Grade III: Anaplastic Oligodendroglioma lifespan?

Woodsymom

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.

LoranHaugsted

Hope
Going on 10 years. Stage III anaplastic oligo with astrocytic features. 1 p 19 q deletion. Surgery 2 times Chemotherapy 3 times: PVC, Then Temodar, and last The Blood Brain Barrier Disruption with intra arterial chemo. Learn more at http://www.ohsu.edu/xd/research/centers-institutes/neurology/blood-brain-barrier/
NOW I'm in Loma Linda CA checking into Proton Therapy. I'm hoping to avoid the conventional radiation--Though it has come a long way over the years with IMRT and IGRT techniques.

I was told 10-15 years after my first surgery when it was mistakenly graded as a WHO II benign guaranteed to return.

Honestly, There is so much guess work put into all this--thus we say they are practicing medicine:-)

I was 24 at the time of onset--1 month after I got engaged and a bout a week before my b-day.

There truly is hope, not in ourselves but in our loving creator, Jesus Christ.

cindysuetoyou

LoranHaugsted said:

Hope
Going on 10 years. Stage III anaplastic oligo with astrocytic features. 1 p 19 q deletion. Surgery 2 times Chemotherapy 3 times: PVC, Then Temodar, and last The Blood Brain Barrier Disruption with intra arterial chemo. Learn more at http://www.ohsu.edu/xd/research/centers-institutes/neurology/blood-brain-barrier/
NOW I'm in Loma Linda CA checking into Proton Therapy. I'm hoping to avoid the conventional radiation--Though it has come a long way over the years with IMRT and IGRT techniques.

I was told 10-15 years after my first surgery when it was mistakenly graded as a WHO II benign guaranteed to return.

Honestly, There is so much guess work put into all this--thus we say they are practicing medicine:-)

I was 24 at the time of onset--1 month after I got engaged and a bout a week before my b-day.

There truly is hope, not in ourselves but in our loving creator, Jesus Christ.

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

cindysuetoyou

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

Thank you
Thank you, Bodrul, for taking the time to write to me.

I am so sorry to hear about your situation and to hear that you are going to have to tell your mom what the statistics say about your life expectancy. My heart so goes out to your mom. Our family--me, my husband (David's dad), David's two sisters--we all were with David at the doctor's office when they told David. There has never been such a bad time in any of our lives...nothing that any of us has ever experienced comes close to how bad that day was. I know that of course it was the same for you and your family.

But....here we are, over a year and a half later, with clear MRIs and no major side effects. Yes, David has headaches, and his stomach bothers him. He has trouble concentrating when he's taking Temodar. But his life is so much better that we ever thought it would be when they first told us about the tumor.

I believe that the doctors look at statistics and they try to predict outcomes based on those statistics and past situations. But they still are making guesses. They really can't know these things for sure. I have read posts on this site and other places where people are living much longer than the doctors predicted. I know people who were given a worse prognosis than David's and yours and they are still alive and doing well. So you are right--there is always hope.

I would love to stay in touch with you and know how you and your mom are doing. If your mom would like to talk to me, please pass my email address on to her. It's cindysuetoyou@hotmail.com. For us, the very beginning of this road was so hard. We were shocked and terrified. I wish I'd known then how much better it would be a little further down the road....maybe knowing that would help your mom a little.

David doesn't want the cancer to define who he is or take over his life, so he doesn't talk about it except with family and closer friends. It's his way of dealing and I never try to interfere or make him talk about it. He talks to me about it pretty freely, but he does not dwell on it. He totally believes that he is going to kick it and he has a huge fighting spirit and he's very grateful for how good he is going. You can visit his blog: http://web.me.com/davidwebb21/Trusting_in_God/About_Me.html

Thank you again for your post. Please keep us updated. I believe that you and my son both can beat this. Please fight hard and hang on to hope.

Love and blessings,
Cindy in Salem, OR

Beckymarie

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

Girl2010

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

So good to hear all these
So good to hear all these positive stories! My brother (19) was dx with a grade 3 Anaplastic Astrocytoma in November... and like you all, I looked it up and got no good news with what I read on the internet... 3-5 years. I wish I could explain how good it is to hear all these positive things about surviving this. We are currently looking to go somewhere, anywhere with better treatment for my brother, as we do not live in a big city.

