to us are just hell for us. Unbelievably hard. I am sure that you can relate. My son has his next MRI on March 10th and I'm already tensing up and losing sleep. I wonder if it will ever get easier.....

    Thank you again for your reply,
    Cindy

    dear cindy.
    well, it sounds like you all have everything under control. it's just your oncologist who needs to work on the bedside manner. it funny about your radiologist, because the one we saw for luke's (my husband's) treatment spoke with much more positive language than any of our other doctors (i.e. neurosurgeon, neurologist, oncologist....etc). perhaps they have special training for that. ha!
    i know it's hard not to live mri to mri. i find myself doing it sometime. but then i think that if it's just a routine checkup, and we're not having more symptoms or anything, that things are probably okay.
    please keep us updated as to the results of your son's mri. we're glad for good news, and always around.
    luke is doing well. thank you for asking. he gets stronger everyday.
    check out our "about me" page if you have some time. we can share information.
    .sydney
  • bkallaus
    bkallaus Member Posts: 1

    dear cindy.
    well, it sounds like you all have everything under control. it's just your oncologist who needs to work on the bedside manner. it funny about your radiologist, because the one we saw for luke's (my husband's) treatment spoke with much more positive language than any of our other doctors (i.e. neurosurgeon, neurologist, oncologist....etc). perhaps they have special training for that. ha!
    i know it's hard not to live mri to mri. i find myself doing it sometime. but then i think that if it's just a routine checkup, and we're not having more symptoms or anything, that things are probably okay.
    please keep us updated as to the results of your son's mri. we're glad for good news, and always around.
    luke is doing well. thank you for asking. he gets stronger everyday.
    check out our "about me" page if you have some time. we can share information.
    .sydney

    Olio
    Hi! My name is Bethany and I am new to this site.

    In August of 2009 my husband had a total resection of a tumor in the right front temporal lobe. After pathology tests were run we were told it was a Grade II oligod....can't think of the spelling right now. No further treatment was needed. We went home 2 days after surgery. He then developed a MRSA infection and required 2 wash out surgeries and several rounds of antibiotics. Everything was going great and he was back to work. He's 43 and very healthy otherwise - hasn't missed a day of work in over 6 years.

    Just a couple of days ago he had a 4mo. out MRI check up. The tumor has returned and has grown into the other side of his brain and is 3 inches in size. Our surgeon said he's never seen anything like this after a total resection - that size in only 4 mos. time. The neurosurgeon feels it's too risky to try and operate to remove this one because of location. So - he's going in for a biopsy next week to determine the grade now. He will then start radiation and chemotherapy.

    What can I expect with the radiation and chemo?

    Thanks for any and all information. Right now my head is just spinning in overdrive.

    Bethany
  • sue Siwek
    sue Siwek Member Posts: 279
    bkallaus said:

    Olio
    Hi! My name is Bethany and I am new to this site.

    In August of 2009 my husband had a total resection of a tumor in the right front temporal lobe. After pathology tests were run we were told it was a Grade II oligod....can't think of the spelling right now. No further treatment was needed. We went home 2 days after surgery. He then developed a MRSA infection and required 2 wash out surgeries and several rounds of antibiotics. Everything was going great and he was back to work. He's 43 and very healthy otherwise - hasn't missed a day of work in over 6 years.

    Just a couple of days ago he had a 4mo. out MRI check up. The tumor has returned and has grown into the other side of his brain and is 3 inches in size. Our surgeon said he's never seen anything like this after a total resection - that size in only 4 mos. time. The neurosurgeon feels it's too risky to try and operate to remove this one because of location. So - he's going in for a biopsy next week to determine the grade now. He will then start radiation and chemotherapy.

    What can I expect with the radiation and chemo?

    Thanks for any and all information. Right now my head is just spinning in overdrive.

    Bethany

    don't know where you are
    don't know where you are getting treatments. will say run don't walk to the nearest teaching and research hospital. my husband is a 10 yr survivor of a grade 111 astrocytoma. went to henry ford hospital after being told at our local hospital that they couldn't do much for him. check the best hospital for this in your state and go there.
  • sue Siwek
    sue Siwek Member Posts: 279
    bkallaus said:

    Olio
    Hi! My name is Bethany and I am new to this site.

