Do these ogliodendrogliomas ever just go away?

Hi Folks! As always, this site and you people have been an invaluable source of information, so I thought I would ask this of you all.

Im back on the Temodar, thanks to the drug companys program.  However, yet another MRI shows that the inoperable portion of my ogliodendroglioma looks exactly as it did on the first MRI that I had some I think 6 months after my surgery and chemo/radiation.

If the darned thing is dead, wouldnt the body just resorb it? Have any of you had a tumor just up and go a way?

After two years I feel very lucky to have survived this long but still wonder if Im walking around with a time bomb.

Thanks in advance

Hello Sue  I had a grade 2 Oglio removed in 2005 ( gross total ressection... ) no radiation or no chemo ? and I am still having MRI's every 3 months ?  well my last MRI the tumor board at UC Davis in Sac, Ca said they was something there and now they want me to have an MRS ?  what the heck is that  I cannot find anything on the internet about the machine  ? is it sim to an MRI .

 So I asked my Dr. the what if ?   and he said if it did come back he would put me on Temodar.....any help you can give me would be much appreciated  I feel like I did

I have an oligo grade 2 and have for 3 years and no change.  This tumor is supposedly so slow growing that I'm not doing anything except the frequent MRI's. I did have one month of Temodar in April and ended up in the hospital with 4,000 platelet count so that ended that.  I go to to a neuro oncologist.  Mine is not operable due to the location.  My neuro surgeon said at the beginning that if there was no change after 5 years that I would only have an MRI every 5 years.  I dunno, my guess is they aren't sure what these things will do so being cautious is the way to go.  I never heard of an MRS. 

Hi Suzy, an MRS is a better version of an MRI, it is a magnetic resonance spectroscopy.  Supposedly they show new tumor growth sooner than and MRI does.  If they suspect new growth you better get on your Drs case and tell him you want him to get doing something NOW. 

Let us know what happens, and Dont waste time.

Sue

I have an oligodendro grade 3 and it started as a grade two and progressed over a period of seventeen years. I first had radiation and it laid like a sleeping dog for nine years and then awakened to become a higher grade. We now know that I should have had chemo first and saved my radiation option however I did pretty well in spite of it. In the beginning I had an MRI every three months for two years and then every six months. This tumor must be monitored closely in ordered to see if there is a change. In the last five years I have had two brain surgeries and three different chemo therapies one of which is Temador that I am on now. It is important that you are followed very carefully and timely. If I had a doctor like yours I wouldn't be here typing this. I'm sorry if you think I'm to blunt. My tumor is in the left occiptal parietal lobe. It's like real estate - location-location-location however I was told by  neuro surgeons back ten years ago that it was inoperable. I'm living proof they were wrong. My advice to you is run, run,run and find a comptent doctor...                                      

This is a very interesting thread for me. I had surgery 3 years ago today to partially resect my oligo II, followed by 21 months of Temodar. MRI's have remained stable, tho over the past few months I have started to have some symptoms. Seizures have never been completely under control, but they are simple partial to simple complex, do I deal with that. I am on Keppra and Tompomax at this time...after many combinations. I am in a rural area and feel my treatment has been good, as my surgery was performed at a larger University Hospital. And my Drs. have conferred with one of the larger brain tumor centers during treatment. Now that the MRI is not show anything, and the symptoms are increasing, and the neurosurgeon that did my surgery says that the probability is that the tumor is active and we just can't see it yet, my oncologist is ready to sent me to a major center for a complete workup. He ordered a PET scan for me, but my insurance company denied it. My tumor is on my right temporal lobe.

Thanks for listening,

Kathy

On Nov 11, 2009 1:07 AM kathye wrote:

This is a very interesting thread for me. I had surgery 3 years ago today to partially resect my oligo II, followed by 21 months of Temodar. MRI's have remained stable, tho over the past few months I have started to have some symptoms. Seizures have never been completely under control, but they are simple partial to simple complex, do I deal with that. I am on Keppra and Tompomax at this time...after many combinations. I am in a rural area and feel my treatment has been good, as my surgery was performed at a larger University Hospital. And my Drs. have conferred with one of the larger brain tumor centers during treatment. Now that the MRI is not show anything, and the symptoms are increasing, and the neurosurgeon that did my surgery says that the probability is that the tumor is active and we just can't see it yet, my oncologist is ready to sent me to a major center for a complete workup. He ordered a PET scan for me, but my insurance company denied it. My tumor is on my right temporal lobe.

Thanks for listening,

Kathy

Hi Kathy, congratulation on your third anniversary. Sounds like you've had good treatment espically if you went to a university and more than one doctor agreed on treatment. Seizure activity is sometimes hard to figure out and it doesn't mean if you have more seizure activity the tumor is growing sometimes that is the case but not always.

Sorry about the denial on your pet scan. My first one was denied two years ago but they paid for my more recent ones.I have BC/BS.    

I wil alwaylisten,

Stephanie

p.s. since my surgeries my spelling is a lttle off.

Hi Sue, start to look at your self as a survivor not a time bomb. if you don't mind my asking, what grade and where is it located? Did you know oligos do better with treatment than some others? It is my understaning that cancer cells are mutations from other cancer cells. If the cancer cells are dead than it wouldn't matter what happened to them.  Be in touch~

I was recently diagnosed with an oglio, last October it showed up on an MRI.  I am in the MRI every 3-4 month mode.  Mine is located in the parietal lobe it was found by chance on a rule out MRI for headaches.  What were your symptoms?  Mine can't be operated on so it would be biopsy chemo/ radiation.  Never talked to anyone who has one too.  Are you taking any meds?

Anything you would want to share:)

Where would you look for one of those doctors?

Is there anything you wish you would have done treatment wise looking back?

Mine is in the parietal lobe and they say just watch it and see if it grows.