MsTigrLadi

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.

imprezagm4

Hello!
Cindy,

I'm 23 years old here in Bend, OR just got married October 10 2010 and my tumor displayed in late July 2010. I am so encouraged by the survivors and family of people with the same or similar tumors as myself. I have (or had?) an encapsulated Oligodendroglioma Grade 3 WITH co-deletions about as large as a softball (yikes!). I had an awake surgery and Dr. Yundt and Dr. Bell reported a 100% resection... which they told me meant only as far as they could tell. Flew down to UCSF for a second opinion before starting radiation and chemo, saw Dr. Prados who told me, and I quote "you have got a long life ahead of you". Ended up doing radiation with temodar and now just temodar, 5 on 23 off... standard stuff.

So I'm not very far out in the process but I trust in the Lord everyday, like everybody I have good days and bad days as far as my outlook goes. Today was a bad day until I found this forum. I've been very encouraged by all the news.

Now for some encouragement I can offer!
The same time I was in the hospital another young man, I think about 26 years old was brought in with a grade 3 oligo as well, my mom ended up getting to know his wife and mom and have communicated since. I have come to know that a friend of their family is a 14 year survivor of a stage 3 oligodendroglioma with no recurrences. Co-deletions unknown because they weren't doing that sort of testing at that time.

Trust in Him! Either way you'll win

Kyle Hutchinson

alison4444

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.

alison4444

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.

Woodsymom

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

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.

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?

imprezagm4

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).

cindysuetoyou

imprezagm4 said:

Hello!
Cindy,

I'm 23 years old here in Bend, OR just got married October 10 2010 and my tumor displayed in late July 2010. I am so encouraged by the survivors and family of people with the same or similar tumors as myself. I have (or had?) an encapsulated Oligodendroglioma Grade 3 WITH co-deletions about as large as a softball (yikes!). I had an awake surgery and Dr. Yundt and Dr. Bell reported a 100% resection... which they told me meant only as far as they could tell. Flew down to UCSF for a second opinion before starting radiation and chemo, saw Dr. Prados who told me, and I quote "you have got a long life ahead of you". Ended up doing radiation with temodar and now just temodar, 5 on 23 off... standard stuff.

So I'm not very far out in the process but I trust in the Lord everyday, like everybody I have good days and bad days as far as my outlook goes. Today was a bad day until I found this forum. I've been very encouraged by all the news.

Now for some encouragement I can offer!
The same time I was in the hospital another young man, I think about 26 years old was brought in with a grade 3 oligo as well, my mom ended up getting to know his wife and mom and have communicated since. I have come to know that a friend of their family is a 14 year survivor of a stage 3 oligodendroglioma with no recurrences. Co-deletions unknown because they weren't doing that sort of testing at that time.

Trust in Him! Either way you'll win

Kyle Hutchinson

Hello
Hi, Kyle.

Thank you very much for your post. I am very happy to hear about the person who is going on 14 years with an oligodendroglioma. It's always such a huge encouragement to me and to our whole family to hear about others who are doing well.

So you are in Bend....did you see from some of my other posts that we are in Salem? I spend some time in the Sisters area every summer, riding my horse in the high country. I love it over there.

I'm glad that you found this site and that it's helping you. I have been so greatly encouraged by this site. It's enabled me to have hope and to be able to share that hope with David. I believe with all of my heart that having a fighting, positive attitude is a huge key to beating cancer. It sure makes life better too, to have a positive attitude.

I pray every night for a whole list of people who in this battle. I've been praying for you too. It would be great if you could keep posting updates on how you are doing. I don't always post on this site but I read it all the time.

I like to give updates on David because I'm hoping that it will be an encouragement to others to hear that someone with an anaplastic oligodendroglioma is doing well. I had dinner with David last night and he looked great. He's just finishing up his midterms at Portland State University. He made the Dean's List too. I think that's pretty impressive for someone who had brain surgery, radiation, and who is taking chemo. So it can be done!

Thank you again for your post! And congratulations on your wedding!

Love and blessings,
Cindy in Salem, OR

cindysuetoyou

Woodsymom said:

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.

