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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.

hestrada
Posts: 3
Joined: Feb 2010

I read about your son, and it really broke my heart, my brother was diagnostic in December 2009 with glioblastoma and his survival will be 6 months, everyday that pass we want to make a quality day with love, I always whisper him that I love him, we have not give up, he does not even know he that he is sick because he was a mental disorder, he does recognize us then he forget us at first I was thinking he had Alzheimer'S, it is a bless that your son might live longer than my brother and everyday thank God for see him wake up everyday, ask him for courage.
Good luck and rembember you are not alone.

PBJ Austin
Posts: 347
Joined: Mar 2009

You doctor is quoting statistics but your son is an individual person so the stats don't apply. A year ago my then 25-year-old sister was diagnosed with Anaplastic Astrocytoma 3 and she was given 3-7 years survival. We were also told it could happen in as little as 2 years.

She began treatment of radiation and Temador last spring. At first there was no change so they stepped up the chemo, and that's when she took a turn for the better. Her MRI last week showed no signs of cancer at all!! The doctor is very puzzled and declined to say she's in remission since he can't figure out what is going on. The chemo will continue through May and if there are still no signs of cancer the treatment will be suspended.

I know how hard it is but you must learn to live in the present and celebrate every small victory. They are coming out with new and better treatment all the time so I don't care what you have been told, there most certainly is hope for your son.

All the best to you, and we are always here if you need us.

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

Thank you for replying to my post. I don't really know how this site works so I hope everyone can see this and know that I appreciate your comments and support. PBJ Austin, thank you for reminding me that the drs go by statistics and not by individuals. We personally know someone who is a ten year survivor of pancreatic cancer, and his dr was absolutely positive that he would be dead in 6 months at the longest. He's fine today with no sign whatsoever of any cancer. So I know that the drs can't be sure of lifespans.

PBJ, I am SO GLAD to hear that your sister is doing so well! I am so glad for her and for you and your whole family. That is great news, and also it's a huge encouragement to me.

We are doing good as far as living life to the fullest. I am so proud of my son. He is working, playing basketball, working out at the gym......my son is very brave and he is believing that he could beat this. Our whole family believes this too and we are all standing with him. I can't even begin to imagine how awful it would be if no one believed with you that you can beat it. I pray every day that God does a miracle and my son does beat this. I also pray for hope and strength for us. I personally started out good...all strong and positive. It seems like in the first part when we were hearing all the terrible stuff, going thru surgery, radiation, etc, I was in crisis mode and I was super strong and fighting hard. Now that it's back to daily life, I feel like I am unravelling. I have to fight hard every day to be positive and stay strong and keep hope. I have been researching all over the Internet and I think it's hard on me. But it's not about me....it's about my son and our family and making sure that we are all positive and still fighting hard and loving each day that we have.

Thank you again, to all of you.
Cindy

Eugene Velez
Posts: 1
Joined: Mar 2010

The Love of my life, my wife just had her operation this past Saturday 3/13/10 and the surgeon was able to remove all of the tumor in the right frontal lobe. The following Sunday they gave her another MRI and did not see any remnant of the tumor. Currently she has no side affects from the operation and seems to be acting normal. Now my question is, has anyone used an alternative or found an alternative to radiation? I've read a lot of different views on radiation therapy and it seems to me that in this particular situation radiation does more harm than good. Does anyone think the same as me or have a view on this.

dwcox
Posts: 1
Joined: Mar 2010

I had surgery for a left frontal lobe oligodendroglioma in Sept. 2003, then I had a six month course of Temodar, an oral chemotherapy. It seems to have been very effective in killing any remaining cancer cells. No additional tumor growth since the surgery.

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

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

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

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

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

Your post was a blessing of hope for me.

Shampals
Posts: 2
Joined: Oct 2012

Hi Velez,

I was little curious to hear from you the present situation of your wife.
My wife is diagnised with Grade 3 Astrocytoma and is now operatied.Tumor not fully removed but advised for radiation therapy for 6 weeks (5 days a week)..

Would you please narrate your experience until now?.

Best wishes for you too!!Thanks

-Shambu

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

That is right. NO signs of cancer! Healing, healing, healing! :)

We just cannot accept everything doctors tell us, because no two patients are alike. PMJ is right. Treatments are improving and QUALITY lifespans are lengthening. We have to live moment by moment, embracing the days that are great! At the beginning of my husband's diagnosis, I too wanted to know statistics and how long. Doesn't matter, because it does not apply. None of us are guaranteed tomorrow, so carpe diem!

