Grade III: Anaplastic Oligodendroglioma lifespan?

13567…11

Comments

  • Jess1506
    Jess1506 Member Posts: 1
    #42
    My mummy
    On march 16th 2010 my mum had a massive Brain haemorrhage and we were told she would not make it through the night, she got rushed to the hospital in the city where she had life saving surgery, after it, the surgeon came out and told us she was alive But had found abnormal tissue, it was the oligodendroglioma,and the haemorrhage was a result of the Tumor, he said if she was lucky she would have 3-5 years, from the Tumor now she is also epileptic she had her first ceasure in august and then had a scan and it turned out her tumor is gone for now, mum was getting dejavu before the bleed and was missing the signs, we are all so grateful and thankful to still have her here bossing and organising us:) really hope my mums storey brings hope to some others and always remember there's always a light at the end of the tunnel and everything happens for a reason, always have faith and think positive. Positive vibes cause positive out comes
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #43
    Anderdw said:

    Feedback on lifespan
    Although I am not 26 like your son (I was 49 when diagnosed) my diagnosis and treatment was much the same. I had a craniotomy where the surgeon felt he got all the tumor. I then underwent chemotherapy (PCV) which my body resisted greatly to the point where my oncologist moved me to Temodar after only 2 cycles. I stayed on Temodar on the same regimen as your son for 2 years.

    It is now 8 /2 years later and I feel great. They still monitor me with an MRI every 6 months and so far, thank God, there is no sign of concern.. We are very thankful for great medical care but really give credit to prayer and our faith in God.

    thank you!
    Thank you so much for your note. I am thrilled to hear that you are doing so well!

    I just have two questions, if you don't mind--1) What grade? 2) did you have the gene deletions that made your type more sensitive to chemo? David's was a three and he did not have the deletions. I met a gal in the oncologist's office who had a grade 3 oligodendroglioma and our dr gave her 15 years. I was dumbfounded...why 3 to 5 for David then? Because of the gene deletion.....

    Well, it freaked me out but I said nothing. I didn't want to do that to my son. And as time goes by and he continues to do well, I feel that it's up to God, whatever the grade, whatever the gene makeup. I try to life each day at a time. I struggle but when I look back, I am absolutely amazed by how my family, David, and I have all come. Only because of the grace of God.

    Blessings to you!
    Cindy

    And again, thank you so much for your encouraging words. I lay in bed at night and think about all the positives I've heard...and I refuse to think about the bad things.
  • Woodsymom
    Woodsymom Member Posts: 13
    #44
    Woodsymom said:

    Radiation has started
    Thanks for your reply Cindy. My son was married to the love of his life on August 14, 3 1/2 weeks after his Craniotomy. There was some swelling and puffiness from steroids but all in all he was doing fine. After the wedding, his wife and I began fighting for the insurance company to continue radiation treatments at the university hospital but since they were not affiliated it was not possible. Once we met with Kaiser however, they agreed on the same treatment plan and are in close collaboration with the Emory physicians.

    He has begun radiation on 9/16 with minimal problems. Today it was a headache and fatigue. We have also noticed that Loren's short term memory is very poor. When he goes to the doctor or has to relay important information back to his wife, he just cannot remember the details. He met with the Radiation Oncologist who had told him that he was going to 'Obliterate' the tumor. Let's hope so. Also, the doctor discussed an increase in Rads and had to discuss possible dangers of the treatment which are blindness in his left eye due to the location of the tumor or paralysis on his right side. These are worst case scenarios but a possibility as a result of the intense radiation treatment.

    Thank you for your prayers. I still have my son and now a daughter and we are a pretty strong team.

    Finished radiation 11/8/2010
    My son has finished his radiation! They gave him a graduation tassel with his mask and said we will do an MRI in mid-January. Now we wait to see what the results are of the radiation treatments. Waiting the next 3 months is frightening and very difficult. So many thought s go through my mind of 'what-ifs'.

