One patient with glioblastoma still alive nine years later
by elehope on Wed Jan 16, 2013 10:38 AM
Good Morning everybody,
we wake up this morning with a good news and I just want to share it with you to give some hope to all of you. My sister, 39 years old and GBM grade IV, just got the result of the first MRI after standard therapy: no recurrence is on the way right now and brain seems quite clean.
I know it doesn't mean nothing at all but still it's a light in this constant darkness. Her young age and her actitude are definitely helping a lot but I still have one question. One of the neuro-oncolgist who first has visited my sister told us that is the best moment and condition to start to think about experimental treatment...He didn't mentioned yet what is referring to and I'll keep you informed as soon as I'll have a clue about that. What do you think? Any experience about experimental therapy when there are no signs of recurrences after the first standard treatment (radio+chemo)?. In the hospital were she got her surgery (not the same of neuro-oncologist I mentioned) they suggest to continue with 4 days a month of chemo for 6 months and...we'll see!!!!
I really dare your opinion friends and if you have any question or if I can help in any ways, just tell me
It has nothing to do with it but just for you to feel how great life can be, I'm pregnant after years of failures and a sterility diagnosis...another little gift for you, that's life.
by Dchepul on Wed Jan 16, 2013 01:41 PM
First, congrats on the pregnacy. Will pray all goes well. Having that shiney spot in your life does make the day easier. My husband was diagnosed with GBM June 2012. We are now 6 1/2 months no recurrence. He is 42. Has MRI tomorrow to follow up on last MRI in November. That one showed some changes but were unable to clarify why. That said, I have been very busy the past week checking in to clinical trials. Most of the promising trials have researched have been only for patients with a recurrence. Now, there is a promising new drug called ICT-107. There are many participating hospitals for this drug so you will need to check on it. The hospitals closes to us have closed the trial for new participants. But also, the trial stated that you could not have chemo/radiation yet. But, again, another part of the study said you could have already had chemo/radiation to participate. I suggest yo check in to this study. It is for newly diagnosed GBM. I have lots of info on recurrence because that is where most of the trials seem to be focused. Good luck with everything. I know what you are going through. Keep the faith and most important, a very positive attitude. My husband has never lost either and is doing very well.
by elehope on Wed Jan 16, 2013 02:34 PM
Thanks a lot Dchepul, your words and your will to go on fighting are giving me so much strength. I'll check this new drug and if it's available in my country's hospitals. Keep being that positive, your husband is very lucky having you on his side. I apologize for my english, try to do my best:)
Hope to have good news from you soon
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