Grade III: Anaplastic Oligodendroglioma lifespan?

penzo

oligodendroglioma
I have a brother who was diagnosed with an oligodendroglioma at the age of 45 - he was completely asymptomatic until he had a seizure when out one evening having dinner. They operated and removed the tumor - he underwent Radiation for 7 months. The last six years he has been absolutely fine taking only epilepsy medication. Last week he went for his annual check up and they found a new tumor - he had the surgery this morning and the Surgeon said it was very agressive grade 4 - can any one cast some light on prognosis with this second tumor?

penzo

mirjo said:

I was diagnosed in 1998 with
I was diagnosed in 1998 with a right frontal lobe oligo when I met with the surgeon, he offered a best-case of a 10 year survival rate. The radiation oncologist offered five. Neither was acceptable to me since I had two small children at the time and couldn't bear the thought of leaving them to grow up without me. Fortunately, I was referred to a brain tumor treatment center that didn't offer numbers, just good long-term survival rates with that particular tumor and the treatment regimen they used. Chemo & radiation turned out to be the one-two punch it was promised to be and I have been in remission since 2000. Everyone is different and therefore responds differently to medications, but medicine is really a whole lot of guesswork, backed by a little but of science. If you think about it--all the things we know to be medical facts now, came to be because someone took a chance on a wing and a prayer and determined it to be so.

Temodar came on the market near the end of my chemo cycles, so I was never given it. Don't ever be afraid to seek a different doctor,if you feel you aren't getting what you need from the one you have. I don't mean you should doctor shop for the diagnosis you want, but they all have different opinions about which meds to use or try. Temodar, which seems to be the preferred option these days, may not be effective for everyone. There is no reason you can't pose that question.

I wish the best for you and your son.

thank you
Mirjo - i have just seen your posting and am very grateful for your insight and advice. We are from Africa but I will certainly look into Temodar treatment and question the Doctor further. Sometimes we lay people are too afraid to question the Doctor.

penzo

cindysuetoyou said:

Thank you!
Thank you so much for your post. I can't tell you how much it helps me and encourages me to read posts like yours. When I feel terrified about the future, I re-read these posts and it helps me to regain my strength and hope.

We are thanking God for David's continuing good reports and are beginning to have hope for a long life for David.

Thank you again--love and blessings to you,
Cindy in Salem, OR

oligodendroglioma
i am new to the site and i read all the postings when posting about my brother this morning - I read that NO Dairy and double checking for food with hormones and additives and staying away from them helps? There are some wonderful positive experiences that help when trying to deal with this disease! Thank you all

anvar

hi people my brother has
hi people my brother has oglidendrioglioma 3rd grade, he is actually treated in germany
he is just 19, and i don't want to lose him because i love him too much. i am ready to do everything for him, can u please give me information, about treatments avilable and treatment are being prepared?
i would really appreciate if you hel

Anvar Mahammad

luvs2run

anvar said:

hi people my brother has
hi people my brother has oglidendrioglioma 3rd grade, he is actually treated in germany
he is just 19, and i don't want to lose him because i love him too much. i am ready to do everything for him, can u please give me information, about treatments avilable and treatment are being prepared?
i would really appreciate if you hel

Anvar Mahammad

hi people my brother has
Anvar, I'm sorry to hear about your brother's diagnosis. I was diagnosed with the same thing in June. My neuro-oncologist told me that if you have to get brain cancer, this is the best one to get. This is a slow growing tumor, and depending on the genetic profile of the tumor, can be very responsive to chemotherapy. You brother should make sure that they do genetic testing to determine if the 1p & 19q genes are deleted. If so that is very good news and the tumor will respond to chemo. Typically they will try to remove as much of the tumor as possible (if they can get a total resection that is also very good news). Since there are always so cells remaining, most doctors will recommend either radiation, chemo or both for a grade 3. I had a total resection and was lucky to have the deletions so my doctor only recommended chemo, which has been very tolerable. My doctor told me that although it is likely that the tumor will return some day, that I should expect a very long life and that if the tumor returns we'll treat it and "reset the clock again". My advice is to ask lots of questions of the doctors, don't be afraid to get a second opinion and to encourage your brother to keep a positive outlook. I wish you and your brother a very long and happy life.

