Doc will never say remission with brain tumor

I had a craniotomy of the right frontal lobe December 2010. I had/have ologliodenroglioma stage 3, with p and q chromosome deletions. I currently take temodar monthly. My 3 month MRI was "stable" This is good news, as it means no growth noted. My Doc says we will do treatment 6 months to a year as protocol, then MRIs to monitor. He said recurrence can be common 5-7 years out. I have seen some blogs of 10+ year survivors. I would like advice on how to maintain stability and positive.

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You may want to consider taking supplements especially Poly MVA which I have found hugely helpful for my tumor. I hope that you are still doing well and that your tumor has not become active again. Another thing you might consider is LDN (low dose naltrexone) you can order this from my doctor - this is a certified 4.5 mg dosage which is very difficult to find as it comes from the manufacturer in 50 mg tablets and a compounding pharmacy has to make up the lower dosage capsules. Anyhow if you want any more info please send me a message and I am happy to pass along what I can from my experience of success.

- blondellie

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My husband (at age 33) was diagnosed with an oligodendroglioma (grade II, with p and q deletions) in his left temporal lobe (spreading into other areas) in Feb 2003. He had emergency surgery to relieve swelling after his biopsy and they took some of the tumor then. After that he did 6 weeks of radiation and 18 months of chemo (Temodar). He has been tumor free ever since. He has managed to keep a full-time job that requires lots of written and verbal communication (his greatest weaknesses post-tumor and treatment!). Because of his problems with naming and memory seem to get worse over time, we sometimes think he has a recurrence but we have yet to see anything on an MRI. 8 years and counting and hoping for many, many more. Good luck to you!

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My father was diagnosed with a glioblastoma brain tumor stage 4 in Jan 09. He also had emergency surgery in which they removed pretty much the whole left temporal lobe. He has been on Temodar (since the beginning) as well as Avastin (past year & a half). His MRI'd have been clear of any growth & any signs at all of a tumor. His Dr actually did say he was in remission about 6 months ago after his 5th MRI showed nothing but empty space, this is the same Dr that removed the tumor & only gave him 6 months to live that same day. He has been nothing but positive the entire 2 1/2 yrs & I promise you that is the most important thing when it comes to this horrific diagnosis. Believe that there are miracles because there simply is no other explanation in my eyes with my dad. Best of luck to you!!

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My 23 year old was diagnosed with Astrocytoma grade 2 in the frontal lobe in March 2010. In April 2010 he had his first resection to remove 80% of the tumor, the doctors felt the tumor was benign and started no treatment....they were so wrong. Within 6 weeks, the tumor had grown back and July of 2010 he had his second resection.

Radiation and chemo were started as soon as possible. October will be one year that he started his Temodar regimen. the onocologist has been quite up front about what 'could' happen....it could grow back quickly, it could be 6 months, 2 years, etc. but that it would grow back.

How does one deal with that? Seriously, its like waiting for a time bomb to explode. My son can no longer work or drive due to the seizure disorder as a result of the tumor and subsequent surgeries---during this time he was also diagnosed with Huntingtons Disease, a genetic brain disorder which afflicts his dad and several other family members.

My son is having a difficult understanding all this too. How some can go back to work, drive, live normal lives...yet his was turned so upside down.

And then I read these posts about how long people can live with brain tumors for years...then I begin to think, 'am I overreacting, am I making this more than it should be?' Should he have his disability overturned and go back to work even though his neurologist says 'no'? I can't see him living like this for years and years...hes bored, anxious all the time, ....I could rant on and on and now my stomach hurts, my heart is beating too fast (panic attack for sure).

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I had a resection in Feb of 2010 for a oligodendroglioma 2, I have the deletions also. Rt. frontal and temporal lobe. I am taking levetiracrtam 2000 2X and 100mg lamictal for seizures, I've had 3 since November. MRI's every 3 months, so far so good. There will be good and bad days, I've had a few pity parties for myself, but family and friends keep me positive. I'll have to ask my Dr. in September about the tumor returning, lets hope not. Think happy thoughts.

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