Grade III: Anaplastic Oligodendroglioma lifespan?

poe51987

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
My husband had the same thing happen. He had his fourth oligodendroglioma removed in Jan of this year and returned in march and it had grown larger than a softball. The tumor has advanced to stage 4 and that is why it is growing so quickly. Darren cannot have anymore surgeries and the fourth caused a stroke he is just 43 and my world. It breaks my heart that this disgusting thing called CANCER can just come in and steal your life. God bless you and all of us.
Liz

cindysuetoyou

poe51987 said:

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

Thank you for writing and sharing your experience. I am so sorry to hear that your husband has had recurrences. I think after five years I would have believed that it was beaten and would not be returning. It makes me realize all over again that I will never take an easy breath or be able to be free from the fear and the dread of of a recurrence for my son....for the rest of my entire life. I cannot imagine what my son must feel and must be going thru. He's very brave-he's my hero and I love him so much. It is breaking my heart. But I know that all of us on this site are going thru the same feelings.

Would you mind if I asked you what grade tumor your husband had when he was first diagnosed? Did his surgeon remove all of the original tumor? I am putting a lot of hope into the fact that David's surgeon said that he got 100% of the visible tumor. Of course, our oncologist told us that there were lots of microscopic tumor cells left....but we are praying that the radiation and the ongoing chemo will crush those remaining cells and destroy them totally.

I have a friend who was told that he was "terminal" because he had pancreatic cancer. They told him he had 6 months at the most. He's cancer free today, over ten years since that original diagnosis. He told me something that I hang on to...he said that his second dr. (he went to a different dr than the one who gave him that bad prognosis) told him that sometimes, based on all the statistics and facts, someone does not look like they will beat their cancer, but they do beat it and keep on living, and the drs don't know why. They just don't...die. That's what happened for my friend, that's what I pray will happen for David, and that's what I will pray will happen for your husband too.

I hope you and your husband can stay strong and continue to fight the beast with everything you have. As long as your husband and my son are alive, I totally believe that there is hope.

love and blessings,
Cindy

tylerbeam1

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

joan_doyle

oligodendroglioma
hi my husband was diagnosed with oligodendroglioma ( which caused seizures also) in Oct 2001 and the docs at the time said nothing but sit any wait in 2004 it progressed and they operated and got 70/80% of turmour he done Chemo rads and gladly is still alive to-day 2010- moitored every six months and is perferct in everyway(only can't drive with seizures etc.,) I writing from Ireland and all I can say that we were very lucky to have a great team of medics and especially our GP - I husband was a non believer in Meditation and now over these years conscentrated on meditation which helps to control seizures and has eased the torture(worry) the mind gives us and it really doing great if you want email me and meditation is bascially concentratin on deep breathing excerise and relaxing your son will be just fine with your love and helping support remember breathing is for free god bless you at this time i know how stressful it is thinking of you Joan

Ale89

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.
Alex

April74

My Mom
My Mom at age 46 was diagnosed with anaplastic oligo in 2003, after having a seizure. After MRI they removed the tumor from frontal lobe and she had radiation and chemo(temodar)and regular MRI's after that. She has had a very long road but is still alive. Originally they told me she could survive as long as 5 years but this is her 7th year. She has had 3 surgeries to remove re-occurances and last week at her check-up they found another tumor on the frontal lobe again about the size of a silver dollar. About a year ago she started having back pain and after MRI they found her tumor has also moved into her spinal cord which we were told could not remove those, butr she did receive radiation on those and they did shrink.

She is a very strong woman and always has a very positive outlook on things. I am not sure yet if she will be having surgery for her 4th time or not...we are waiting on her DR's advice.

I can say to all of you keep strong, there is hope!!

j_waffles

sue Siwek said:

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.

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.

OleMan

My Oligo
I was 39 when diagnosed in 1999 with a mixed anaplastic Oligodendroglioma with Astrocytoma in the center. My surgery did not result with a total resection of the tumor, only 70%. Pathology said it was a high grade III to a Grade IV. I followed surgery with radiation. I have not had chemotherapy, I wanted to see how far I could get before that. Dr. told me the same thing 2 to maybe 5 years, even M.D. Anderson in Houston said the same thing. It's been 11 years going on 12, and I am just now having a recurrence. Newer studies show that the younger you are when diagnosed the longer the median survival. Remember doctors can only tell you what has happened in the past, not what will happen in the future. Anyway, I just ignore it and go on my merry.

Woodsymom

Grade III: Anaplastic Oligogendroglioma
My son is also 26 and has just been diagnosed with Grade III: Anaplastic Oligodendroglioma. We will have surgery for a risection/removal of as much of the tumor from the left temporal lobe as possible. After that, depending on surgery results we will discuss treatment options. As a mom, I cannot think past what the next step is, which is surgery. I am afraid for him and his future wife.....They are getting married August 14, 2010.