    He has continued working part-time through the treatments but is now looking for his dream job after graduation from college. He and his new wife are making some plans to get a rental house of their own and begin their new life together. He is doing well so far. Doctor is taking him off his steroid meds and his anti-seizure meds. No chemo for now. He has quite a prayer team on his side. Loren is showing amazing strength.
  • curly123
    curly123 Member Posts: 4
    #45
    tylerbeam1 said:

    The 1p19q chromosome
    The 1p19q chromosome deletions are published as a deciding factor when a doctor tries to determine life expectancy, but I think it's foolish that he would say such a thing. I'm a three-time, ten-year brain cancer survivor with a AO III. Sugery in '99, surgery, 15 months of chemo and 33 rounds of radiation in '03 and surgery and year of chemo in '08.

    More importantly, at 33, I'm the proud father of two amazing children (four and two) and have a great job at Brown-Forman here in Lousiville, Ky. Obviously what kind of medicinal treatment you recieve is crucial, but I believe a positive outlook is just as important. While during treatment in '03 and '08 I trained for half-marathons and did pretty well in both... I haven't changed much as far as lifestyle goes and I'm keeping it that way for as long as I can.

    Both mentally and physically I've been fortunate that very little has changed and, but I understand much of that is simply due to tumor location ... needless to say I've been fortunate.

    I'm also being treated at Duke and have scans every few months to make sure the ol' tumor is still sleeping peacefully. I guess my long-winded answer to your original question is yes. You can far outlive the "traditional" life expectancy of an AO III, and live a productive and full life at that.

    Hope this helps in the least bit.
    Tyler

    hope a day at a time
    I appreciate your remarks! I was diagnosed on 3/28/10 and after a whirlwind of activity scheduled and had brain surgery the next day at Jeff hospital in Philly with Dr Andrews.
    My team is Dr Andrews (brain surgeon,Dr. Ahn Radiologist, and Dr Glass oncologist and nuerologist.They have been there for me since diagnose and are concerned with"quality of life" issues.I am blessed to be in good shape ( other than brain cancer)So that I came through surgery well and 5 days later went back to my gym.
    Made it through 40 radiation treatments and Thedomar pillswithout getting sick.I have through have had some setbacks including a grand mal seizure back 9/13th but started on Avasin an seem to seem to be better based upon my symptoms.
  • kirk192
    kirk192 Member Posts: 2
    #46
    Cindysue,

    I was very distressed to read your post. I was diagnosed with an AO III in Oct. 2006 at the age of 34 after a grand Mal seizure. I had a partial resection, do to the proximity of my motor cord. I went through 7 weeks of chemo(Temodar)and radiation, (proton therapy) at Mass General Hospital. My doctor feels that I have at least 20 years and who knows what might be developed in that time. For the most part, like your son, you would never know. I do have some lingering effects. I still am subject to seizures and take medication for them, I have memory loss, and loss of fine motor functions. Things like writing are difficult for me. I have had employment issues, but there are a lot of organizations that want to help. I drive a car, travel,and have a social life. A year after finishing chemo I rode 50 miles on my bike in the Boston Brain Tumor Ride raising $6,000.00. A year later I formed a team and we raised over $15,000 for the ride.

    I have friend with the same condition and he was diagnosed 15 years ago. Has wife, several kids and is very active.

    Every case is different, but I would start looking for second opinions.

    If you want to talk I am more then happy too. My email is kirk192@hotmail.com

    Hope this helps,

    Kirk
  • roxymom
    roxymom Member Posts: 1
    #47
    kirk192 said:

    Cindysue,

    I was very distressed to read your post. I was diagnosed with an AO III in Oct. 2006 at the age of 34 after a grand Mal seizure. I had a partial resection, do to the proximity of my motor cord. I went through 7 weeks of chemo(Temodar)and radiation, (proton therapy) at Mass General Hospital. My doctor feels that I have at least 20 years and who knows what might be developed in that time. For the most part, like your son, you would never know. I do have some lingering effects. I still am subject to seizures and take medication for them, I have memory loss, and loss of fine motor functions. Things like writing are difficult for me. I have had employment issues, but there are a lot of organizations that want to help. I drive a car, travel,and have a social life. A year after finishing chemo I rode 50 miles on my bike in the Boston Brain Tumor Ride raising $6,000.00. A year later I formed a team and we raised over $15,000 for the ride.