Have hope and faith!

SH2012
Posts: 3
Joined: Jul 2012

My wife 49 diagnosed of Astrocytoma III in two locations, left frontal cortex and in thalamus. Doctors have initiated radiation and she has completed 4 weeks. Feels head ache and nausea now. Due for MRI soon and sure will add Temedol. She seems to be holding fair. Feels weak and tired but we are praying and staying positive. Can you give me some advice on the road we are travelling? What should we expect interms of effects and sideeffects of this treatments? I am truly inspired by the folks in this forum and has infused an extra strength to fight.
Thanks

dixieangelbaby7
Posts: 5
Joined: Oct 2011

hello, I am sorry to hear about your situation and i understand the frustration, maybe u can have and opportunity to read my story b.c it's simular to your sister. I have 26 I have a navel sized tumor with a golf ball cyst removed from my from right lobe. I went through 37 straight days of radiation and 150 mg of temadar every day as well, i just finished about 2 weeks ago, they told me i would be on the temadar at 300 mg for 5 days off 28 for a year, but i got my first mri back on friday and the brain cancer is back and spreading, at this point they are going to see if i'm eligilble for a new treatment called gamma knife, not sure if you have looked into this yet, there are only a select few cancer facilities who perform in the usa, and a select few in the world. but i am lucky enough to live in a state that offers is. here is a little information on how it works and what it does. http://www.gamma-knife-surgery.com/, Wikipedia - Gamma Knife

http://en.wikipedia.org/wiki/Gamma_knife

ASTRO
American Society for Therapeutic Radiology and Oncology
http://www.astro.org/

Congress of Neurological Surgeons

http://www.neurosurgeon.org

American Association of Neurological Surgeons

http://www.aans.org

National Brain Tumor Foundation

http://www.braintumor.org/GeneralMenu/

Acoustic Neuroma Association

http://anausa.org/

Trigeminal Neuralgia Association

http://www.fpa-support.org/ The Gamma Knife® isn't really a knife at all, but radiosurgery - a non-invasive neurosurgical procedure that uses powerful doses of radiation to target and treat diseased brain tissue while leaving surrounding tissue intact. This state-of-the art technology allows physicians to operate on brain lesions often considered inoperable. Gamma Knife surgery treatment offers new hope for patients with brain tumors, vascular malformations and functional disorders.

I am with you after everything we have been through god is the only one that has the answers. I wish you only the best of luck if you ever need anyone to talk to or would like updates please email me any time dixieangelbaby7@aol.com I would love to know how your sistere is doing, i will keep you all in my thoughts and prayers.

god bless you all..

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

Thank you for replying to my comment. I am so grateful for the support, especially from people who really know what I am going through.

I am so sorry to hear about your brother. He is very blessed to have a sister who loves him and cares for him. Even though the drs said 6 months, please don't believe them. They really do not know for sure. I have a friend who is a ten year survivor of pancreatic cancer. He is totally cancer free to this day, and his dr had just about guaranteed he would be dead in 6 months at the longest.

I will be praying for you and your brother...for a miracle, just like I am praying for a miracle for my son.

Stay strong, and thank you for encouraging me.
Cindy

arkansasbrains's picture
arkansasbrains
Posts: 38
Joined: Oct 2009

my husband was diagnosed with an grade 2 oligodendroglioma in dec. 2008. after his first surgery, and complete resection, he did get back to normal. like you said, it was like it never happened! except for the occasional seizure. the statistics that i read after his second diagnosis of a grade 4 glial neoplasm looked not as hot as his original tumor. the statistic rate from the american cancer society was from a few years back, and it seemed that they don't really factor in things like complete resection, which from my understanding, makes a huge difference, general overall health (which sounds good for your son), age... any of it. statistics are scary things that you tend to take so literally. i know it scared the hell out of me. it sounds like your doctor is really preparing you for the worst. which is okay, i guess... just be sure he doesn't rob you of hope. i mean, everybody is different. and since those statistics are dated, they haven't considered new advancements in all sorts of treatments either. it sounds like you and your son have a lot to hope for. please let me know if there is any way i can help.
gesundheit.
sydney

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

Thank you for your encouragement. I really, really appreciate it. I also replied earlier but I don't really have this discussion board down very well.