Hi
Hi, Woodsymom.

I have been thinking about you and Loren and Leigh and your family and your doctor appointment today. I've been praying that you will get a good report.

David's first MRI was not what we expected. It had a spot where they removed the tumor that looked pretty scary. But every MRI after that, the spot got smaller and smaller. It's been over a year and a half and that area is still getting smaller and looking better. I hope that by telling you about our experiences, it might help if your son's MRI isn't what you expected to see.

The latest on David: I had dinner with him last night and he looked great. He just finished his midterms. He made the Dean's List too, which I think is pretty impressive for someone who had brain surgery, radiation, and is currently taking chemo every month.

You mentioned that your son is having some short term memory loss. David has also experienced some short term memory loss too. I don't know if it's from the radiation or the chemo. David definitely has more trouble with his memory--with even holding a thought or finishing a sentence--when he's taking the chemo. It bothers him, but I say if that's the worst thing we have to deal with...then thank God! I don't have brain cancer and I have some memory loss. I think stress can do that to you. So we don't really sweat the memory thing. It's just a side annoyance that David deals with.

I'll be checking back often to hear about your test results. Peace and blessings to you and your family!
Love, Cindy

Rory1987

cindysuetoyou said:

Hi
Hi, Woodsymom.

I have been thinking about you and Loren and Leigh and your family and your doctor appointment today. I've been praying that you will get a good report.

David's first MRI was not what we expected. It had a spot where they removed the tumor that looked pretty scary. But every MRI after that, the spot got smaller and smaller. It's been over a year and a half and that area is still getting smaller and looking better. I hope that by telling you about our experiences, it might help if your son's MRI isn't what you expected to see.

The latest on David: I had dinner with him last night and he looked great. He just finished his midterms. He made the Dean's List too, which I think is pretty impressive for someone who had brain surgery, radiation, and is currently taking chemo every month.

You mentioned that your son is having some short term memory loss. David has also experienced some short term memory loss too. I don't know if it's from the radiation or the chemo. David definitely has more trouble with his memory--with even holding a thought or finishing a sentence--when he's taking the chemo. It bothers him, but I say if that's the worst thing we have to deal with...then thank God! I don't have brain cancer and I have some memory loss. I think stress can do that to you. So we don't really sweat the memory thing. It's just a side annoyance that David deals with.

I'll be checking back often to hear about your test results. Peace and blessings to you and your family!
Love, Cindy

Short-term Memory Loss
I think the short-term memory loss is from the radiation, I've read that it's a sub-acute side-effect of radiation especially if the irradiated area is in the frontal lobe. BTW congratulations to your son for making it in the dean's list.

Raani01

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

aldworth6306

Cindy,
My mom was first
Cindy,

My mom was first diagnosed with Grade III Anaplastic Oligodendroglioma in the right frontal lobe 14 years ago at the age of 36. No deletion (they didn't test for it back then, but she has had testing done since). They told her *maybe* 2.5 years at that time. She had a craniotomy to remove a lemon size tumor, chemo, radiation and a stem cell transplant (using her own cells harvested before chemo). She went 12 years without a recurrence. 12 good years of relatively good health. So it can happen. Have hope. Things are bad for my mom now, but we're thankful for the 12 years cancer-free that we didn't think she'd have. I hope your son can go far beyond the 12 years and beat this. Good luck to him. And hugs to you.

cindysuetoyou

aldworth6306 said:

Cindy,
My mom was first
Cindy,

My mom was first diagnosed with Grade III Anaplastic Oligodendroglioma in the right frontal lobe 14 years ago at the age of 36. No deletion (they didn't test for it back then, but she has had testing done since). They told her *maybe* 2.5 years at that time. She had a craniotomy to remove a lemon size tumor, chemo, radiation and a stem cell transplant (using her own cells harvested before chemo). She went 12 years without a recurrence. 12 good years of relatively good health. So it can happen. Have hope. Things are bad for my mom now, but we're thankful for the 12 years cancer-free that we didn't think she'd have. I hope your son can go far beyond the 12 years and beat this. Good luck to him. And hugs to you.

