Grade III: Anaplastic Oligodendroglioma lifespan?

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.

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.

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

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

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

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?