    I have friend with the same condition and he was diagnosed 15 years ago. Has wife, several kids and is very active.

    Every case is different, but I would start looking for second opinions.

    If you want to talk I am more then happy too. My email is kirk192@hotmail.com

    Hope this helps,

    Kirk

    Kirk,
    Good to read your post tonight. My husband was diagnosed with AO in August of 2009. Good resection as it was in left frontal lobe and relatively small. Did radiation and continues the temodar regimen. Originally we were told he'd do temodar for 24 treatments and we were beginning the count-down and seeing light at the end of the tunnel. Today the doctor said he may never quit taking temodar. This is very disheartening as life is not near as much fun on temodar (although I know it could be so much worse). I had pretty much felt like he was going to beat this thing because everything has been going so well, and feel like the hope was sucked right out of me today. I guess oncologists are supposed to be somewhat pessimistic - always looking for recurrance. I am trying to believe that life can be "normal" again. Thanks for breathing a little hope back into me. I have two kids, 8 and 12 and they very much need a healthy daddy. Do you still take the temodar even four years later? I understand that sometimes we need to redefine normal, but having difficulty with the idea of living indefinitely on chemo.

    Thanks again,
    Jennifer
  • cartgate15
    cartgate15 Member Posts: 2
    #48
    going on 5 years
    this may be somewhat dated but dis regard if necessary or desired,
    I also had a brain tumore 4 years and 8 months ago.
    I was an active golfer and athelete and this came as a complete shock as we all know.
    The statistics are scarry but then, what part of this whole process wasn't?I came to realize, it is what it is and approach it as a bump in the road or a funny bounce the ball takes.But I was not going to **** the way I live and if this was all, to live each day and no regrets.
    the hardest (and there are others)was getting back in shape I also went to the Mayo clinic who treated me with the heavy radiation
    I stayed in Hope lodge (which I highly recommend) (it is a free place to stay, the cancer society pays for while undergoing treatment)
    I would say after meeting a lot more people that the common thread among survivors is they all have a very positive attitude and look forward to tomarrow being a better day and don't dwell on what or how long it has been.(this sometimes is easier said then done,and when your anniversery comes up (have a birthday dinner and then pay it forward.
    because we are all in together.
  • KateB_Tallahassee
    KateB_Tallahassee Member Posts: 6
    #49
    What Doctors Say!
    Cindy; it is a year since your post. This is my very first time on any survivor's website.
    I'm wondering how your son is.

    It may seem trite to say, but honestly, you really can't believe what doctors say. If you do,hook, line and sinker, then you're sunk.

    When I was diagnosed with Stage C (level 4) Esthesioneuroblastoma (frontal lobe cancer) in 1999, they gave the bleak statistics for this very rare cancer, and it did come back in 2005 by metastisizing to neck and lymph system, but was again treated.

    I am still alive, and to look at me you'd never believe I had a sick day in my life, after 11 years now. I've outlived all predictions, and though I wonder why, it's a blessing.

    But, I NEVER really believed that what they said applied to me. Some would call it denial. But that can be a positive.

    I eat a "cancer" diet of fresh fruits and veggies, fish, eggs, very little meat and dairy. And try to eat as much raw veggies (washed well) as possible. For a younger person, like your son, that may be harder for him to swallow. But, I tell you that, since we know (via PET Scan procedure) that cancer LOVES suger, avoiding it, white flour and as much processed food as possible, will yeild great results in giving his body the best possible chance of fighting the cancer in itself.

    I have had many ups and downs, and suffered more from so much treatment than the cancer itself, having had more complications of therapy than the norm.


    I know, we don't have the same cancer, but just saying. Don't believe the doctors, cause only GOD knows the day and the hour of your death. He has it all in control!

    Wishing you the best. Kate
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #50
    KateB_Tallahassee said:

    What Doctors Say!
    Cindy; it is a year since your post. This is my very first time on any survivor's website.
    I'm wondering how your son is.