How is your husband doing today? I have heard that grade II is a whole lot better than III, but that this type of cancer is more unpredictable than other types. I guess that can be good or bad......

I think that you are absolutely right....the statistics are outdated. I've been doing a lot of internet research, which has been very terrifying for me. But our radiologist told me that advances in cancer treatments are going forward so fast that by the time you read it on the internet, it very likely is outdated already. She also said that she believes that there is a lot of great research going on all over the world and a major breakthrough in cancer treatment could be just around the corner. Our oncologist is heading up several clinicals for oligodendrogliomas and they sound promising.

I do think that our dr is preparing us for the worst, but he went a little overboard. We totally felt like my son would be dead in 3 years. Our entire family was absolutely grief-stricken. We have 3 other children, two married, one not, and we have a large extended family too. We were all crying our heads off. But our radiologist gave us some hope...and we were so, so, so very grateful. We started going forward from that point on. When we saw the oncologist last, he asked us how we were doing, and if we had any questions or concerns. I told him that we were cool, except that we did not want him to take away our hope. He seemed surprised, and he said that there is lots of hope. Quite a different story from the first several visits. I think that he said that because the MRIs have all looked really, really good.

My son's first MRI after surgery showed kind of a greyish white area, if I remember right, where the tumor used to be. That seemed to be what they expected to see, and they were not concerned. So then the next MRI, 2 months later, after chemo and radiation, showed kind of a white area where the tumor used to be. It looked like a scar to me. They suspected it was either scar tissue, blood, or just a cavity from the tumor. They didn't know. The contrasting agent did not show that there was any tumor. They suggested that we hold off on starting the 5 day on/23 days off of Temodar and see what happened with that spot....if it grew a tumor or not. They thought that the Temodar might prevent a tumor from starting up and then they wouldn't know what that spot was. But they told us it was our choice. My son opted to start the Temodar, and I was very glad. So then the next MRI showed no tumor growth whatsoever. They've used that contrasting agent on every MRI they've done, and have not seen any tumor, thank God!

Anyway, every time we have seen the dr, he says that the MRIs look great and that he is very pleased with how well my son is doing. The visits take about 15 minutes. But the time between the MRI and the drs reading it and then reporting to us are just hell for us. Unbelievably hard. I am sure that you can relate. My son has his next MRI on March 10th and I'm already tensing up and losing sleep. I wonder if it will ever get easier.....

Thank you again for your reply,
Cindy

arkansasbrains's picture
arkansasbrains
Posts: 38
Joined: Oct 2009

well, it sounds like you all have everything under control. it's just your oncologist who needs to work on the bedside manner. it funny about your radiologist, because the one we saw for luke's (my husband's) treatment spoke with much more positive language than any of our other doctors (i.e. neurosurgeon, neurologist, oncologist....etc). perhaps they have special training for that. ha!
i know it's hard not to live mri to mri. i find myself doing it sometime. but then i think that if it's just a routine checkup, and we're not having more symptoms or anything, that things are probably okay.
please keep us updated as to the results of your son's mri. we're glad for good news, and always around.
luke is doing well. thank you for asking. he gets stronger everyday.
check out our "about me" page if you have some time. we can share information.
.sydney

bkallaus
Posts: 1
Joined: Mar 2010

Hi! My name is Bethany and I am new to this site.

In August of 2009 my husband had a total resection of a tumor in the right front temporal lobe. After pathology tests were run we were told it was a Grade II oligod....can't think of the spelling right now. No further treatment was needed. We went home 2 days after surgery. He then developed a MRSA infection and required 2 wash out surgeries and several rounds of antibiotics. Everything was going great and he was back to work. He's 43 and very healthy otherwise - hasn't missed a day of work in over 6 years.

Just a couple of days ago he had a 4mo. out MRI check up. The tumor has returned and has grown into the other side of his brain and is 3 inches in size. Our surgeon said he's never seen anything like this after a total resection - that size in only 4 mos. time. The neurosurgeon feels it's too risky to try and operate to remove this one because of location. So - he's going in for a biopsy next week to determine the grade now. He will then start radiation and chemotherapy.

What can I expect with the radiation and chemo?

Thanks for any and all information. Right now my head is just spinning in overdrive.

