oligodendroglioma Grade 2 Long Term Question

my husband had oligodendroglioma grade 2 removed in 1998 on the right side motor stripe area  all good until recently more seizures, left leg more paralysis , had mri done march 5th shows new growth he is having surgery next friday to remove what they can. I remember when he was first diagnosed they told us life expectancy was 5 years now i see they say average is 11 well it has been almost 14 for my husband and this is his first recurrence. We were told when he had his first surgery that they got it all. Good luck to you and your wife. i will post again after surgery.

Mrs. Rathe - is your father receiving any treatment now?  What's the history?

On Apr 17, 2012 2:07 PM shariv wrote:

This IS the best type of tumor to have! I am very happy to see so many long term oligo survivors out there!

I was diagnosed w/ an oligodendroglioma (grade 2 with deletions) in August 2008. It was in the left frontal lobe and the size of a softball. Had surgery, but he only got part of it. Switched to a much better hospital after my surgery, and they watched it. I had an awake surgery in July 2009 when it started growing again. They weren't able to get all of the tumor because I had some functional brain activity in the middle of it. They got about 75% of it I think. It was upgraded to a grade 3 and after checking numerous times, they did not see any deletions. So my life expectancy dropped considerably because temodar doesn't work as well on this tumor w/out deletions. I started temodar and radiation in October 2009. Then took temodar from Jan - June of 2010. The tumor was gone, but it started growing slowly again in May 2011. My doctor told me to enjoy the summer and when I came back in September I would probably need to start a new chemo. I became a vegan in June 2011. The tumor was stable in September and December. I will be going back for another MRI in a few days. After my MRI, I will update on this post and let you know if it is still stable.

After the first surgery, I tried lots of alternative therapies (seems like all of them) and stopped eating sugar/junk food. I ate only healthy foods and I ate organic chicken/beef, fish and eggs. I juiced vegetables every day, took lots of supplements and exercised. Obviously, the tumor kept growing. So far, the only thing that has helped is going completely vegan. I do eat some animal products every once in awhile, but try to eat only raw vegetables, fruit, nuts and whole grains. It's hard to be a vegan when your family isn't!

I am very lucky because I don't have any side effects or symptoms from the tumor or treatments I had. I lost some hair from the radiation, but otherwise I had no other side effects. I wasn't even tired. I feel healthy and "normal" and that helps so much. I know God is holding me up and giving me the strength and positive attitude to get through this.

I pray for people with cancer every day and hope someone comes up with a cure soon. I would love for everyone to keep posting updates!

UPDATE: I had an MRI yesterday, and the BT is still stable! God is keeping it from growing and I also think the vegan diet is too. I would definitely try this if you have brain cancer (or any cancer).

Congrats on your stable MRI. It must be a great relief. I know when I go to my quarterly checkups there is a lot of tension until I am headed home.  Keep up your diet, your faith, and your positive attitude. I'm sure these are all helping a great deal.  Good luck and keep posting.  My next visit is 5/2.  I am oligo 2 on Temodar. No mention of surgery or radiation at this point. Will post after that.

Hello!

You are so very blessed to have come this far and there are many who have come through an oligodendroglioma stage 2 into very long (if not permanent) remission.  Having lived through this with my sweetheart, I would most definately agree with the majority that it is best to go ahead with the MRI's as scheduled just to be "in the know".  Blessings to you and your family and enjoy each day with the ones you love. 

Brenda

we found out to the tumor is a anaplastic oligodendroglioma grade 3 and always has been they never told us back in oct 1998 what the final pathology was after surgery they said it looked like a oligo grade 2. But maybe not known has been a blessing  my husband has already beat the odds  its been 13 1/2 years .... The surgery for recurrence went well on april 27th 2012 they got most of it he has alitttle more paralysis on the left side gets better each day. Going back to dr in couple weeks to talk about treatment after they get the final pathology back to see if he has deletions ( i think he must have the deletions its been 13 1/2 years already...  from what i have read  with deletions prolongs your life expectancy and with out most only live for couple years ? )

just found this site my husband was diagnosed in April with a stage 2 oligodendroglioma. He had 70% removed and just finished radio.

just found this site my husband was diagnosed in April with a stage 2 oligodendroglioma. He had 70% removed and just finished radio.

keep positive my husband was originally diagnosed in oct of 1998 and had surgery they removed it all . It came back we found out and he had surgery april 27th 2012 they couldnt get all of this time. He also had radiation the first time around but no chemo. because it had been almost 14 years they are doing radiation again and this time the chemo drug Temodar. he is doing real well with both treatments ( other than very tired)  he has 8 more radiation treatments to go. he will go for a mri to see if treatment is working in a couple weeks i will post with the results .   This time around its been harder on him he was only 35 the first time and didnt have any side affects from surgery and now 49 he came out of this surgery with partial left side paralysis also the treatment has slowed him down  and had to go on full disability.

I am so sorry to hear that your husbands tumor came back. My husband finished up his radiation two weeks ago and will have his MRI in 2 weeks. He is still having partial seizures. Radiation was hard the last two weeks. Our kids are young 8,10,12 he is having a follow up MRI in 2 weels/