    In August of 2009 my husband had a total resection of a tumor in the right front temporal lobe. After pathology tests were run we were told it was a Grade II oligod....can't think of the spelling right now. No further treatment was needed. We went home 2 days after surgery. He then developed a MRSA infection and required 2 wash out surgeries and several rounds of antibiotics. Everything was going great and he was back to work. He's 43 and very healthy otherwise - hasn't missed a day of work in over 6 years.

    Just a couple of days ago he had a 4mo. out MRI check up. The tumor has returned and has grown into the other side of his brain and is 3 inches in size. Our surgeon said he's never seen anything like this after a total resection - that size in only 4 mos. time. The neurosurgeon feels it's too risky to try and operate to remove this one because of location. So - he's going in for a biopsy next week to determine the grade now. He will then start radiation and chemotherapy.

    What can I expect with the radiation and chemo?

    Thanks for any and all information. Right now my head is just spinning in overdrive.

    Bethany

    will add that you and your
    will add that you and your husband will be spinning for quite a while. this is quite a trip that you will be on. seek help from your primary care dr. i.e. for you a anti-depressant. check periodically with husbands neurologist how it is doing for he may need an anti-depressant as well. he will no doubt be put on a steroid that will change his personality and throw you for a loop. eventually things will probably calm down. you are the advocate, sorry but you will have to keep track of everything going on. question everything! everything! you must understand because he will not be able to or will be so consumed with himself(rightfully). this is a frightful time for both of you. please get support from family and friends, you will need it. hopefully you will come out at the end of this with a good result as we have. best of luck will be thinking and hoping the best for you.
  • arkansasbrains
    arkansasbrains Member Posts: 38
    bkallaus said:

    Olio
    Hi! My name is Bethany and I am new to this site.

    In August of 2009 my husband had a total resection of a tumor in the right front temporal lobe. After pathology tests were run we were told it was a Grade II oligod....can't think of the spelling right now. No further treatment was needed. We went home 2 days after surgery. He then developed a MRSA infection and required 2 wash out surgeries and several rounds of antibiotics. Everything was going great and he was back to work. He's 43 and very healthy otherwise - hasn't missed a day of work in over 6 years.

    Just a couple of days ago he had a 4mo. out MRI check up. The tumor has returned and has grown into the other side of his brain and is 3 inches in size. Our surgeon said he's never seen anything like this after a total resection - that size in only 4 mos. time. The neurosurgeon feels it's too risky to try and operate to remove this one because of location. So - he's going in for a biopsy next week to determine the grade now. He will then start radiation and chemotherapy.

    What can I expect with the radiation and chemo?

    Thanks for any and all information. Right now my head is just spinning in overdrive.

    Bethany

    bethany
    i am very interested in the pathology of your husband's tumor, as something very similar happened with my husband this past year. please let me know if you would like to swap some information. our doctors have said they have never seen anything like this before.
    please check my "about me" page for all of our details if you would like.

    .sydney.
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    bkallaus said:

    Olio
    Hi! My name is Bethany and I am new to this site.

    In August of 2009 my husband had a total resection of a tumor in the right front temporal lobe. After pathology tests were run we were told it was a Grade II oligod....can't think of the spelling right now. No further treatment was needed. We went home 2 days after surgery. He then developed a MRSA infection and required 2 wash out surgeries and several rounds of antibiotics. Everything was going great and he was back to work. He's 43 and very healthy otherwise - hasn't missed a day of work in over 6 years.

    Just a couple of days ago he had a 4mo. out MRI check up. The tumor has returned and has grown into the other side of his brain and is 3 inches in size. Our surgeon said he's never seen anything like this after a total resection - that size in only 4 mos. time. The neurosurgeon feels it's too risky to try and operate to remove this one because of location. So - he's going in for a biopsy next week to determine the grade now. He will then start radiation and chemotherapy.

