Do you know anyone with GBMF survive for 10 years?

i was diagnosed with GBMF of my Corpus Callosum on 18/12/2009. I as working up to 17/12/2009. I presented to my optician with double vision for 2 days.Due to my activity level, my neurosurgeon refused to touch it. I had all the treatment available in UK. I started radical radiotherapy and Temozolomide on 18/1/2010. At the end of this treatment, MRI showed progressive disease but I felt no different. I was not working or driving but I walking, talking and doing everything else. I was then commenced on PCV. I finished this on 24/2/2011. Subsequent scans have shown no enhancement. I am now on 12 monthly scans and review by phone. Apart from not working or driving, I can still do everything else. I walk my dogs. I do get very tired and have headaches daily. I don't smoke and I hardly drink any alcohol. I don't know why I am still alive when I was given a prognosis of 9 to 12 months. I am the lucky one and I do hope that others will also live longer. I have campaigned for more funding for research for cures. After a successful e-petition campaign and a debate in parliament, both the government and Cancer Research UK have over £40 million for research. This will give hope to future sufferers. Most of the people I know have died except one ( Grade 3 Astrocytoma).

  • Your message is SO encouraging.  I was diagnosed  26 months ago, and given 13 months WITH treatment. Right now I am enjoying a wonderful vacation in Mexico 

    I had the debulking,  radiation,  chemo.  Suffered a seizure at 7 month point. Am on antiseizure meds..Side effects are slight balance problems, short term memory loss, some slured speach, much weakness and fatigue. Otherwise normal. Three yearly MRI indicate no progression  ( tumor had shrunk during radiation ) Most survivors only have two or three years, so your experience is very encouraging for our family. 

    Hoping you continue with your stable situation.

    Regards, Taremay 

  • We are wondering how you adapted when realizing you would outlast your prognosis. When I became "stable", it took us quite awhile to feel comfortable in making future plans. Last September we took a long dreamed for vacation,  and then went ahead and booked our winter vacation.  The fear was always the "what if something happens while we are away". I'm still trying to find that balance between living normally and yet knowing this is hanging over us. Did you find that also?

    Regards, Taremay 

  • I was diagnosed March 2013 so 6 years for me and no health issues at all.  I went back to work May 2013 whilst on TMZ and radiotherapy.  MRI scans clear for few years but tiny signs of cancer on December 2017 so back on chemo during 2018.  However cancer spread and had debulk operation in January 2019.  I was meant to be starting radiotherapy but after MRI last week signs of cancer spreading since operation and feels radiotherapy would be major risk to eyesight as cancer in same place.  I have a meeting with consultant on Monday to discuss chemotherapy to try and control spread but running out of options for treating me now as TMZ and PCV not working.  However am still in good health and no issues other than have been on steroids prior to operation and have round face and eat like a horse so putting on weight.  Happy days!

  • When you went back on chemo in 2018, what dosage was it? My tumor has grown again after months of no activity.  The oncologist has put me on a daily pill of low dose TMZ (115 mg) 

    Regards, Taremay 

  • Sorry Taremay I did not see your question.  I do not know what it was but it was 5/28 days and think that I did 3 cycles and they stopped after the MRI showed that cancer was still growing.  Really disappointing as TMZ worked really well for me when I had it in my initial treatment.  They then put me on to PVC and had 2 cycles but again MRI showed not working.  At the moment waiting to go onto carboplatin and something else and it will be about 4 hours a day for 3 consecutive days every 4 weeks.  Waiting for this but the chemotherapy ward extremely busy so they are struggling to get me a space but only been 2 weeks so hopefully will get call soon.  Again they are just trying to stop cancer spreading and has been quite active since debulk in January.

  • Greetings Susan 68

    Have been wondering how you are doing?. Did you get into treatment and is it helping? ...... I was started on a daily dose of temezolomide in March 2019. However after 6 months the tumor had doubled.  In early October was started on intravenous chemo every two weeks. An MRI last week showed the tumor had grown slightly. ... Will see what the oncologist says at appointment next week.  We have a mexico holiday booked for mid January so hope it still goes thru. ♡♡♡♡♡