What's your Oligodendroglioma story?

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RE: What's your Oligodendroglioma story?

by MrBrightside on Mon Nov 02, 2015 05:45 PM

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I have posted fairly regularly to this thread.  First diagnosed 5 years ago at age 40 and had surgery to remove Oligo grade 2 from left frontal lobe.  At 3 years since surgery started to return and did chemo (Temodar) for 11 or so months last year finishing in December of 2014.  The chemo appeared to at least stabilize it after finishing the treatment.  This past July I started to not feel well and suffered a double grand mal seizure putting me in the hospital for a couple days.  MRI did not show any substantial change which would have caused it.  Follow up MRI was scheduled for November but I was still having a lot of trouble concentrating and generally did not feel well in my head two months after my seizure.  Pushed my November appointment up to mid October and this time the MRI showed tumor is now active again and on the verge of crossing over into other side of the brain.  I will now be having surgery again at some point this month and likely radiation immediately following (depending on pathology tests following surgery). 

Although still very positive overall, this was the first time since my original diagnosis that things were discussed that were a little scarier.  Such as the possibility of it spreading into other areas and the potential for it to some day turn malignant.  After my initial surgery I was told that they had 'gotten it all' and other than routine MRI's as follow ups I was given the impression that I should be pretty good to go.  The longer I am on this journey the more I understand that this will likely be a cycle that will repeat itself until the available treatment options are no longer enough to help me or new treatments/tactics are discovered.

For now, I'm really grateful for the treatment I am getting and that I have treatment options at all. 

Good luck to everyone out there with whatever you are facing.

RE: What's your Oligodendroglioma story?

by shariv on Fri Nov 06, 2015 06:31 PM

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I found out in 2008 that I had an oligo II. I've had 2 surgeries, I did chemo/radiation after the 2nd surgery in 2009. Finished chemo in June 2010. The tumor started growing again in May 2011. I went on a hard core, whole food, plant based diet and juiced vegetables etc. Instead of starting a new chemo at my next MRI appt in Aug 2011, the tumor was stable. My last MRI was 10/26/2015 and it is still stable. Nothing has changed since Aug 2011! I thank God (and His food) for this.

There is so much information out there for you to read/watch. I love the movie Forks Over Knives. Joel Fuhrman has some good books (Eat to Live; Super Immunity etc).Chrisbeatcancer.comhas a lot of videos with people who have healed their cancer naturally without chemo and radiation. Chris "overdosed" on raw vegetable salads and juice and got rid of his cancer.

Take care! Praying for all of you!

RE: What's your Oligodendroglioma story?

by jefuchs on Mon Feb 22, 2016 10:32 PM

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This discussion is five years old now, and I haven't updated our story in quite a while.

My wife has had three recurrences as of now.  She also had a partial resection earlier this month.  The pathology report has confirmed that her diagnosis is now a grade 3 oligo.

Last year she completed 11 months of temodar (cut short due to toxicity), and had an immediate recurrence.  She was sent for six weeks of radiation.  The very first MRI after radiation showed a new hot spot.  Believed to be radiation necrosis at first, it was re-scanned at intervals until it was clearly identified as new growth.  This was especially troubling, since the radiation oncologist has been the only doctor who has told us that his treatment would almost certainly stop the tumor for at least a while.

So now she's nearly three weeks post op.  She's doing amazingly well, and you'd never guess she'd had any surgery at all.  It could not have gone any smoother.  Just as before the surgery, she has no symptoms, and very good functioning.

BUT, she's a higher grade oligo patient now, and her treatment options are limited because of toxicity.

In a few weeks we'll return to MD Anderson and discuss treatment options.  We're hoping there's a clinical trial that will do some good.  Tissue from the resection is being DNA tested for possible targeted therapies. 

Hoping all is going well for the rest of you.  

Jeff

RE: What's your Oligodendroglioma story?

by gregoryfarns on Tue Feb 23, 2016 12:18 AM

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Thanks for the update. Sorry about the recurrences, but Im glad she's doing well. Good luck in Houston!

RE: What's your Oligodendroglioma story?

by Amyreda on Tue May 10, 2016 06:19 AM

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Hi, I'm new to this board and this type of posting in general. Am I even posting in the right area?! My husband Tim (32 yr old) was diagnosed with an Oligodendroglioma Grade 2 about a month ago, after having a biopsy on March 28. Focal seizures (left hand and then left arm and face going numb) led us to getting an MRI scan and then a biopsy. We have gotten several opinions on what we should do for treatment and we are still not feeling certain of the "right plan". The biopsy surgeon told us to not do surgery because tumor is very close to motor strip and could leave tim paralyzed in left arm or face. He is a professional surfer and surf teacher; and I think that was taken into account. Another surgeon said they can do the surgery but there is a small risk. Tim is thinking he will put off surgery for now. With or without surgery, every doctor we have spoken to has said to do radiation and chemotherapy (one oncologist suggested Temodar). Though this seems somewhat logical, we are also very scared and confused. Why are we treating a BENIGN tumor with chemo and radiation? Are there some people that don't really "treat" (surgery/chemo/radiation) Oligodendroglioma grade 2s, and they wait and watch it?? What is the chance it will turn into a grade 3? What is the chance it won't grow or turn into cancer at all?? My husband is afraid that the chemo and radiation might cause the tumor to grow back as a higher grade cancer or the chemo might lead him to develop a different cancer like leukemia. Has anyone else shared these fears and concerns??? How did you make such huge decisions when deciding on your treatment plan? We don't know what to do, and anyone's advice who has gone through this experience would be SO appreciated! Thank you so much!