Bethany

sue Siwek
Posts: 281
Joined: Jun 2009

don't know where you are getting treatments. will say run don't walk to the nearest teaching and research hospital. my husband is a 10 yr survivor of a grade 111 astrocytoma. went to henry ford hospital after being told at our local hospital that they couldn't do much for him. check the best hospital for this in your state and go there.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Sue, this is great news to hear of 10 year survivorship! Doing cartwheels and heel clicks. (Sometimes I feel like I repeat myself on these boards, so I do apologize.) Hubby is in round two of brain cancer. His AAs were diagnosed in August 2009. (Previous malignant tumor was a mixed germ cell on hypothalamus in 1986/87). He is responding well so far to Temodar. Radiation showed more than 50% shrinkage, and we are hopeful this Temodar is going to knock these bad boys on out! Duke has been the best for us, and it was our 2nd opinion.

sue Siwek
Posts: 281
Joined: Jun 2009

will add that you and your husband will be spinning for quite a while. this is quite a trip that you will be on. seek help from your primary care dr. i.e. for you a anti-depressant. check periodically with husbands neurologist how it is doing for he may need an anti-depressant as well. he will no doubt be put on a steroid that will change his personality and throw you for a loop. eventually things will probably calm down. you are the advocate, sorry but you will have to keep track of everything going on. question everything! everything! you must understand because he will not be able to or will be so consumed with himself(rightfully). this is a frightful time for both of you. please get support from family and friends, you will need it. hopefully you will come out at the end of this with a good result as we have. best of luck will be thinking and hoping the best for you.

arkansasbrains's picture
arkansasbrains
Posts: 38
Joined: Oct 2009

i am very interested in the pathology of your husband's tumor, as something very similar happened with my husband this past year. please let me know if you would like to swap some information. our doctors have said they have never seen anything like this before.
please check my "about me" page for all of our details if you would like.

.sydney.

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

Hi, Bethany.

I agree with Sue's comment about making sure you are at a research or teaching hospital. We are at the Oregon Health Sciences University. Did you get more than one opinion on whether or not your husband could have surgery? I'm asking because I read about a gal whose doctors told her that her tumor was inoperable. She had her MRI checked at the University of California at San Francisco and their neurosurgeon read the MRI a little differently and felt that she could remove it, so they went ahead and the surgery was successful--they were able to remove the tumor. I know that this was probably an exceptional case, but I think a second opinion is a good idea.

I also wanted to tell you about my son's personal experience with radiation and chemo. (Temodar) Will your husband be taking Temodar, and wlll he take it while he does radiation? I think everyone's experience with radiation and chemo varies, but I hope that hearing about what David's experience was like will be a help to you.

We dreaded radiation. But we had a marvelous radiologist. She told us that people were sorry when their radiation was done because they missed coming to her clinic. I thought, "Yeah, right," but I really was sad when our 6 weeks were up, that we wouldn't be seeing her any more. She was the first person we saw in connection with David's tumor who gave us any hope whatsoever. She was very positive and understanding and she took all the time we needed to explain stuff to us. I love her and I still pray every night that God will bless her.

David did 6 weeks of chemo and radiation. He lost his hair where the radiation beams went in. It made an odd pattern on his head, so he went ahead and shaved the rest of his hair. He did not lose his eyebrows or eyelashes or any facial hair. He was very bothered by his hair loss. He felt like it made him look like a cancer patient, which of course he was. He hated looking in the mirror and seeing his bald shiny head. But his hair all grew back in after his treatments, and it looks great.

The biggest problem David had with radiation was the incredible fatigue. He was really wiped out. He was in great shape before they found the tumor. He played college basketball and worked out daily at the gym. But that didn't seem to make a difference. He finished his treatment in July and he still is not 100% over being tired. But he still takes Temodar 5 days a month, and that could be what now makes him feel tired.

One time while on radiation, David got severe joint pains in his knees and feet. He had to go to the hospital. They didn't know what caused it. I think it was the chemo. They gave him Dilautin which basically knocked him out. But he never did have that joint pain again.

When David had the radiation treatments, he would close his eyes and he could see bright blue beams under his eyelids. He said that he thought it was the radiation beams. He also could feel it in his teeth. It didn't hurt--he could just feel it. He also noticed a funny smell. But the radiation wasn't painful. He never had his skin get burned or anything like that.

Later in his treatment, he said that he felt like he was thinking slower and he couldn't remember stuff. He felt like talking was a huge effort. These feelings went away as he recovered from the radiation treatments.