    It may seem trite to say, but honestly, you really can't believe what doctors say. If you do,hook, line and sinker, then you're sunk.

    When I was diagnosed with Stage C (level 4) Esthesioneuroblastoma (frontal lobe cancer) in 1999, they gave the bleak statistics for this very rare cancer, and it did come back in 2005 by metastisizing to neck and lymph system, but was again treated.

    I am still alive, and to look at me you'd never believe I had a sick day in my life, after 11 years now. I've outlived all predictions, and though I wonder why, it's a blessing.

    But, I NEVER really believed that what they said applied to me. Some would call it denial. But that can be a positive.

    I eat a "cancer" diet of fresh fruits and veggies, fish, eggs, very little meat and dairy. And try to eat as much raw veggies (washed well) as possible. For a younger person, like your son, that may be harder for him to swallow. But, I tell you that, since we know (via PET Scan procedure) that cancer LOVES suger, avoiding it, white flour and as much processed food as possible, will yeild great results in giving his body the best possible chance of fighting the cancer in itself.

    I have had many ups and downs, and suffered more from so much treatment than the cancer itself, having had more complications of therapy than the norm.


    I know, we don't have the same cancer, but just saying. Don't believe the doctors, cause only GOD knows the day and the hour of your death. He has it all in control!

    Wishing you the best. Kate

    thank you
    Thank you, Kate, for your reply. Your post really encouraged me and I really appreciate it!

    David is doing really good. He is due for his 3 month MRI and checkup in January. I am going to ask our oncologist again about diet. I'd asked him before about what would be detrimental or beneficial, but the dr was noncommittal, like it didn't make a difference. I may just do some internet research and see if I can come up with some ideas. Where did you learn about what kinds of foods help and what kinds are not good for you?

    David has not accepted the drs' predictions about lifespans but I have had a harder time. I think I am in awe of and intimidated by the neurosurgeon/oncologist. He's a big deal at our hospital...oversees several clinicals and runs a research lab and travels all over the world lecturing and teaching about fighting brain cancers. But little by little, I am starting to believe that David is going to outlive their expectations. I keep praying that will happen.

    Thank you again for your post.
    Love and blessings to you,
    Cindy in Salem, OR
  • cindylee219
    cindylee219 Member Posts: 2
    #51
    anaplastic oligodendroglioma
    My sister has just been diagnosed with this type of brain cancer. We are going to a hospital in Pittsburgh. I have talked with her dr. her team has told me that she can have several years of quality life. NOw her cancer is the high grade. SInce she has been diagnosed she has gotten mennigities from the surgery and set her radiatioin back I have been real concerned about this cancer spreading. Her team has told me that as far as they can see there has been some changess made in the mri and that the tumor has grown back some BUt they still have not upgraded it to a GBM, we were told that with a GBM the average span is 5 years he said most people do not make it past his mark but this with a stage IV. He also told us that there is ONE person in the usa that has a GBM and hey are going on 10 years!!!! I know a nurse who told me a friend of hers has a GBM and is still working and going on 6 years... so there is hope now with a stage III oligo they never did say how long she has only that her chances greatly improve for treatment and for survival...so hang in there and best of luck to and your son!
  • cindylee219
    cindylee219 Member Posts: 2
    #52
    j_waffles said:

    Combining therapies > good, but with caution
    Actually, my dad is a oligoastrocytoma grade IV survivor of 14 years. He did surgery and chemo, as well as alternative/natural therapy to help him through the roughness of the chemo (PVC). So you could combine them, just be careful.

