GBM Survival

Hi All,

Am Vasanth from India. I was operated for Glioblastoma Multiforme when i was 19 years old(Jan 2006). Now its nearly 7 years and am doing good without any recurrence. My tumor was on the Left Occipital Lobe of the brain. Due to this, i got double vision as my major symptom. Surgery, Radioation and chemo has been done and i was give 5 years as wait and watch. 

Took my final MRI last year March and it came out well. My NO said that i dont have to take any tablets and no need of any medical check ups. I was shocked. GBM is a beast which will come for sure. But i didnt get recurrence for 7 years. Doctor said that am a miracle.

Till now i cant believe that am completely ok. Am having recurrence fear most of the time. May be am too young for this but then 7 years is a big thing.

How can i get rid of all these confusions?

Regards,

Vasanth

Hi Vasanth. I'm so glad to hear you're doing well after nearly 7 years. This does happen in rare cases and you are one of them. I'm surprised they don't still want you to have an annual MRI, though. Our doctor is treating a 16-year GBM survivor and that patient is still having an annual MRI.

Thanks for your reply. How many surgeries does the survivor undergone? If its just one, then he would have been a great inspiration for all GBM patients.

I don't know; I don't know the survivor myself-- not even sure if it's a man or a woman, just that our doctor told us this was a younger person, under 40.

I have many long term survivors at our institute.  One is at 23 years now.  I have many who are several years from diagnosis.  For all of them we recommend MRI scans once a year.  The long term survivors tend to be those who had one surgery and responded extremely well to radiation and chemo.  That's not to say that some who have had additional surgeries and therapies have not gone on to many years of symptom free survival, too.

I am glad to hear you are doing so well at 7 years. 

Lorre G.

 

Do you know of any pontine glioma survivors?

Hi Vasanth, Jan 18 will mark 20 years for me with GBMIV.  I did only 6 weeks focused radiation and one treatment of stereotactic radiosurgery in march 1993.  I had a recurrence and second surgery June 1, 1995.  I chose not to do chemo at diagnosis because there wasn't anything that crossed the brain blood barrier.  So far I haven't needed it.  I still get yearly MRIs and still get nervous every time.  I was 38 when diagnosed it was in the right temporal lobe.  i wish you continued success but I would still get frequent MRIs.  In 1995 my April 3rd mri showed no sign of recurrence. 2 months later Dr's were telling my family I probably wouldn't live through the weekend because of growth and swelling.

Hi Vasanth, goos for you. Regards, Ravi

This computer I'm using says my last log in was 12/27/2010. I am so grateful to see this thread of long term survivors. We're at the first recurrance after 2.5 years and I hate this. It's hell. But thank you for this thread.

Thanks Ravi.

U r from?