RE: What's your Oligodendroglioma story?

by cazwinn on Tue May 10, 2016 09:42 AM

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HI there Im Wini and have been diagnosed with a grade 2 oligodendroglioma.  I had it surgically removed in Sep 2014 but they couldn't get it all.  Last year I was told because I had the right deletions I should have radiation but I chose to go down the natural path.  I am seeing a naturopath and she is helping me with supplements and diet.  This is not for everyone and I am having the occasional seizure however I will be seeing my naturopath tomorrow who will put me on a much stronger dose of Kava which I am taking along with other things.  My suggestion if your wanting to do it naturally is to find a naturopath and change your diet...I try not to have any processed sugar, don't eat any bread unless its gluten free, make juices, eat organic porridge with blueberries, cyclops yoghurt, organic chicken 2 x week, eggs organic, lots of cruciforous veges, salads, all very good for you.  Watch chris beats cancer look at his site too n goodluck with everything guys

RE: What's your Oligodendroglioma story?

by MrBrightside on Tue May 10, 2016 12:37 PM

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Amyreda-

Sorry about your husband's diagnosis.  I have an Oligo which was originally a grade 2 in 2010 but is now a grade 3 in 2016.  I've had surgery twice, Temodar, and just finished proton radiation.  You should be able to read my whole story if you click on my username under 'about me' or something like that.

I would suggest getting a second opinion on the surgery but it sounds like you already did.  If they aren't from a hospital that specializes in brain surgery then I would consider getting a third somewhere that does considering the location of the tumor.  It's taken me all these years since first diagnosed to understand things better.  Oligo's are generally slow growing compared to other brain tumors but they are serious because they are in your brain.  Every patient is different which is why treatments vary so much.  Sometimes it is safe to just monitor it for a bit for rate of growth and sometimes you need to just get it out asap.

One thing to keep in mind is even with surgery/chemo/radiation it will likely come back.  After my original diagnosis and surgery, my surgeon told me it 'could' come back but I took it as it was more likely not to.  Well unfortunately it only took about 4 years before it did.

Regarding how to choose a course of treatment...it's not easy but you really need to trust your doctor(s).  If you don't trust them then I would find another.  You will read a lot of opinions regarding treatment or not doing treatment.  I would say by far the majority of patients opt for suggested treatment.  Some go a natural route.  I myself have even been cutting out foods with added sugar over the last few months.  It's bad for you whether or not it contributes to your tumor.  While I'm in very good shape, I love my desserts so this has not been easy!  But I've done it.  Most would suggest combining both is the smartest route.  Latest Oligo data - which is not extensive - shows that chemo and radiation does extend lives. 

Feel free to message me with any other questions. 

RE: What's your Oligodendroglioma story?

by handetushar on Tue May 10, 2016 01:12 PM

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Amyreda,

My dad had GBM a stage 4 cancer and lived for 20 months. He had a good surgical resection and radiation and temodar(6 months). He had a very good quality of life except for the last 6 months. Oligodendroglioma is indeed a cancer ( the one of lowest grade) Grade 1 is a benign tumor whereas anything upwards is a cancer. Do not get scared by the word cancer. Its just another disease, which is a result of imbalance between the body mind and soul. Work with your husband

1) To know what happened in the past that made him probably get a glioma...Homeopathy says right side tumors are due to financial worries or business or work tensions. Try to arrest those causes.

2) Prognosis generally is 10-20 years or even more for Oligodendroglioma so you have lot of time to fight it,while it is true Oligo MAY return as stage 3, trust me if you arrest the route cause he goes into a guaranteed remission.

3) There are lot of naturopaths and naturopathy or non conventional clinics in Mexico and trust me they work good,I saw people beating death when I took my dad there.

4) Temodar is a very safe drug just that the right proportion has to be given...again once temodar is discontinued you WILL NOT be able to use it again as the tumor cells develop resistance to TEMODAR and it is infact a risk to give it again...

5) No gluten,no alocohol,no red meat, go organic and no processed sugar 

6) Ketogenic diet is one option that works marvellous for brain tumors but your husband needs to accept it, when I say it works I have seen it work. Ketogenic diet+HBOT is a great protocol that unfortunately the conventional multi dollar industry will never accept.

7) Radiation may be ok but it has its underlying risks of necrosis that might impact the brain functions.