    What can I expect with the radiation and chemo?

    Thanks for any and all information. Right now my head is just spinning in overdrive.

    Bethany

    Radiation experience
    Hi, Bethany.

    I agree with Sue's comment about making sure you are at a research or teaching hospital. We are at the Oregon Health Sciences University. Did you get more than one opinion on whether or not your husband could have surgery? I'm asking because I read about a gal whose doctors told her that her tumor was inoperable. She had her MRI checked at the University of California at San Francisco and their neurosurgeon read the MRI a little differently and felt that she could remove it, so they went ahead and the surgery was successful--they were able to remove the tumor. I know that this was probably an exceptional case, but I think a second opinion is a good idea.

    I also wanted to tell you about my son's personal experience with radiation and chemo. (Temodar) Will your husband be taking Temodar, and wlll he take it while he does radiation? I think everyone's experience with radiation and chemo varies, but I hope that hearing about what David's experience was like will be a help to you.

    We dreaded radiation. But we had a marvelous radiologist. She told us that people were sorry when their radiation was done because they missed coming to her clinic. I thought, "Yeah, right," but I really was sad when our 6 weeks were up, that we wouldn't be seeing her any more. She was the first person we saw in connection with David's tumor who gave us any hope whatsoever. She was very positive and understanding and she took all the time we needed to explain stuff to us. I love her and I still pray every night that God will bless her.

    David did 6 weeks of chemo and radiation. He lost his hair where the radiation beams went in. It made an odd pattern on his head, so he went ahead and shaved the rest of his hair. He did not lose his eyebrows or eyelashes or any facial hair. He was very bothered by his hair loss. He felt like it made him look like a cancer patient, which of course he was. He hated looking in the mirror and seeing his bald shiny head. But his hair all grew back in after his treatments, and it looks great.

    The biggest problem David had with radiation was the incredible fatigue. He was really wiped out. He was in great shape before they found the tumor. He played college basketball and worked out daily at the gym. But that didn't seem to make a difference. He finished his treatment in July and he still is not 100% over being tired. But he still takes Temodar 5 days a month, and that could be what now makes him feel tired.

    One time while on radiation, David got severe joint pains in his knees and feet. He had to go to the hospital. They didn't know what caused it. I think it was the chemo. They gave him Dilautin which basically knocked him out. But he never did have that joint pain again.

    When David had the radiation treatments, he would close his eyes and he could see bright blue beams under his eyelids. He said that he thought it was the radiation beams. He also could feel it in his teeth. It didn't hurt--he could just feel it. He also noticed a funny smell. But the radiation wasn't painful. He never had his skin get burned or anything like that.

    Later in his treatment, he said that he felt like he was thinking slower and he couldn't remember stuff. He felt like talking was a huge effort. These feelings went away as he recovered from the radiation treatments.

    They made a special, freaky mask for David to wear. It was rigid plastic with little holes in it. He would put the mask on and they would strap the sides of the mask to the table. They did that so everything would line up exactly so the beams would be precise. HIs tumor was located close to his optic nerves and they didn't want to fry his eyesight. Radiation is an amazing thing....like science fiction.

    David didn't have any aftereffects from the radiation, like memory problems or personality changes or coordination issues. David has struggled since the day of his surgery (May 8th, 2009) with headaches and constipation. He still has trouble with both things. He has seen a headache specialist and a stomach doctor. The chemo and the anti-nausea stuff give him headaches and constipate him. He has tried every kind of laxative known to man and he still has trouble. It's better than it used to be, though. I didn't realize that constipation could be so hard to treat and it could make you so miserable. It's been a big problem for David. I don't believe that the radiation caused this. I think it's the chemo that does it.

    One thing that surprised us....David actually felt worse for a few weeks after the radiation was over. I guess it builds up in your system and it takes a while to get over it. But please hang on to the knowledge that better days will be coming soon. It felt like months and months of treatments, but it was only 6 weeks. And now it seems like years ago that he did radiation, and it's been less than a year.

