One patient with glioblastoma still alive nine years later
by kcmreddy on Sun Jan 20, 2013 04:45 PM
My father is suffering with GBM-IV in brain.Radoth erapy(30 days along with temazoloamide 100 mg tablet) completed.
Can anyone tell me the life span of GBM grade -IV
by SarahGrey on Sun Jan 20, 2013 05:10 PM
Sorry to hear... one thing i learned is everyone is different with this disease. 100 people can have GBM and each have a different experience. some live months, some live years... it's based on patient's age, overall health, location of tumor, how many tumors, size of tumors, if they can be surgically removed, how much damage the surgery did, etc... there's really too many factors to give an accurate answer. oh, also the way a patient responds to treatment will determine how they do...
wishing you the best,
by alexyj23 on Mon Jan 28, 2013 09:29 PM
My dad was diagnosed after having small seizures in April of 2012. He has GBM stage 4 in his temporal lob that is not operable. He had a rough 3-4 months following that where he didn't have enough energy to get up off his recliner. We found out late august that I am pregnant and he has become much more energetic. He forgets words sometimes, but overall his health is good. He has blood clots in his legs which cause his leg to swell, but he can walk and some days we completely forget he has this horrible disease. The doctors originally told him he would be lucky to make it into 2013...so far so good. I found out today that he has been having seizures that have become a little painful, so we are going to take him to the doctor to see if they need to increase his meds. I am hopeful he will make it to see his grandson grow up. I am 27 years old and my younger sis is 25. Let me know if I can help answer anything for you!
by kcmreddy on Tue Jan 29, 2013 03:11 PM
Thanks for reply.Can you share me the which treatment & medicins are giving to your father and treatment is going on which location.
by jstringer on Sun Feb 24, 2013 03:58 AM
You can throw the statistics out the window. My wife was dx'd with gbm iv left temporal lobe two years ago. usual protocal with craniotomy, radiation and chemo. her survival was to be six months. she has made it past the two year mark. less than 15% make it that far. every case is different. make sure there is always a positive attitude and a strong faith.
by Sonso on Sun Feb 24, 2013 08:12 PM
There is quite a standard deviation with regard to GBM IV, but it is extremely rare to go beyond 2 years (as noted). For all who have relatives, please have the heart-to-heart talks that will make ALL the difference when your loved one has thrown off the moral coil. I return here occasionally to try to hammer this message home. Put your positive thoughts into verbal (and, if possible, physical) action; don't pretend that you can battle cancer. Cancer knows nothing of your person, and is its own opportunistic life-form. Having seen several GBM IV progress, it's no fun, and the only positive is that it can force you to tell those around you what the meaning of life is (as you see it). Sorry to be less than upbeat on this post.
by flfrog on Sun Feb 24, 2013 08:13 PM
Statistics are meaningless when it comes to GBM's. The average is 6 to 18 months however I was a member of a brain tumor support group and almost everyone (over 10 people with a GBM) was well beyond those numbers. GBM's are erratic and everyone is different so you just have to gather information about the different treatments and then make the best decision you can. My father was diagnosed November of 2007 and was given 6 to 18 months and he died March of 2010. My dad did surgery to remove 90% of the tumor in his right frontal lobe and then did proton therapy radiation with temazoloamide for 30 days. We then did a week of temazoloamide a month and waited for the tumor to start growing again. He then did three seperate clinical trials which kept the tumor from growing for a little while and then once the third stopped working we stopped treatments because he was too weak to handle anything further.
From my experience after the initial radiation and temazoloamide treatment there is a period of time where they feel good and without the few mental deficits you'd never know they had the tumor. Take advantage of that time. Make memories, go places they want to go and have the tough discussions about where they want their final resting place to be and make the arrangements now when it's not necessary. Take pictures so that you will have those happy times during the journey to look back on and it will make the end a little easier, at least I think those things helped me.
I wish your family and your father the best and am so sorry. We prayed for a cure for my father and it never came but I hope one day they have one for this horrible disease.
by Sonso on Sun Feb 24, 2013 09:18 PM
by SarahGrey on Mon Feb 25, 2013 08:56 PM
And likely most-importantly, make sure you have a good team of doctors!
My husband's old neuro-oncologist gave him too much Depakote and he declined quickly. It was clearly the med but the doc said "if he's declining this quickly he should go to hospice."
An ER doc looked at my husband, said "he's overmedicated," cut the dose in half and my husband improved fairly quickly. He starts seeing a new neuro-onc this week. (this one seems to actually give a damn...)
Your neuro-oncologist is so very, very important to not only survival but quality of life. Good luck to you...
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