Dave

dixieangelbaby7

PBJ Austin said:

Don't give up!!
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.

brain cancer very rare very agressive
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..

dixieangelbaby7

bkallaus said:

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

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

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

What can I expect with the radiation and chemo?

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

Bethany

aggessive brain cancer very rare
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

dixieangelbaby7

cindysuetoyou said:

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

i feel your pain
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

dixieangelbaby7 said:

i feel your pain
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

Hi, Natoshia.
Thank you for
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

sadinholland

luvs2run said:

hi people my brother has
Anvar, I'm sorry to hear about your brother's diagnosis. I was diagnosed with the same thing in June. My neuro-oncologist told me that if you have to get brain cancer, this is the best one to get. This is a slow growing tumor, and depending on the genetic profile of the tumor, can be very responsive to chemotherapy. You brother should make sure that they do genetic testing to determine if the 1p & 19q genes are deleted. If so that is very good news and the tumor will respond to chemo. Typically they will try to remove as much of the tumor as possible (if they can get a total resection that is also very good news). Since there are always so cells remaining, most doctors will recommend either radiation, chemo or both for a grade 3. I had a total resection and was lucky to have the deletions so my doctor only recommended chemo, which has been very tolerable. My doctor told me that although it is likely that the tumor will return some day, that I should expect a very long life and that if the tumor returns we'll treat it and "reset the clock again". My advice is to ask lots of questions of the doctors, don't be afraid to get a second opinion and to encourage your brother to keep a positive outlook. I wish you and your brother a very long and happy life.

Dave

Wanted to bring some good
Wanted to bring some good news and hope to this topic. My husband had his MRI after being on chemo for 1 year. 21day cycle for 6 months and 5day cycle for 4. There is no sign of a reoccurance! Praise God! Like Cindy's son David, my husband as very little side effects. Just a small bit of short term memory loss. Keep the faith. I think having a positive attitude, as my husband has had the whole time, is what keeps him doing so well, and God of course!

anvar

luvs2run said:

hi people my brother has
Anvar, I'm sorry to hear about your brother's diagnosis. I was diagnosed with the same thing in June. My neuro-oncologist told me that if you have to get brain cancer, this is the best one to get. This is a slow growing tumor, and depending on the genetic profile of the tumor, can be very responsive to chemotherapy. You brother should make sure that they do genetic testing to determine if the 1p & 19q genes are deleted. If so that is very good news and the tumor will respond to chemo. Typically they will try to remove as much of the tumor as possible (if they can get a total resection that is also very good news). Since there are always so cells remaining, most doctors will recommend either radiation, chemo or both for a grade 3. I had a total resection and was lucky to have the deletions so my doctor only recommended chemo, which has been very tolerable. My doctor told me that although it is likely that the tumor will return some day, that I should expect a very long life and that if the tumor returns we'll treat it and "reset the clock again". My advice is to ask lots of questions of the doctors, don't be afraid to get a second opinion and to encourage your brother to keep a positive outlook. I wish you and your brother a very long and happy life.

Dave

thank you very much Dave you
thank you very much Dave you can not imagine how much thankful
you really encouraged me, i wish happy long healthy life for you
God bless you, and i wish that it never appears again

Anvar

rangel

just the girlfriend
hi everyone
i just have a few questions my boyfriend was diagnosed aug 2005 back than we had not meet yet we just meet in august 2010 started dateing this pass june 2011...i have known about his cancer AA grade 3 since we meet...he is by far the most amazing man i could go on forever bout him but my question(s) is how long can one live i have read the 2-3 yrs some 5 ...he did chemo and radiation when 1st diagnosed but no surgery as the he has 2 tumors one the drs will not be able to get the other only a 30% chance he would make it some he decided no to do it.....he lives on meds..has good days bad days days he doesnt move cause the pain is so bad but also amazing days i know i am blessed he has made it to 6 years but im wondering how long some of you or your family members have he is just 40 im 32 and i always joke we have to make to 60 and 52 but i think i know that is not a real plan.....we enjoy each day we are giving and make memories with my boys and i make sure i am always taking pics...any advice i would love thanks

ravibalgi

We are companions
Hi Cindy,
My Aunt(44) too has been diagnosed with anaplastic oligodendroglioma. After her operation, she was put on a RT+ PCV which happens to be a very good post operation treatment for such rare form of cancer. Here is a Cochraine link, which also verifies the same.
http://onlineclibrary.wiley.com/doi/10.1002/14651858.CD007104/pdf