    Overall, the radiation treatments were not as bad as we had expected. Not a walk in the park, but it could have been a lot worse. David seems pretty much the same as he was before the doctors discovered the tumor, except he doesn't have the same level of stamina. If you met David, you would never know that anything had ever been wrong.

    Please keep us posted on your husband's progress.

    with love and blessings to you and your husband,
    Cindy
  • mark7
    mark7 Member Posts: 23
    surviving
    look for my story as (survivor of oliogo)this is a faith booster for what you are going through i will pray for strength and peace for you and your family GOD BLESS YOU.
  • Eugene Velez
    Eugene Velez Member Posts: 1

    Don't give up!!
    You doctor is quoting statistics but your son is an individual person so the stats don't apply. A year ago my then 25-year-old sister was diagnosed with Anaplastic Astrocytoma 3 and she was given 3-7 years survival. We were also told it could happen in as little as 2 years.

    She began treatment of radiation and Temador last spring. At first there was no change so they stepped up the chemo, and that's when she took a turn for the better. Her MRI last week showed no signs of cancer at all!! The doctor is very puzzled and declined to say she's in remission since he can't figure out what is going on. The chemo will continue through May and if there are still no signs of cancer the treatment will be suspended.

    I know how hard it is but you must learn to live in the present and celebrate every small victory. They are coming out with new and better treatment all the time so I don't care what you have been told, there most certainly is hope for your son.

    All the best to you, and we are always here if you need us.

    Grade 3 Astrocytoma and just operated on
    The Love of my life, my wife just had her operation this past Saturday 3/13/10 and the surgeon was able to remove all of the tumor in the right frontal lobe. The following Sunday they gave her another MRI and did not see any remnant of the tumor. Currently she has no side affects from the operation and seems to be acting normal. Now my question is, has anyone used an alternative or found an alternative to radiation? I've read a lot of different views on radiation therapy and it seems to me that in this particular situation radiation does more harm than good. Does anyone think the same as me or have a view on this.
  • dwcox
    dwcox Member Posts: 1

    Grade 3 Astrocytoma and just operated on
    The Love of my life, my wife just had her operation this past Saturday 3/13/10 and the surgeon was able to remove all of the tumor in the right frontal lobe. The following Sunday they gave her another MRI and did not see any remnant of the tumor. Currently she has no side affects from the operation and seems to be acting normal. Now my question is, has anyone used an alternative or found an alternative to radiation? I've read a lot of different views on radiation therapy and it seems to me that in this particular situation radiation does more harm than good. Does anyone think the same as me or have a view on this.

    brain tumor treatment
    I had surgery for a left frontal lobe oligodendroglioma in Sept. 2003, then I had a six month course of Temodar, an oral chemotherapy. It seems to have been very effective in killing any remaining cancer cells. No additional tumor growth since the surgery.
  • KMPonder
    KMPonder Member Posts: 102

    Don't give up!!
    You doctor is quoting statistics but your son is an individual person so the stats don't apply. A year ago my then 25-year-old sister was diagnosed with Anaplastic Astrocytoma 3 and she was given 3-7 years survival. We were also told it could happen in as little as 2 years.

    She began treatment of radiation and Temador last spring. At first there was no change so they stepped up the chemo, and that's when she took a turn for the better. Her MRI last week showed no signs of cancer at all!! The doctor is very puzzled and declined to say she's in remission since he can't figure out what is going on. The chemo will continue through May and if there are still no signs of cancer the treatment will be suspended.

    I know how hard it is but you must learn to live in the present and celebrate every small victory. They are coming out with new and better treatment all the time so I don't care what you have been told, there most certainly is hope for your son.

    All the best to you, and we are always here if you need us.

    Yes!
    That is right. NO signs of cancer! Healing, healing, healing! :)

    We just cannot accept everything doctors tell us, because no two patients are alike. PMJ is right. Treatments are improving and QUALITY lifespans are lengthening. We have to live moment by moment, embracing the days that are great! At the beginning of my husband's diagnosis, I too wanted to know statistics and how long. Doesn't matter, because it does not apply. None of us are guaranteed tomorrow, so carpe diem!