8) Get a recommendation from UC DAVIS or DUKE on surgery options, I read story of a female who was told tumor can not be operated but a great surgeon did it for her clean...Surgery as per me is a necessary option to give up only if 100% sure that it will cause him paralysis. At least some amount of tumor reduction will shunt off the brain pressure.Rememb er if ever after this surgery you get another chance to do a surgery do not give it up, do it. I did not let my dad go through another surgery when it was possible and I will live with that guilt forever.

Last but not the least, its just a bloody disease that a young sporty person like him can really take care of, be positive and keep a very very positive spirit do not be affected by the fact that cancer is terminal, several people have proved it wrong....

My wishes and if you wanna reach out to me feel free. We did a lot of different things for my dad and I can share more dos and donts.

He can beat cancer if he decides.

tushar.hande @gmail.com

RE: What's your Oligodendroglioma story?

by Amyreda on Fri May 13, 2016 06:33 PM

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On May 10, 2016 12:37 PM MrBrightside wrote:

Amyreda-

Sorry about your husband's diagnosis.  I have an Oligo which was originally a grade 2 in 2010 but is now a grade 3 in 2016.  I've had surgery twice, Temodar, and just finished proton radiation.  You should be able to read my whole story if you click on my username under 'about me' or something like that.

I would suggest getting a second opinion on the surgery but it sounds like you already did.  If they aren't from a hospital that specializes in brain surgery then I would consider getting a third somewhere that does considering the location of the tumor.  It's taken me all these years since first diagnosed to understand things better.  Oligo's are generally slow growing compared to other brain tumors but they are serious because they are in your brain.  Every patient is different which is why treatments vary so much.  Sometimes it is safe to just monitor it for a bit for rate of growth and sometimes you need to just get it out asap.

One thing to keep in mind is even with surgery/chemo/radiation it will likely come back.  After my original diagnosis and surgery, my surgeon told me it 'could' come back but I took it as it was more likely not to.  Well unfortunately it only took about 4 years before it did.

Regarding how to choose a course of treatment...it's not easy but you really need to trust your doctor(s).  If you don't trust them then I would find another.  You will read a lot of opinions regarding treatment or not doing treatment.  I would say by far the majority of patients opt for suggested treatment.  Some go a natural route.  I myself have even been cutting out foods with added sugar over the last few months.  It's bad for you whether or not it contributes to your tumor.  While I'm in very good shape, I love my desserts so this has not been easy!  But I've done it.  Most would suggest combining both is the smartest route.  Latest Oligo data - which is not extensive - shows that chemo and radiation does extend lives. 

Feel free to message me with any other questions. 

Thank you so much for your reply! I'm sorry if you already wrote this somewhere else...( I'm new to this board and I'm figuring out how to do everything still )... How are you doing now? What is your treatment now that it came back as a grade 3? When did you start this treatment? ...my husbands radiation start date and chemo start date is may 18&19. He keeps wondering why he is doing chemo when he technically doesn't have cancer (he has a grade 2). I remind him with things like what you wrote...that studies show that chemo/radiation with grade 2 extends lives. It's all overwhelming at first I suppose but things are starting to become a bit more clear. Anyway, I would love to know how you're doing and what treatment you are doing now! Hope all is going well! Thank you! -Amy

RE: What's your Oligodendroglioma story?

by Amyreda on Fri May 13, 2016 06:51 PM

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On Nov 06, 2015 6:31 PM shariv wrote:

I found out in 2008 that I had an oligo II. I've had 2 surgeries, I did chemo/radiation after the 2nd surgery in 2009. Finished chemo in June 2010. The tumor started growing again in May 2011. I went on a hard core, whole food, plant based diet and juiced vegetables etc. Instead of starting a new chemo at my next MRI appt in Aug 2011, the tumor was stable. My last MRI was 10/26/2015 and it is still stable. Nothing has changed since Aug 2011! I thank God (and His food) for this.

There is so much information out there for you to read/watch. I love the movie Forks Over Knives. Joel Fuhrman has some good books (Eat to Live; Super Immunity etc).Chrisbeatcancer.comhas a lot of videos with people who have healed their cancer naturally without chemo and radiation. Chris "overdosed" on raw vegetable salads and juice and got rid of his cancer.

Take care! Praying for all of you!

Hi! I came across your story after searching for answers. My husband was recently diagnosed with Oligodendroglioma (double deletion) grade 2. Doctors are recommending chemo (Temodar) and radiation. One surgeon said absolutely don't do surgery because tumor is right next to motor strip. And another surgeon at cedars Sinai said they can do surgery but there may be some risks, but he could also hold off on surgery. No one is really pushing the surgery. Chemo and radiation are the recommended protocol. As is the Keto Diet ....have you heard of it?? Anyway, my husband is still uncertain as to what to do. Chemo is scary but then again, so is not taking a medicine that has shown to prolong lives. This is so overwhelming. We have faith in God and we pray. I see you do to. My husband the other day though that God probably doesn't want him to do chemo. Anyway, I'm writing to see how you are doing?! Have you had an MRI since your last one in October? Hope you're doing great! Please let me know! Thank you so much!! -Amy
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