The reports for FISH evaluation for 1p19q co-deletion are yet to come and we are waiting for it. She did not show any signs of loss of fine and gross motor skills, memory. She is weak due to the huge medical procedures that she had to grow through. We are hopeful. So should you be.
We are companions. Thank you for sharing

cindysuetoyou

ravibalgi said:

We are companions
Hi Cindy,
My Aunt(44) too has been diagnosed with anaplastic oligodendroglioma. After her operation, she was put on a RT+ PCV which happens to be a very good post operation treatment for such rare form of cancer. Here is a Cochraine link, which also verifies the same.
http://onlineclibrary.wiley.com/doi/10.1002/14651858.CD007104/pdf

The reports for FISH evaluation for 1p19q co-deletion are yet to come and we are waiting for it. She did not show any signs of loss of fine and gross motor skills, memory. She is weak due to the huge medical procedures that she had to grow through. We are hopeful. So should you be.
We are companions. Thank you for sharing

Hi, Ravibalgi
Hi, Ravibalgi.

I'm sorry that we are linked by such a bad situation, but I appreciate your greeting.

We too are hopeful but it's been a rough few months for us. After being cancer free for over two years, David's tumor reappeared and has grown rapidly. You can see some of what we have been through under the thread entitled "our ordeal...sorry it's so long." It is a long post, but a lot has been happening in a short amount of time.

I've heard of PVC...David hasn't taken it yet. He started out on Temodar (after surgery and during radiation, then two years after radiation) and he just now started carboplatin and toposide and melathon. He's only had one treatment and we are waiting to see how David will respond. He has an MRI on 11/28.

I'll be praying that your aunt's FISH evaluation is favorable. Thank you again for your note.

Love and blessings,
Cindy
PS I posted pictures in the "expressions" area on my csn space if you'd like to put faces to our names.

oilgodendroglioma83

bkallaus said:

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

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

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

What can I expect with the radiation and chemo?

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

Bethany

I have oilgodendroglioma grade 2
I had surgery on feb 14 this year and I have not felt the sme sinces this is very scary

oilgodendroglioma83

cindysuetoyou said:

Hi, Natoshia.
Thank you for
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

Hi Im Steven I just had brain surgery to remove oilgodendrogliom
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

Devman

cindysuetoyou said:

Hi, Natoshia.
Thank you for
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

Gamma Knief
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

oilgodendroglioma83 said:

Hi Im Steven I just had brain surgery to remove oilgodendrogliom
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

Hello
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

cindysuetoyou

Devman said:

Gamma Knief
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!!

Thank you
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

ravibalgi

penzo said:

oligodendroglioma
I have a brother who was diagnosed with an oligodendroglioma at the age of 45 - he was completely asymptomatic until he had a seizure when out one evening having dinner. They operated and removed the tumor - he underwent Radiation for 7 months. The last six years he has been absolutely fine taking only epilepsy medication. Last week he went for his annual check up and they found a new tumor - he had the surgery this morning and the Surgeon said it was very agressive grade 4 - can any one cast some light on prognosis with this second tumor?

1p19q molecular co-deletion
hi penzo,

i am so sorry to hear about tumor recurrence. how have the tumor blocks responded to 1p19q co-deletion tests. they tell about how sensitive will one be to the chemo as also the prognosis of AO(Grade 3) AOA(Grade 4) tumors.
here is one article that you may find with little information. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD007104/pdf

i pray and wish for your brother's recover and pray that he is able to get well and strong