    oligo brain tumor
    My sister was just diagnosed with this cancer she had a resection and flap removal and mennigitis..now she is starting her radiatioin and then her chemo. I see where u say your dad did alternative/natural therapay I am interested in this can you tell me about it? thanks so much
  • ssaia2
    ssaia2 Member Posts: 1
    #53
    anaplastic astrocytoma
    I was just recently diagnosed (thursday) with anaplastic astrocytoma. I have been on temodar since dec 23 and if anything have more energy then before. I will start radiation the week of jan 10th. the best i could find was a 5 year life expectancy so far. but my take on it is that God will have us on this earth as long as he wants us here. God has the plan, not us. if i have 5 years then blessed be me. God is great.
  • Rory1987
    Rory1987 Member Posts: 120
    #54
    cindylee219 said:

    anaplastic oligodendroglioma
    My sister has just been diagnosed with this type of brain cancer. We are going to a hospital in Pittsburgh. I have talked with her dr. her team has told me that she can have several years of quality life. NOw her cancer is the high grade. SInce she has been diagnosed she has gotten mennigities from the surgery and set her radiatioin back I have been real concerned about this cancer spreading. Her team has told me that as far as they can see there has been some changess made in the mri and that the tumor has grown back some BUt they still have not upgraded it to a GBM, we were told that with a GBM the average span is 5 years he said most people do not make it past his mark but this with a stage IV. He also told us that there is ONE person in the usa that has a GBM and hey are going on 10 years!!!! I know a nurse who told me a friend of hers has a GBM and is still working and going on 6 years... so there is hope now with a stage III oligo they never did say how long she has only that her chances greatly improve for treatment and for survival...so hang in there and best of luck to and your son!

    good to hear that your son
    good to hear that your son is doing ok... i was actually browsing this site for people who are undergoing or who underwent brain radiotherapy and who are having positive results, if you don't mind me asking, can i ask what kind of radiotherapy did your son receive?
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #55
    Rory1987 said:

    good to hear that your son
    good to hear that your son is doing ok... i was actually browsing this site for people who are undergoing or who underwent brain radiotherapy and who are having positive results, if you don't mind me asking, can i ask what kind of radiotherapy did your son receive?

    radiation
    Hi, Rory.

    I don't know a technical name for the type of radiation that my son had. I know that it was not full brain radiation. It was directed just at the area where his tumor had been before the surgery. It was also not the cyber knife form of radiation. He went for radiation treatments Monday through Friday, for six weeks.

    Are you going to be undergoing radiation? We were warned that it would make David really tired and worn out, but we were still surprised at the level of fatigue that he experienced. He also lost his hair. But I am glad to be able to report that his hair grew back in pretty quickly after his treatments were over. It took a few months, but he regained his energy level too, though he does not have quite as much stamina as before. But we think that is because he's still taking Temodar on a monthly basis. He still plays pretty competitive basketball and he works out regularly at his gym. He rides his mountain bike all over....to work, to school, and just around the city, for exercise (and to save the hassle of dealing with traffic and finding a parking place). As far as we can tell, David has not had any significant negative results from radiation. You said you were looking for positive results....well, we are so very grateful that David's MRIs have not shown any changes or signs of tumor growth since his surgery and the radiation treatments. David has been taking Temodar all along, so I don't know if his positive results are from the chemo or the radiation. I believe it is from the combination of both treatments. When we were trying to decide on treatment options, our oncologist strongly recommended that David do both chemo and radiation at the same time. He said that they had a synergistic effect on each other...when done together, they amplified the effects and they both each became more effective. David's tumor pathology report showed that his type of tumor did not have the gene deletions that made the tumor more susceptible to chemo, and that's why the doctor wanted us to do both treatments simultaneously.

    David still has frequent headaches, but we believe it's from the Temodar and not the radiation. He's really doing very well...he's gone back to college and he's working part time too. You would never know that he'd ever been sick even one day. He has a very strong positive fighting outlook, and our family does everything we can to support him and to stand with him in believing that he can beat this. I believe that it's God's hand on David that is making the difference for him and for our family.

    David has his 3 month MRI and doctor checkup next week. Even with how good he is doing, these appointments are very hard for me and the rest of the family. David considers them checkups and he never seems to be overly worried, but I know it's hard on him too. I don't think these appointments will ever get easier.

    Please let me know if you need more specific information regarding David's type of radiation. I can contact his radiologist and get more details if that would help you.

    Blessings,
    Cindy in Salem, OR
  • Rory1987
    Rory1987 Member Posts: 120
    #56
    cindysuetoyou said:

    radiation
    Hi, Rory.