They made a special, freaky mask for David to wear. It was rigid plastic with little holes in it. He would put the mask on and they would strap the sides of the mask to the table. They did that so everything would line up exactly so the beams would be precise. HIs tumor was located close to his optic nerves and they didn't want to fry his eyesight. Radiation is an amazing thing....like science fiction.

David didn't have any aftereffects from the radiation, like memory problems or personality changes or coordination issues. David has struggled since the day of his surgery (May 8th, 2009) with headaches and constipation. He still has trouble with both things. He has seen a headache specialist and a stomach doctor. The chemo and the anti-nausea stuff give him headaches and constipate him. He has tried every kind of laxative known to man and he still has trouble. It's better than it used to be, though. I didn't realize that constipation could be so hard to treat and it could make you so miserable. It's been a big problem for David. I don't believe that the radiation caused this. I think it's the chemo that does it.

One thing that surprised us....David actually felt worse for a few weeks after the radiation was over. I guess it builds up in your system and it takes a while to get over it. But please hang on to the knowledge that better days will be coming soon. It felt like months and months of treatments, but it was only 6 weeks. And now it seems like years ago that he did radiation, and it's been less than a year.

Overall, the radiation treatments were not as bad as we had expected. Not a walk in the park, but it could have been a lot worse. David seems pretty much the same as he was before the doctors discovered the tumor, except he doesn't have the same level of stamina. If you met David, you would never know that anything had ever been wrong.

Please keep us posted on your husband's progress.

with love and blessings to you and your husband,
Cindy

poe51987
Posts: 2
Joined: Apr 2010

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

artafera
Posts: 1
Joined: Jun 2012

To poe51987: I found it very interesting that your story is practically identical to our story. If I could only talk to you and find out where you are now, this would be most helpful. My husband too had a stroke during his 2nd surgery at the age of 43. He has now had 3 resections and a surgery to place a shunt last February. We are at the end as my husband no longer wants chemo or any further surgeries. As of his last MRI in May, he has developed another lesion in the frontal lobe measuring at 3cm already!! I am really scared now and don't know what to expect. We have two daughters ages 11 and 8 who have accepted the outcome of this long journey. It has been 12 years.

misskittycat68
Posts: 3
Joined: Jul 2012

my husband was 35 ( 1998) had his first surgery they said removed all of it followed by radiation 6 weeks. He just had first recurrence end of april this year ( april 27th 2012) he is going to have re-radition for 6 weeks and temador up to two years or longer. He came through the first surgery with out any deficits but this time he has partial paralysis in left arm and leg. Its been almost 14 years. Good luck to all of you and God Bless!

Shampals
Posts: 2
Joined: Oct 2012

Hello,

My wife is presently diognised with anaplastic oligodendroglioma grade 3 tumor after biopsy and partial tumor removal on 4th October 2012.

She is now advised for 6 weeks of radiation therapy.

Having seen your positive stories and hopes,i would like to have a discussions with you to boost my wife confidance on battling with positive attitude.
Your valuable inputs and confidance is important for us.

My Mail ID - yshambulingappa@yahoo.com

Good luck to you and your hubby.God Bless you all!!

Regards,
Shambu

dixieangelbaby7
Posts: 5
Joined: Oct 2011

hello,
I am experincing the same thing, i had my tumor removed about three months ago from the same area front lobe. i went through 37 days straight of daily radiation and Temador, had my first mri done two weeks after completing treatment found out another tumor different spot cancer has spread to another part of my brain. I would love to know what the outcome is, to see if my doctors are telling me the same things, or vc. vs. my email is attactched below. i will keep your family in my thoughts and prayers god bless you.

xoxoxxo
natoshia

dixieangelbaby7@aol.com

oilgodendroglioma83
Posts: 2
Joined: Nov 2011

I had surgery on feb 14 this year and I have not felt the sme sinces this is very scary

cgp603
Posts: 3
Joined: Feb 2014

Hi,

Are you talking 2014? If you are I had an oligo grade 3 removed in September, it took a while, but I feel great now. I'm on Temador and haven't done radiation yet. Give it time, you will feel better. Let meknow

Cathy

mark7
Posts: 23
Joined: Apr 2005

look for my story as (survivor of oliogo)this is a faith booster for what you are going through i will pray for strength and peace for you and your family GOD BLESS YOU.