    Have hope and faith!
  • KMPonder
    KMPonder Member Posts: 102
    sue Siwek said:

    don't know where you are
    don't know where you are getting treatments. will say run don't walk to the nearest teaching and research hospital. my husband is a 10 yr survivor of a grade 111 astrocytoma. went to henry ford hospital after being told at our local hospital that they couldn't do much for him. check the best hospital for this in your state and go there.

    Great news
    Sue, this is great news to hear of 10 year survivorship! Doing cartwheels and heel clicks. (Sometimes I feel like I repeat myself on these boards, so I do apologize.) Hubby is in round two of brain cancer. His AAs were diagnosed in August 2009. (Previous malignant tumor was a mixed germ cell on hypothalamus in 1986/87). He is responding well so far to Temodar. Radiation showed more than 50% shrinkage, and we are hopeful this Temodar is going to knock these bad boys on out! Duke has been the best for us, and it was our 2nd opinion.
  • kayla77
    kayla77 Member Posts: 1
    Husband dx with oligoastrocytoma...
    Hey all. I’m new to this site. My husband was diagnosed with grade 3 oligoastrocytoma this week. He just turned 31 yesterday. He had a seizure while mountain biking which caused him to crash. 2 days later, they performed brain surgery and the dr.’s think they were able to remove the entire tumor. My question is… besides traditional chemo and radiation, has anyone else experienced any alternative treatments? Our oncologist suggested us being a part of a clinical trial in which they would give him Temadar (usually a stage 4 drug) to basically be a step ahead of the tumor. There’s also other natural medicines I’ve looked into. We’re going to be deciding his treatment next week so I thought I’d go ahead and put the question out there. I’m scared and don’t know what to do. We have a 17 month old daughter…I need him to be around a long time to be a father for her.

    Thanks
  • sue Siwek
    sue Siwek Member Posts: 279
    kayla77 said:

    Husband dx with oligoastrocytoma...
    Hey all. I’m new to this site. My husband was diagnosed with grade 3 oligoastrocytoma this week. He just turned 31 yesterday. He had a seizure while mountain biking which caused him to crash. 2 days later, they performed brain surgery and the dr.’s think they were able to remove the entire tumor. My question is… besides traditional chemo and radiation, has anyone else experienced any alternative treatments? Our oncologist suggested us being a part of a clinical trial in which they would give him Temadar (usually a stage 4 drug) to basically be a step ahead of the tumor. There’s also other natural medicines I’ve looked into. We’re going to be deciding his treatment next week so I thought I’d go ahead and put the question out there. I’m scared and don’t know what to do. We have a 17 month old daughter…I need him to be around a long time to be a father for her.

    Thanks

    coming at this from a 10 yr.
    coming at this from a 10 yr. survival of my husband. i would tell you that you must make a choice. either oncologist or go with natural medicines. our 10 yr survival has been with traditional medicines. you must be careful about combining traditional and natural medicines as they do not always get along. you need him to be around i understand but be sure that you are at a research and teaching hospital because it is your best chance. 10 yrs ago we drove for over an 1hr 1/2 to get the best care. it was worth it. my husband was in a clinical trial and it shrunk his tumor. not with out some problems but he is with us. i might add that he was also diagnosed with parkinsons(a separate brain disorder but complicating his recovery) please before you add anything natural or holistic check with your oncologist and neurologist.
  • poe51987
    poe51987 Member Posts: 2
    time
    My husband was diagnosed in 2003 and had the same treatment as your son. We had five good years before the first reappearance of the oligodendroglioma. He has now had it a total of five times and is now considered terminal but we did have those good years and it is not uncommon to have that much time in fact in my own research it seemed to follow the same pattern of time in most of those effected by this. My husband had his last surgery three weeks ago tomorrow and he is starting avastin which stops the growth of new blood cells and slows down the growth of tumors and has in some cases nearly stopped the growth of some kinds of brain cancer. I am hopeful but realize this is Darren's last hope of any more time. I hope the best for your son and my heart breaks for him. Good luck and God bless.
    Liz