Hello, I'm new to this site, so I'll introduce myself.
49 year old male. Indiana. Diagnosed with a 3" diameter, grade III, Oligodendroglioma that has been resected (completely). IDH1 mutation, and co-deletion of 1P and 19Q chromosomes. Anoplastic characteristics.
All symtons that led me to go to the doctor have disappeared since the surgery.
I am currently in the middle of 6 weeks of whole brain radiation and temodar tablets. 2 weeks in and I have no noticed side effects. I'm planning to go back to work in a week.
I have one doctor telling me that the median survival is 15 months due to the anoplastic characteristics, while the others are saying 9 years because of the mutation and the deletion of the chromsomes.
That's a scary thought.
I just wanted to share my story.
Reply # - March 3, 2017, 08:41 PM
Hi tjarrod99.
Hi tjarrod99.
Thanks for sharing. Sending lots of hugs and hope that your treatments remain successful and long-lasting!
Reply # - March 4, 2017, 08:05 AM
Hi tjarrod99,
Hi tjarrod99,
Welcome to Grace. I'm so sorry to know you have such a dire diagnosis. It's great that you have responded so well and bodes well for future treatment successes. The thing to remember about those numbers is they come from a large number of people half of which lived longer than 9 months and the numbers are not current and don't reflect new treatment such as those targeting mutations (which I assume more closely resemble the numbers in the 9 year range. Our oncologist faculty are quick to point out that doctors are notoriously bad a predicting someones longevity. So When possible put those numbers out of your head.
Don't be too surprised if you get some pretty severe fatigue following wbr on the other hand some people don't.
On a personal note my husband was told by his surgeon that he would live 5 years and that was without anyone asking for an opinion on longevity. When pressed by my husband about a new puppy (yes it sounds like a child's question but his way of asking) his onc said unless she (me, his wife) wanted to raise it don't get it. All that was 7 1/2 years ago and he doesn't have evidence of disease. He's on the end of a long spectrum but at least half of the people on that over all survival rate number live longer and many much longer and new treatments push that number up.
I hope you do very well.
All best,
Janine