I need to get as much info as possible but I also know he is an individual and the results will be different for different people.

Still trying to digest the diagnosis, when they were treating him for anxiety. He was actually having focal seizures for 8 months before he was referred for a MRI and the tumor was discovered.

l6blue

everyone is different
Seven years ago my sister was diagnosed with grade III anaplastic oligodendroglioma. She had a craniotomy, and they thought they got about half the tumor. This was followed by chemotherapy, and then radiation. 10 months after her diagnosis, they could find no sign of the tumor, and her doctor told her there was "no reason to believe it will ever come back." So far all her checkups have been good. I hope all goes well for your son.

Toshy

30+ years
I'm 40 now! Diagnosed when I was 7. mine was an Astrocytoma or medullablastoma or ependyoma. Finally found another long-timer 40+ years I think and I think his was an Olio.

When comparing notes our biggest similarities brain tumor, age of Dx (he was 12) and longevity!

So our age of Dx may be different but I pray he gets our longevity!

lkollros

l6blue said:

everyone is different
Seven years ago my sister was diagnosed with grade III anaplastic oligodendroglioma. She had a craniotomy, and they thought they got about half the tumor. This was followed by chemotherapy, and then radiation. 10 months after her diagnosis, they could find no sign of the tumor, and her doctor told her there was "no reason to believe it will ever come back." So far all her checkups have been good. I hope all goes well for your son.

My brother is going on 6+ years!
My brother was diagnosed with a Grade III Anaplastic Astrocytoma in 2001. The doctors were not optimistic at all. They said he would be lucky to live 5 years. He underwent radiation and two years of chemo treatment. To this day all of his MRI's have been normal! We just take oneday at a time and pray for the best.

Carrie King

dwcox said:

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.

dwcox
My husband was diagnosed with Oligo, left frontal lobe this March. Had 2 crainotomies, infection surgery, and bone flap removal -- all in June alone.

Went from 4.8cm to 5mm. Now MRI in Oct to replace bone flap and then will decide Stereotactic Radiation or Temodar.

It is such, such wonderful news no additional growth. How often do you have mri's to monitor?

My husband never, ever had any signs of tumor, except for the seizure he had in his sleep. He is without any deficits whatsoever.

Your post was a blessing of hope for me.

cindysuetoyou

Toshy said:

30+ years
I'm 40 now! Diagnosed when I was 7. mine was an Astrocytoma or medullablastoma or ependyoma. Finally found another long-timer 40+ years I think and I think his was an Olio.

When comparing notes our biggest similarities brain tumor, age of Dx (he was 12) and longevity!

So our age of Dx may be different but I pray he gets our longevity!

Thank you to all who replied
I haven't been on this site for a while. I am so encouraged by all of your messages. Thank you so much for taking the time to write.

David is doing great. He's working and getting ready to go back to college. (He skipped a year of college while dealing with surgery, radiation, chemo.) He works out at a gym, plays basketball, does whatever he feels like doing. He is still taking Temodar, and his dr does not have any plans to discontinue Temodar as long as David can continue tolerating the treatment. His dr says that he's kept people on Temodar for as long as four years. I don't know how I feel about that. Three more years seems like a long time, but on the other hand, I've always wanted to fight with every weapon at our disposal, for as long as we can use that weapon. Temodar makes him feel pretty sick, but we know that he could have had to take a much harder chemo, and we are glad that he can take and tolerate Temodar.

David has an MRI and oncology appt on Thursday, Oct. 30th. We are hoping and praying that we get a good report. These appointments scare me so much, but David considers them to just be routine checkups. Overall, his mental outlook is incredible. He just says that he will not allow this to take over his life, and he doesn't talk about it much or act like he's worried. He told me that he does not believe that he is going to die anytime soon. I think that his positive, strong, fighting mental outlook has helped him a lot to stay healthy.

I thank God every single day for how good David is doing. I believe with all my heart that it's God's hand on David that is making the difference.

I pray that you and your loved ones are fighting hard, staying strong, and are doing well.

Love and blessings to you all,
Cindy in Salem, OR

cindysuetoyou

Woodsymom said:

Grade III: Anaplastic Oligogendroglioma
My son is also 26 and has just been diagnosed with Grade III: Anaplastic Oligodendroglioma. We will have surgery for a risection/removal of as much of the tumor from the left temporal lobe as possible. After that, depending on surgery results we will discuss treatment options. As a mom, I cannot think past what the next step is, which is surgery. I am afraid for him and his future wife.....They are getting married August 14, 2010.

I need to get as much info as possible but I also know he is an individual and the results will be different for different people.

Still trying to digest the diagnosis, when they were treating him for anxiety. He was actually having focal seizures for 8 months before he was referred for a MRI and the tumor was discovered.

hello
Hello, Woodsymom.

