Grade III: Anaplastic Oligodendroglioma lifespan?

Bodrul said:

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

Oligodendroglioma Grade 3
Bodrul- My son is now 26 years old. July/2010 he had a craniotomy and a 3mm tumor was removed, leaving tentacle-like pieces in his brain. The location was his left side temporal lobe area. After the surgery, he did have some aphasia and word retrieval problems but that cleared up as the inflammation and site healed. He was married on August 14, 2010 after a 6 week recovery period. August 18, he began radiation for 30 treatments. Little to no side effects. Some hair loss at the sideburn site only. From the July surgery, he does have memory issues but more like names of places, names of lesser known friends, etc. He continues to work 30 hours/wk as an assistant manager at a pizza place. He gets frustrated because he has graduated college before all of the treatments and wants to find a better job. Physically, he suffered more from the steroids and weight gain but since he has come off of those, he is back to his normal weight. We are having a follow-up MRI on February 16, 2011 with an appointment with the radiation oncologist to review the MRI findings on February 23, 2011. WE really don't talk about the life expectancy although he knows he could be facing an early death. We just move forward and wait for the first follow-up MRI review and praise God for any news we get.

Bodrul said:

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

Time
Bodrul,

I read the postings on this site, started when my husband was diagnosed with a GBMIV. My husband was given 6-8 months and lived for 15 months. Since his death in June, I have had two friends whose husbands have passed away suddenly from heart attacks. Not trying to be morbid, my point: not one of us has any guarantee of time... Who can say we will be here in 3-5 years. You have been given a frightening diagnosis. Just live. Alot can happen in 3-5 yrs. There are many new trials for brain cancer. Best of luck to you.
Becky

Grade III Anaplastic Oligodendroglioma and 7 years later......
My husband was diagnosed 7 years ago with Grade III Anaplastic Oligodendroglioma, he has grand mal, petite mal and focal seizures. The latest MRI has not shown any significant changes and our oncologist (whom we love and adore) has him almost maxed out on not just Keppra but also Trileptal. There might be a medication change here soon as these "break through" seizures are happening more frequently. We've gone through 2 resections, a full year of chemo and radiation and to be honest, thought maybe we were in the clear being the MRI's keep coming back with "no significant change". While we are trying to stay positive and keep a "normal" life......some days it's very hard.

oliodendronglioma stage 3
My sister was diagnosed at age 48 with oliodendronglioma stage III tumor the size of an orange in her left frontal lobe in July 2004, over seven years ago. The doctors susptected that she had it for many years, and is slow growing. She had a craniotomy, then temodor for six months, then some reoccurance showed up on an MRI so doctors stopped the temodor since it wasn't working, then radiation which worked but did some damage to her brain- mostly emotional which is controlled with lithium and celexa.

She held her own pretty well for five years and had her own home and could drive a car and do all her bills etc., but not really work since her emotional state and sharp focus and short term was affected and she had been an occupational therapist in the medical field treating patients, so that ended very sadly to her. Then she started to have partial seizures about four years after surgery and nothing seemed to light up on the contrast MRIs so the doctors could not confirm if seizures were due to scar tissue from the craniotomy, swelling, and/or cancer growing. The neurologists started her on some heavy duty antiseizure drugs and after eight months (Vimpat, Zonisamide, Keppra XR, Valium) of that which did affect her quality of life (memory, energy, lethargy) and did not stop but only slowed the siezures. The surgeon did another brain surgery to remove the margins of tumor that had grown around the old scar. She did well, much better after surgery again. They did not have confirmation that the tumor had grown until they opened her up and did the cytology. Same tumor, same stage, after seven and a half years. Now she just finished her first round of chemotherapy--CCNU, Vincristine, and Procarbazine, and had her MRI today that showed that it is working only after one six week round, five more to go. The MRI showed the brain is coming back into areas that were swollen and she has fewer and milder partial seizures (1-4 per day) and she is so much better and happier and has hope again.

So to make a long story short, have hope for your boy and you. You never know what will happen. Do not believe doctors that give time limits unless very close to the end. Go to another doctor, the best neuro-oncologist you can find and the best cancer research center. Every cancer is biologically unique in each individual, and Oliodendroglioma is so rare a cancer that they do not know all that much about it. The original doctors told me (not her thankfully) that they would be happy if she lived two years after surgery and she is still kickin' seven and a half years later and all of her family is very grateful for that, even though it has been a long haul for her. She wants to be here and is brave enough to keep trying what they throw at her and enjoy the small things in life.

cindysuetoyou said:

Hope
Thank you, Loran, so much, for your encouraging post! I was very, very happy to read it.

Our oncologist/neurologist is the doctor who heads up the BBB program and research at OHSU. David's treatments and follow-ups etc are all based at OHSU. One of the deciding factors that caused us to stay at OHSU was the blood brain barrier program. Right now David is doing so well on Temodar that there are no plans at this time for him to participate in that program, but we know that someday we may need to take advantage of it.

May I ask you a few questions? Please forgive me if I am being nosey or insensitive. I do not mean to be, at all. I am just so consumed with trying to find new or future help for my son....

Were the blood brain barrier treatments successful for you? Did you have visible tumor and what did the treatments accomplish? Are you still a part of that program? If not, why not? Was the treatment difficult? What were the side effects like? And why are you now looking at proton therapy?

David does not have the gene deletion. We were told that this significantly decreases his odds. I am focusing on how well David is doing today and I pray very hard that he will continue to do well.

