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Grade III: Anaplastic Oligodendroglioma lifespan?

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

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

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

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

Thank you to anyone who can encourage me.

Woodsymom's picture
Woodsymom
Posts: 13
Joined: Jul 2010

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.

Woodsymom's picture
Woodsymom
Posts: 13
Joined: Jul 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.

l6blue
Posts: 1
Joined: Aug 2010

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.

lkollros
Posts: 2
Joined: Aug 2010

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.

HOIBC
Posts: 3
Joined: Jul 2012

Hello. After experiencing some mild partial seizures and headaches worsening over time I had a CT scan to rule out stroke and a tumor was found in my right parietal lobe. I feel fortunate that it was operable and surgery was done in May.I was told 99 % resection. I finally got the pathology result from the surgeon last week.He said it was grade 4 glioma. His only other comment was to say "They always come back". From a lab requisiton I deciphered that it was an oligo/astro which although not identical to anaplastic oligodendroglioma they have some features in common as well as similar recomended treatment. I left the surgeon's office devasted thinking my life expectancy would now be measured in months not years (from some statistics he quoted). The stories on this forum give me reason to hope. I have my first oncologist appointment next week and have many questions that I hope will be answered.In the meantime it's one day at a time. I am fortunate also to have come through surgery with no deficits and am in good health generally at 59.I won't bore you with any more details but have to thank you all for posting your inspiring stories. Good luck to all and I will check back to see how everyone is doing. Maybe together we can make the doctors see that we're people not statistics.

Toshy's picture
Toshy
Posts: 23
Joined: Jul 2010

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!

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

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

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

swankor
Posts: 1
Joined: Oct 2010

Cindy, so glad to hear that David is doing so well!!! This may sound crazy, but did you work at Secure Horizons in January of '99? I think I may have worked with you...

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi!

No, I never worked at Secure Horizons. I've been teaching at a private school for over 25 years. Are you in Salem also? :)

Love and blessings,
Cindy

Anderdw
Posts: 1
Joined: Oct 2010

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.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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.

Jess1506
Posts: 1
Joined: Oct 2010

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

kirk192
Posts: 2
Joined: Nov 2010

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
Posts: 1
Joined: Dec 2010

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
Posts: 2
Joined: Dec 2010

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 retard 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
Posts: 4
Joined: Dec 2010

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's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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
Posts: 2
Joined: Nov 2010

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!

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

isamara
Posts: 1
Joined: Jan 2011

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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.

ssaia2
Posts: 1
Joined: Jan 2011

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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.

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

I was diagnosed Last june 2010. I have the same belief as you. It's all in Gods hands. My doctor just told me yesterday that htis is something i will have for the rest of my life. i will take temodar and seizure meds for life also. They can never remove it. he does not give life span, he says thats up to God, not him, but says some people can live many years. this was not good news to me that it would be with me for life. i was a school bus driver and loved my job, this has totally changed my life. I just pray every nigh for at least 5 more years to watch my daughter grow up.

Bodrul
Posts: 3
Joined: Jan 2011

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

Woodsymom's picture
Woodsymom
Posts: 13
Joined: Jul 2010

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.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

Bodrul
Posts: 3
Joined: Jan 2011

Hi Cindy,

I almost forgot I was registered on this site. Thanks for your kind message. I wanted to know how your son is doing? I was 26 in January when I was diagoned. 27 now. i'm going through the same thing. your son is the only case I've found similar to mine. I have the same tumour and grade and the treatmentsand were almost the same age. How is he doing?

Bodrul

Bodrul
Posts: 3
Joined: Jan 2011

Hi Cindy,

I almost forgot I was registered on this site. Thanks for your kind message. I wanted to know how your son is doing? I was 26 in January when I was diagoned. 27 now. i'm going through the same thing. your son is the only case I've found similar to mine. I have the same tumour and grade and the treatmentsand were almost the same age. How is he doing?

Bodrul

Beckymarie
Posts: 358
Joined: Aug 2009

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

LoranHaugsted
Posts: 1
Joined: Jan 2011

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's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

Girl2010
Posts: 26
Joined: Jan 2011

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.

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Woodsymom
Posts: 13
Joined: Jul 2010

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.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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.

MsTigrLadi
Posts: 1
Joined: Feb 2011

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
Posts: 3
Joined: Feb 2011

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

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

alison4444
Posts: 2
Joined: Feb 2011

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
Posts: 2
Joined: Feb 2011

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.

Ro_711
Posts: 1
Joined: Feb 2011

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
Posts: 3
Joined: Feb 2011

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).

Raani01
Posts: 68
Joined: Mar 2011

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
Posts: 3
Joined: Apr 2011

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.

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