    I don't know a technical name for the type of radiation that my son had. I know that it was not full brain radiation. It was directed just at the area where his tumor had been before the surgery. It was also not the cyber knife form of radiation. He went for radiation treatments Monday through Friday, for six weeks.

    Are you going to be undergoing radiation? We were warned that it would make David really tired and worn out, but we were still surprised at the level of fatigue that he experienced. He also lost his hair. But I am glad to be able to report that his hair grew back in pretty quickly after his treatments were over. It took a few months, but he regained his energy level too, though he does not have quite as much stamina as before. But we think that is because he's still taking Temodar on a monthly basis. He still plays pretty competitive basketball and he works out regularly at his gym. He rides his mountain bike all over....to work, to school, and just around the city, for exercise (and to save the hassle of dealing with traffic and finding a parking place). As far as we can tell, David has not had any significant negative results from radiation. You said you were looking for positive results....well, we are so very grateful that David's MRIs have not shown any changes or signs of tumor growth since his surgery and the radiation treatments. David has been taking Temodar all along, so I don't know if his positive results are from the chemo or the radiation. I believe it is from the combination of both treatments. When we were trying to decide on treatment options, our oncologist strongly recommended that David do both chemo and radiation at the same time. He said that they had a synergistic effect on each other...when done together, they amplified the effects and they both each became more effective. David's tumor pathology report showed that his type of tumor did not have the gene deletions that made the tumor more susceptible to chemo, and that's why the doctor wanted us to do both treatments simultaneously.

    David still has frequent headaches, but we believe it's from the Temodar and not the radiation. He's really doing very well...he's gone back to college and he's working part time too. You would never know that he'd ever been sick even one day. He has a very strong positive fighting outlook, and our family does everything we can to support him and to stand with him in believing that he can beat this. I believe that it's God's hand on David that is making the difference for him and for our family.

    David has his 3 month MRI and doctor checkup next week. Even with how good he is doing, these appointments are very hard for me and the rest of the family. David considers them checkups and he never seems to be overly worried, but I know it's hard on him too. I don't think these appointments will ever get easier.

    Please let me know if you need more specific information regarding David's type of radiation. I can contact his radiologist and get more details if that would help you.

    Blessings,
    Cindy in Salem, OR

    Thank you
    Thank you for your reply, Im also actually undergoing radtiotherapy to my brain to treat my extramedullary plasmacytoma which made an intracranial extension and I wanted to know how others feel after getting radiotherapy to the brain and How they cope with the side effects. Again thank you for your reply will pray for the best for your son and family

    Rory
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #57
    Rory1987 said:

    Thank you
    Thank you for your reply, Im also actually undergoing radtiotherapy to my brain to treat my extramedullary plasmacytoma which made an intracranial extension and I wanted to know how others feel after getting radiotherapy to the brain and How they cope with the side effects. Again thank you for your reply will pray for the best for your son and family

    Rory

    Hello again
    Hi, Rory.

    I just wanted to let you know that David's MRI was clear...no changes, no signs of any growth, no problems at all. His doctor said the MRI looked great, and David is doing awesome. We are so very grateful to God! We were told at the beginning that every day that David goes without a recurrence is a day in his favor...the longer it is before a recurrence, if he even has a recurrence, the better his chances are of beating that recurrence. So we are very happy!

    When we first started learning about David's situation, I was very frightened (huge understatement). One thing that really helped me was to hear or read about how other people were beating cancer and living well. It gave me some hope to hold onto. So I want to be able to help others and tell people who might be frightened like I was frightened....to hang on and have hope, that there are people who are recovering and getting better. David is one of them. I wish I knew back in the beginning of all of this....where we would be today. It's like the difference between night and day. We have so much more hope and are feeling brave and positive about the future.

    When you do your radiation, please be sure that you get all the rest that you want and need, and please hold on to the thought that it will be over and you will feel a lot better. It takes time, but you will recover!

