Brain tumor patient

Portal Forums Member Updates Head/Neck Cancer Member Updates Brain tumor patient

This topic contains 2 replies, has 3 voices, and was last updated by catdander forum moderator catdander forum moderator 1 year, 5 months ago.

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March 3, 2017 at 1:21 pm  #1290260    


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.

March 3, 2017 at 8:41 pm  #1290261    


Hi tjarrod99.

Thanks for sharing. Sending lots of hugs and hope that your treatments remain successful and long-lasting!

Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV-2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective -growth & new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – PF-7020- large reduction of tumor and mets. 11/16-mixed results, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off Pfizer trial, 9/17 Gemzar- reduction then stable. 8/18 – Mixed results – new treatment?

March 4, 2017 at 8:05 am  #1290264    
catdander forum moderator
catdander forum moderator

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,

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