Thank you again for your encouragement. It means so much to me.

Love and blessings,
Cindy

First MRI follow-up after Radiation
Cindy- Wanted to let you know that my son Loren will be having his first MRI follow-up tomorrow, 2/16 with a radiation oncologist appointment for review of results on 2/23. Thank you for posting your son's Blog site. I am forwarding that information to Loren, my son and his new wife of 6 months. They are strong and he is doing very well except for the short term memory loss.No chemo has been recommended at this time...just the radiation. His father and I were with him, his wife and his youngest brother, celebrating his brother's 21st birthday. His Dad and I, both looked at each other and could not believe how healthy, strong and unaffected he appears to people. He is strong. His wife, Leigh is strong. We are covered up with prayer warriors throughout our community. Stay tuned and I will be updating you about our results. Thanks for all your uplifting stories.

Ro_711 said:

Me
Hey there. I'm actually like your son- I have been diagnosed with a grade III anaplastic olio. What the heck is going on??? I'm just now hitting a week and a half of the same treatment (radiation for six weeks and Temodor for two years). Sounds like a great plan and all, but why put an expiration date on me? I have three boys and haven't even hit my 35th birthday yet. Surgeon told me that they got all of the "abnormal" tumor out and that we are doing this in hopes of no reoccurrence. I'm falling into my own little bubble. Not really letting anyone in except for family. Haven't contacted work yet, etc. Guess that's just me. Never have had a seizure to my knowledge. Found back in 2001 but it was never diagnosed as it is now. (went in for severe dizziness/vertigo) I want to get off of this ride and go back on Its A Small World! I think I may be going through some 'anger'. Ya think?

Now that I'm "in the know"
Now that I'm "in the know" so to speak (I wish I weren't) I hear of people with malignant brain tumors all the time. I just got off the phone with my mom and a sister of her coworker was diagnosed 10 years ago, did chemo only and is ticking just fine to this day. With brain tumors, specifically oligodendrogliomas, being as rare as they are, I really don't think doctors' can give accurate information regarding prognosis. All I seem to hear is "good news" (at least as far as cancer goes).

alison4444 said:

oliodendronglioma stage 3
My sister was diagnosed at age 48 with oliodendronglioma stage III tumor the size of an orange in her left frontal lobe in July 2004, over seven years ago. The doctors susptected that she had it for many years, and is slow growing. She had a craniotomy, then temodor for six months, then some reoccurance showed up on an MRI so doctors stopped the temodor since it wasn't working, then radiation which worked but did some damage to her brain- mostly emotional which is controlled with lithium and celexa.

She held her own pretty well for five years and had her own home and could drive a car and do all her bills etc., but not really work since her emotional state and sharp focus and short term was affected and she had been an occupational therapist in the medical field treating patients, so that ended very sadly to her. Then she started to have partial seizures about four years after surgery and nothing seemed to light up on the contrast MRIs so the doctors could not confirm if seizures were due to scar tissue from the craniotomy, swelling, and/or cancer growing. The neurologists started her on some heavy duty antiseizure drugs and after eight months (Vimpat, Zonisamide, Keppra XR, Valium) of that which did affect her quality of life (memory, energy, lethargy) and did not stop but only slowed the siezures. The surgeon did another brain surgery to remove the margins of tumor that had grown around the old scar. She did well, much better after surgery again. They did not have confirmation that the tumor had grown until they opened her up and did the cytology. Same tumor, same stage, after seven and a half years. Now she just finished her first round of chemotherapy--CCNU, Vincristine, and Procarbazine, and had her MRI today that showed that it is working only after one six week round, five more to go. The MRI showed the brain is coming back into areas that were swollen and she has fewer and milder partial seizures (1-4 per day) and she is so much better and happier and has hope again.

So to make a long story short, have hope for your boy and you. You never know what will happen. Do not believe doctors that give time limits unless very close to the end. Go to another doctor, the best neuro-oncologist you can find and the best cancer research center. Every cancer is biologically unique in each individual, and Oliodendroglioma is so rare a cancer that they do not know all that much about it. The original doctors told me (not her thankfully) that they would be happy if she lived two years after surgery and she is still kickin' seven and a half years later and all of her family is very grateful for that, even though it has been a long haul for her. She wants to be here and is brave enough to keep trying what they throw at her and enjoy the small things in life.

Oligodendroglioma stage 3
Hi,
My husband has also been diagnosed with the oliodendronglioma stage III tumor. We found his tumor even before it was identified a s tumor during ann MRI scan for another benign tumor which was successfully removed and no problem resulted from that. We were watching him for couple of years and in 1997 the doctors told us he had oligodendroglioma stage 1. He went through radiation first and then temodar chemo on and off for al these years and the tumor changed to level 3 couple of years ago. He has been working fulltime with not much issues eventhough he gets very tired and become more passive recently. Last week, the doctor said temodar is not working anymore ,there is some hemorrhaging tissue inthe tumor area and recommended surgery (the surgery was not an option before because of the tumor's location, left frontal lobe.His doctor said it is not that bad and surgery will take care of it. This was a hard news to take so went to see a neurooncologist Mayo clinic in Rochestor for second opinion and the doctor at Mayo said the surgery might impair him and there is no hope for more than a year. I am so shocked and sad and don't know what to do. We are going to Mayo again today to meet with the surgeon there.please pray for us.

Raani