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Glioblastoma grade4

Posts: 2
Joined: Jul 2017

hi, I have just been reading your stories about alternative therapies.  I AM a 58 year old female after a week of losing ability to use my r,hand and then arm, an MRI was done and on 11/28/16, an MRI showed a tumor about the size of a small orange, 1 week later it was resected with the surgeon saying. He got 99% of it.  2 weeks later, we found that it was glioblastoma grade 4.  I then had 42 treatments of radiation and am taking the termz.  For 5 days and then off for 3 weeks, with MRI every 2 months.  I will be doing that for 6 months with 2 months to go.  I am very tired now with no energy, but the last MRI showed a tiny dot of cancer.  i don't know what happens in oct. when I have completed this.  My august 2017 shows a second white spot and my doctors are doing an MRI after my next dose of chemo.  I have heard about the duke trials, and my dr.says we are getting ready for that.  I am just interested In hearing where you are on this journey.  This has been one of the worst nightmares of my life, yet the good Lord has taken extremely good care of me and I have little to no pain, just a total change of lifestyle and loss of use of my right side of which I am regaining use of.  Thanks and prayers for all who walk this road!

kunsmajs's picture
Posts: 3
Joined: Aug 2017

My GBM diagnosis came in early May 2017 after about a month of severe come and go headaches.   After multiple visits to my family doctor resulting in advice to change my eating habits and excersize more i demanded she order and MRI.   The MRI revealed two golf ball size tumors one of which was resected a couple days later and confirmed to be GBM.   The second tumor is too far back in the center of the brain for surgery.   I started a six week plan of radiation and chemo (Temodar pills) like you.   About 6 weeks after radiation I aslo started Optune treatment  https://www.optune.com/.   This treatment is in the form of a head covering that delivers electrical therapy to the brain that prevents cancer cells from splitting.   Well that is the simple explanation, the link will tell you much more.

On Wednesday of last week i had my first post operation and treatment MRI that revealed no spreading and actually a small amount of shrinkage of both tumors in my head.  In the next week or so i will restart Chemo and continue with the Optune treatment until my next MRI in three months.   While i hope and pray for the same results i know this disease and i am realistic in what to expect.   Like you, i cannot and will not complain.   Side effects have been minimal.  The one i have the hardest time with is fatigue and weakness.   My mind is definatley not as sharp as it was as i find myself searching for words and slurring my speech.   My short term memory is noticeably worse as well.

thank you for listening and best of luck to you in whatever type of treatment you have going forward.  

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