kayla77
Posts: 1
Joined: Mar 2010

Hey all. I’m new to this site. My husband was diagnosed with grade 3 oligoastrocytoma this week. He just turned 31 yesterday. He had a seizure while mountain biking which caused him to crash. 2 days later, they performed brain surgery and the dr.’s think they were able to remove the entire tumor. My question is… besides traditional chemo and radiation, has anyone else experienced any alternative treatments? Our oncologist suggested us being a part of a clinical trial in which they would give him Temadar (usually a stage 4 drug) to basically be a step ahead of the tumor. There’s also other natural medicines I’ve looked into. We’re going to be deciding his treatment next week so I thought I’d go ahead and put the question out there. I’m scared and don’t know what to do. We have a 17 month old daughter…I need him to be around a long time to be a father for her.

Thanks

sue Siwek
Posts: 281
Joined: Jun 2009

coming at this from a 10 yr. survival of my husband. i would tell you that you must make a choice. either oncologist or go with natural medicines. our 10 yr survival has been with traditional medicines. you must be careful about combining traditional and natural medicines as they do not always get along. you need him to be around i understand but be sure that you are at a research and teaching hospital because it is your best chance. 10 yrs ago we drove for over an 1hr 1/2 to get the best care. it was worth it. my husband was in a clinical trial and it shrunk his tumor. not with out some problems but he is with us. i might add that he was also diagnosed with parkinsons(a separate brain disorder but complicating his recovery) please before you add anything natural or holistic check with your oncologist and neurologist.

j_waffles
Posts: 22
Joined: Jun 2010

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

cindylee219
Posts: 2
Joined: Nov 2010

My sister was just diagnosed with this cancer she had a resection and flap removal and mennigitis..now she is starting her radiatioin and then her chemo. I see where u say your dad did alternative/natural therapay I am interested in this can you tell me about it? thanks so much

Eng
Posts: 11
Joined: Jul 2011

Hello - Can you please tell me which type of traditional medicines to used?

Thx

cdavis07
Posts: 11
Joined: Sep 2010

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

poe51987
Posts: 2
Joined: Apr 2010

My husband was diagnosed in 2003 and had the same treatment as your son. We had five good years before the first reappearance of the oligodendroglioma. He has now had it a total of five times and is now considered terminal but we did have those good years and it is not uncommon to have that much time in fact in my own research it seemed to follow the same pattern of time in most of those effected by this. My husband had his last surgery three weeks ago tomorrow and he is starting avastin which stops the growth of new blood cells and slows down the growth of tumors and has in some cases nearly stopped the growth of some kinds of brain cancer. I am hopeful but realize this is Darren's last hope of any more time. I hope the best for your son and my heart breaks for him. Good luck and God bless.
Liz

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

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

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

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

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

love and blessings,
Cindy

dixieangelbaby7
Posts: 5
Joined: Oct 2011

thank you for telling me about your son.
my surgeon was convinced he got all of my tumor out i was told that it would come back withing 3-5 years, i have just completed my treatment, and not even two weeks from being done, i have yet another brain tumor in the brain in another area, my first one was at the front right lobe of my head this one is in the back. It does suck, i hope eventually there is a cure.

i hope your son continues to do good and stay cancer free,
you will be in my thoughts and prayers..god bless you and your family

many blessings,
natoshia

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

Hi, Natoshia.

Thank you for writing to me. I'm so sorry to hear about your situation. I hate writing that because it seems so impersonal, but I mean it with all of my heart.

The post that you commented on---I wrote that over a year ago. Since then, things have changed for David. First of all, he did really good until July of this year--we thought that maybe he was going to beat this. But then he had two seizures the first week in July. Those seizures were the beginning of a tough time for us. The drs found "disease progression" and we started a new journey....first, the treatment that our doctor wanted to do was denied by our insurance company. Then after 6 or so trips to NIH in Maryland to try a clinical that had no effect (and wasted time), our insurance reversed their denial but in the meantime, the tumor grew bigger. We didn't do the treatment that the NO originally wanted to do...our NO thought that surgery would benefit David more, so David had another brain surgery a few weeks ago....now David is recovering from that second surgery and we will meet with his NO this Wed. to see where we should go from here---I'm thinking that David will probably need to start some sort of chemo cocktail.

