One patient with glioblastoma still alive nine years later
by miamib on Wed Feb 06, 2013 03:27 PM
I hope everyone is doing well and may G-D bless you all with a speedy recovery and hopefully a cure in the near future. I have a diffuse Astrocytoma of which 50% was removed with the other 50% beinf too dangerous to remove due it's "fingers" near healthy brain tissue. is it possible that chemo or radiation can get these fingers and possible kill them completely? Does anyone have a similar experience or knowledge with a diffuse astrocytoma? Thanks in advance for your reponse!
by Bee_Rich on Wed Feb 06, 2013 06:14 PM
i have a diffuse infiltrative astrocytoma thati is inoperable b/c it is in my motor strip. also these tumors comingle with brain tissue makingphysical removal difficult. the stuup protocol (radiation +temodar chemo) is considered the gold standard'. crossing fingers here as i finished radiationlast week and am in the 'holding pattern' b/f startin maint. temodar in march
by miamib on Wed Feb 06, 2013 07:07 PM
bee rich thanks for getting back to me. I hope the radiation does well for you and can kill more or all of the tumor. Did you have any of the tumor removed at all? How is the radiation affecting you since beginning?
Thanks and I'm hoping the best for you!
by miamib on Wed Feb 06, 2013 07:52 PM
Is it ridiculous to say that having a partially removed diffuse astrocytoma is worse than having a GBM which can be completely removed?
Obviously they both suck and I hope they are cured soon with G-D's help of course.
Thanks again in advance
by Bee_Rich on Wed Feb 06, 2013 10:41 PM
miamib, i was not a good candidate for surgery, as iy likely would have caused gross motor defects. in fact, i bled after the biopsy resulting in a stroke, w/ left side flacidity. spent weeks in rehab and now am in out patient rehab. the surgeon was quite affected. said noone had bled in five years. hewas so happy i regained some use of my arm that he even took a pic of me raising my arm when i came bac in for seizure complications a month later.
the radiation and chemo is about as expected. fatigue &nausea.minor memory loss.I drop things now, but we laugh about it!
developed left arm tremors 2 weeks in and have rashes over most of my body.Docs are managing things well. I take supplements, including the ben williams protocol(google search) I don't consider it too bad.
as Nemo says, "keep on swimming"
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.