    Please keep us updated on how you are doing.
    Love and blessings,
    Cindy in Salem, OR
  • Rory1987
    Rory1987 Member Posts: 120
    #58
    ssaia2 said:

    anaplastic astrocytoma
    I was just recently diagnosed (thursday) with anaplastic astrocytoma. I have been on temodar since dec 23 and if anything have more energy then before. I will start radiation the week of jan 10th. the best i could find was a 5 year life expectancy so far. but my take on it is that God will have us on this earth as long as he wants us here. God has the plan, not us. if i have 5 years then blessed be me. God is great.

    i agree
    I agree with you, God has plans for everyone, If he wants you to stay here longer then God will will heal you. Don't lose hope, i've read stories of people with brain tumors/cancers who have survived for 20-30+ years.
  • isamara
    isamara Member Posts: 1
    #59
    cindylee219 said:

    anaplastic oligodendroglioma
    My sister has just been diagnosed with this type of brain cancer. We are going to a hospital in Pittsburgh. I have talked with her dr. her team has told me that she can have several years of quality life. NOw her cancer is the high grade. SInce she has been diagnosed she has gotten mennigities from the surgery and set her radiatioin back I have been real concerned about this cancer spreading. Her team has told me that as far as they can see there has been some changess made in the mri and that the tumor has grown back some BUt they still have not upgraded it to a GBM, we were told that with a GBM the average span is 5 years he said most people do not make it past his mark but this with a stage IV. He also told us that there is ONE person in the usa that has a GBM and hey are going on 10 years!!!! I know a nurse who told me a friend of hers has a GBM and is still working and going on 6 years... so there is hope now with a stage III oligo they never did say how long she has only that her chances greatly improve for treatment and for survival...so hang in there and best of luck to and your son!

    GBM Long Term Survivors
    Hello -
    I just wanted to let you know that there are TONS of long term survivors of GBM. I met one today that was 23 years after. And that was just today. I know of several 10years plus after diagnosis and that's just from one email list.
    If you go to www.virtualtrials.com and sign up for the emails, you will find extremely inspirational stories and excellent ongoing research for all tumor types.
    Good luck and never give up.
    Audrey
  • Rory1987
    Rory1987 Member Posts: 120
    #60
    isamara said:

    GBM Long Term Survivors
    Hello -
    I just wanted to let you know that there are TONS of long term survivors of GBM. I met one today that was 23 years after. And that was just today. I know of several 10years plus after diagnosis and that's just from one email list.
    If you go to www.virtualtrials.com and sign up for the emails, you will find extremely inspirational stories and excellent ongoing research for all tumor types.
    Good luck and never give up.
    Audrey

    Indeed.. That site is filled
    Indeed.. That site is filled with inspirational stories of brain cancer survivors, I've read a story about a guy named George Plym in that site and he is a 36 year brain cancer survivor. Such a very inspiring website.
  • Bodrul
    Bodrul Member Posts: 3
    #61
    brain tumour patient
    Hi, hope you are well. I read your story about your son. I really sorry to hear that. I'm a 26 year old male. I found out last friday i have the same tumour as your so anaplastic oligodendroglioma grade 3 (right frontable lobe). i've had surgery and will start radiotherapy and chemotherapy like your some. We have the same tumour. I was told i have a life expectancy of 3-5 years. I've been trying to look for survivors that lived for more than 5 years but its very rare although every individual case is different. statistics are never accuare but what I found out from cancer research and a couple of other sites is, 15% of sufferers have lived for more than 5 years and 10% of sufferers have lived for more than 10 years. all day long i'm trying to look for people who have survived and lived a long life but it does look bleak but theres always hope, all you can do is pray. You never know. i don;t have any children but i can't imagine a mothers loss. must be the worst thing in the world. my mother knows everything apart from my life expectancy which i will tell her soon. I never thought i'd have to tell my mother that i'm dying. Telling her will feel a million time worse than when I found out, its going to break her heart. if you need to talk, i'm here or your son, you can pass on my e-mail address, bodrulislam@gmail.com. just make sure he's looking after himself and trying to eat and stay healthy. Remember theres always hope. :) Bodrul, UK< London

Discussion Boards