Thank you!
Thank you very much for your encouragement. I am praying that David would live to see his old age. I am hoping that there will be a breakthrough and they will discover some new treatment that will help with the battle against brain cancers. And I'm hoping and praying that the radiation and the Temodar will continue to work for him and will prevent a recurrence for...forever.

I'm so sorry that things are not currently going well for your mom. I hope that she is getting some sort of treatment and that you have hope that she can continue on with her fight and still enjoy a good life.

David is doing really well. The Temodar is hard but it doesn't disrupt his life a huge amount. Here's a link to his blog site if you'd like to check out how he's doing: http://web.me.com/davidwebb21/Trusting_in_God/Blog/Entries/2011/3/30_Mounds_of_Blessings.html (Hopefully this link works!)

We are almost to the two-year mark of David's brain surgery and diagnosis. (May 8th and May 15th.) Our oncologist told us then that the median life expectancy is 3 to 5 years. So I torture myself by thinking that we are approaching the danger zone. But on the other hand, our oncologist also told us that every day David goes without a recurrence is another day in his favor---it shows that his body is fighting it off, and the longer he goes, the better his odds.

We are going in for our regular 3 month MRI and oncology appt on Wed. April 6th. David considers these appointment just annoying checkups but I have to fight hard to keep from being terrified, and to keep my emotions from being obvious. I don't think these MRIs will ever, ever get easier. I hate when they come due. But every one has been clear so I am telling myself to be positive and expect another good report.

Thank you again for your encouraging post!
Love and blessings,
Cindy in Salem, OR

aldworth6306

cindysuetoyou said:

Thank you!
Thank you very much for your encouragement. I am praying that David would live to see his old age. I am hoping that there will be a breakthrough and they will discover some new treatment that will help with the battle against brain cancers. And I'm hoping and praying that the radiation and the Temodar will continue to work for him and will prevent a recurrence for...forever.

I'm so sorry that things are not currently going well for your mom. I hope that she is getting some sort of treatment and that you have hope that she can continue on with her fight and still enjoy a good life.

David is doing really well. The Temodar is hard but it doesn't disrupt his life a huge amount. Here's a link to his blog site if you'd like to check out how he's doing: http://web.me.com/davidwebb21/Trusting_in_God/Blog/Entries/2011/3/30_Mounds_of_Blessings.html (Hopefully this link works!)

We are almost to the two-year mark of David's brain surgery and diagnosis. (May 8th and May 15th.) Our oncologist told us then that the median life expectancy is 3 to 5 years. So I torture myself by thinking that we are approaching the danger zone. But on the other hand, our oncologist also told us that every day David goes without a recurrence is another day in his favor---it shows that his body is fighting it off, and the longer he goes, the better his odds.

We are going in for our regular 3 month MRI and oncology appt on Wed. April 6th. David considers these appointment just annoying checkups but I have to fight hard to keep from being terrified, and to keep my emotions from being obvious. I don't think these MRIs will ever, ever get easier. I hate when they come due. But every one has been clear so I am telling myself to be positive and expect another good report.

Thank you again for your encouraging post!
Love and blessings,
Cindy in Salem, OR

After 14 years I still get
After 14 years I still get terrified everytime MRI day approaches. I'm sick to my stomach all morning waiting for the results.

A friend wrote this to me when we got the bad news a couple days ago. I've been hearing her words over and over again in my head. Her mom had breast cancer.

"When my mom was first diagnosed with cancer and the outcome didn't look so good, she and I had a conversation about how you can't stop planning for good things in your life. She said something to me about how while this moment was horrible, terrible, and not part of her plan, she get through it because she knew there was another side and she would come out the other side eventually. But she couldn't stop planning for good things in the future... because if she just threw up her hands and just expected the worst or gave up hope in any way, then that was tragedy. Just because bad things happen, it doesn't mean good things won't happen. You can't pick what happens to you, but you can decide if you are robbed of your hope. You have to imagine the life you want and truly believe you will get there."

You can't pick what happens to you, but you can decide if you are robbed of your hope. I keep telling myself that. As hard as it is right now, I've got to keep hoping. Can't stop planning for good things in the future.

I hope David's MRI is clear on the 6th. Good things ARE in his future. Keep telling yourself that. Imagine the life you want for him, and truly believe he will get there.