Questions/discussion for brainman or any others with GBM

danielh · New User Joined: 17 Oct 2007 Posts: 1

Hey,

My name is Daniel. I'm 22 years old, and was diagnosed with a GBM this summer. I had a clean resection, did 6 weeks of concurrent chemo/radiation, and now I have a clean MRI 3 months out of surgery. I've done a consultation at Duke University. I'm very positive, and not worried, because God is working in my life. I'm trying to track down different people who have had GBMs removed, and been fine, but had reoccurrences years later. I saw that yours was removed in 92, but now, 15 years later, it came back? If that is incorrect, I apologize, I just thought I read that.

Would you mind telling me a little bit about your lifestyle (as accurately and honestly as possible), specifically diet, exercise, what type of water you drink, etc?

Also, what treatment did you originally do and what kind of treatments have you seen the best results in for others with GBMs? Did they just stick with 6 weeks of chemo/radiation, did they do another year of a mix of chemos? Any survivor stories with anything you think is noteworthy would be helpful.

Have you had any problems after 15 years with the chemo you did? Or any side effects from the radiation?

Any information in these areas would be extremely helpful. Thanks so much.

God bless, Daniel

brainman

Only one detail is not correct. In 1992 I did not have a total resection of the tumor because it was on the motor strip and my neurosurgeon was afraid that I might loss the use of my right side. At that time it was not a GBM but a lower grade glioma. As I often say, a glioma is a glioma is a glioma. What really matter is the Grade and location. In 92 mine was a grade II.

It did recur in June of 2005 and I did have a total resection at that time after a biopsy showed that it was then a grade III. Before the surgery, I had one cycle of the same chemotherapy that had worked so well for me in 1992. I have the gene deletion that makes chemotherapy more likely to work on me.

I do have losses. My right arm and hand do not have the same strength or dexterity. I stutter a lot more. And I am a fall danger. I have also had some significant periods of memory loss. Since 1992, I have had to take anti-seizure medications.

As far is lifestyle goes, well Embarassed

I am better at telling other what to do than doing it myself. I do walk daily and take vitamins to try to remain healthy. But it is hard to live alone and maintain a health diet. I drink more caffeine, at more ice cream, and eat more cheese (pizzas) than I should. But I do use more turkey, chicken, or fish than before. I also drink at least 32 oz of water every day. My cholesterol and lipids are way too high.

You can read most of my story by clicking on the link below.

I guess my advice to you is: "Do as I say, not as I do" Laughing

I am very sorry about you diagnosis. You are way too young to have to deal with a GBM. Where is it located? How is it affecting you? Daniel, you are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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