I felt connected to you as soon as I read your post since our sons are the same age and have the same diagnosis. I hope that all these posts from long-term survivors have been an encouragement to you. They have really helped me.

I don't know exactly where you are right now in your battle, but when David was recovering from surgery and we were trying to decide what treatment options we were going to take...that was the hardest time for us. We were so conflicted and terrified and uninformed. We couldn't even pronounce "oligodendroglioma." Once we decided on a treatment course and began that process, things got better. His condition was not really improved, but mentally, we were able to start going forward. I guess what I am trying to say is that it should get better for you. You are in the hardest time but hopefully you are going forward now too.

I would love to know how your son is doing today. I will be thinking of you and praying for you and your son and for your extended family.

love, blessings, and peace to you,
Cindy in Salem, OR

Carrie King

cindysuetoyou said:

Thank you to all who replied
I haven't been on this site for a while. I am so encouraged by all of your messages. Thank you so much for taking the time to write.

David is doing great. He's working and getting ready to go back to college. (He skipped a year of college while dealing with surgery, radiation, chemo.) He works out at a gym, plays basketball, does whatever he feels like doing. He is still taking Temodar, and his dr does not have any plans to discontinue Temodar as long as David can continue tolerating the treatment. His dr says that he's kept people on Temodar for as long as four years. I don't know how I feel about that. Three more years seems like a long time, but on the other hand, I've always wanted to fight with every weapon at our disposal, for as long as we can use that weapon. Temodar makes him feel pretty sick, but we know that he could have had to take a much harder chemo, and we are glad that he can take and tolerate Temodar.

David has an MRI and oncology appt on Thursday, Oct. 30th. We are hoping and praying that we get a good report. These appointments scare me so much, but David considers them to just be routine checkups. Overall, his mental outlook is incredible. He just says that he will not allow this to take over his life, and he doesn't talk about it much or act like he's worried. He told me that he does not believe that he is going to die anytime soon. I think that his positive, strong, fighting mental outlook has helped him a lot to stay healthy.

I thank God every single day for how good David is doing. I believe with all my heart that it's God's hand on David that is making the difference.

I pray that you and your loved ones are fighting hard, staying strong, and are doing well.

Love and blessings to you all,
Cindy in Salem, OR

To: Cindysuetoyou
Your posts are so encouraging to myself and I am sure many others. When most people hear of my husbands "condition" they say "oh, i am sorry". That immediately gives me the defeat feeling.

My husband, like your son, has an incredible outlook. My husband has returned to everything he did before "the tumor". I too believe in their positive mental outlook.

"Our" MRI is on Oct 4th, however we have to wait until Oct 6th to get the results. The last MRI was done the day before his bone flap removal. However the remaining 5 mm weren't even visible on the MRI.

Praying for you and your family,

Carrie

Woodsymom

cindysuetoyou said:

hello
Hello, Woodsymom.

I felt connected to you as soon as I read your post since our sons are the same age and have the same diagnosis. I hope that all these posts from long-term survivors have been an encouragement to you. They have really helped me.

I don't know exactly where you are right now in your battle, but when David was recovering from surgery and we were trying to decide what treatment options we were going to take...that was the hardest time for us. We were so conflicted and terrified and uninformed. We couldn't even pronounce "oligodendroglioma." Once we decided on a treatment course and began that process, things got better. His condition was not really improved, but mentally, we were able to start going forward. I guess what I am trying to say is that it should get better for you. You are in the hardest time but hopefully you are going forward now too.

I would love to know how your son is doing today. I will be thinking of you and praying for you and your son and for your extended family.

love, blessings, and peace to you,
Cindy in Salem, OR

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.

cdavis07

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

Kayla...What are the other natural medicines
Hi Kayla, my husband also has and Oligodendroglioma III. What natural meds are there? I'm very interested in what you have learned or researched.

cindysuetoyou

Carrie King said:

To: Cindysuetoyou
Your posts are so encouraging to myself and I am sure many others. When most people hear of my husbands "condition" they say "oh, i am sorry". That immediately gives me the defeat feeling.

My husband, like your son, has an incredible outlook. My husband has returned to everything he did before "the tumor". I too believe in their positive mental outlook.

"Our" MRI is on Oct 4th, however we have to wait until Oct 6th to get the results. The last MRI was done the day before his bone flap removal. However the remaining 5 mm weren't even visible on the MRI.

Praying for you and your family,

Carrie

David's test results
Hello...I just wanted to let you all know that David's MRI was totally clear...no tumor growth, no changes. I am thanking God on my knees every night for these results.

I believe that if it can happen for us, it can happen for all of you. If you could have heard the way the doctors talked when David was first diagnosed, you'd understand why it's such a miracle to get hear these results.

I am praying for all of you who are fighting cancer, and for those who have loved ones who are fighting. Peace and strength and blessings to you,
Cindy in Salem, OR

Anderdw

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.