Through all of this, David has remained in good shape---no deficits or anything like that. Still living in his apartment, doing things with friends and family. He did have to take a break from college--classes started the week he had brain surgery. He tried to go back to college but 6 days was not enough time for him to recover and build up his stamina for all the school work he needed to do. Not to mention that he has to walk everywhere now, including to and from college, since he can't drive for a while due to the seizures.

So even though David is not cancer free (they couldn't do a total resection this time---can't get all the microscopic tumor cells anyway) he is still continuing to do good. His biggest problem is his recurrent headaches. They are pretty bad. We hope that as he heals from the surgery, the headaches will lessen and maybe even totally go away. We are taking it one day at a time....

What treatments have you done so far? And when were you diagnosed? Where are you being treated? Please forgive me if I am asking too many questions. If you had progression right after treatment, I would think your doctor would try another treatment. David has had radiation, two surgeries, he's taken Temodar, he tried Sutent---that was the chemo from the clinical trial that didn't work. David's NO says he still has options left. I think he may take carboplatin next....but I don't know. I am wondering if your doctor has mentioned these options to you? I don't know what you are battling or what grade it is, or what treatment(s) you have had...but I am hopeful that you have other options that will work for you.

Please let me know how you are doing. I will be praying for you, Natoshia, every night, like I do for David and for many people on this website. Please fight hard and hold on to hope!

Love, blessings, peace, and healing to you,
Cindy in Salem, OR

oilgodendroglioma83
Posts: 2
Joined: Nov 2011

Feb 14th of this year I had oilgodendroglioma grade 2 removed from my brain Im still feeling bad and I dont think they were able to get all of the cancer out so Ive taken the chemo I dont think it worked cause there still more cancer I might need to do radation but im trying to see if theres some thing elsa I wish there was more help Out here for sick people cause I dont have any family and Im 28 what are we suppose to do

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cindysuetoyou
Posts: 508
Joined: Dec 2009

Steve, your note breaks my heart. I cannot imagine going through what you are dealing with, without the help, support, and love of family. I hope that you have good friends who can help you.

A grade 2 should be responsive to chemo. Are you taking Temador? My son was cancer free for over two years while taking Temodar. He is battling a recurrence right now, but his was a grade 3 and he did not have the gene selections.

I will be praying for you, that God will bring people your way who can help you, and that your treatment will be effective.

Love and blessings,
Cindy in Salem, OR

Devman
Posts: 5
Joined: Jul 2011

Cindy,
Let me introduce myself, Julie, my 22 year old son has a grade 4 GBM, he has had all the stages of brain cancer. His first surgery was Oct 2010, he had the tumor removed, no treatment at that time. June of 2011, he seizured again and again he had surgery to remove the tumor. At this point we switched Doctor's. He is now being treated at HOAG Cancer Center in Newport Beach CA. He has undergone 6 weeks or Radiation and is currently on Temodor. One thing I suggest you look into is the Gamma Knief procedure, the reason I switched Doctor's is beacuse I wanted someone who did this procedure. He had his first MRI since the GK and his brain is clear! Anything that can prolong their life is a good thing. I was told he had 17 months to live prior to the GK. I believe this procedure will help the cancer from spreading throughout the brain. His Doctor is very optimistic that Devin will stay clear for 5 years or longer...

NEVER GIVE UP, HOPE IS ALL WE HAVE!!

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

Thank you---I will ask my son's doctor about the gamma knife. I don't know much about it but I believe it's a type of radiation, and I don't think David can have more radiation. I asked our doctor about trying radiation again and he said it would be like throwing sand at it. I think he said that because the tumors are diffused through brain tissue?

I'm so glad to hear that it helped your son! I love hearing good reports about different treatments helping people.

Love and blessings,
Cindy in Salem, OR

tylerbeam1
Posts: 2
Joined: Mar 2004

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

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

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

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

Hope this helps in the least bit.
Tyler

curly123
Posts: 4
Joined: Nov 2010

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

joan_doyle
Posts: 29
Joined: Apr 2010

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

Ale89
Posts: 1
Joined: Apr 2010

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

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

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

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

Hope this helps in the least bit.
Alex

April74
Posts: 1
Joined: Jul 2010

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

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

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

OleMan
Posts: 1
Joined: Jul 2010

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

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Woodsymom
Posts: 13
Joined: Jul 2010

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

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

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

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

Hello, Woodsymom.

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

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

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

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

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