One patient with glioblastoma still alive nine years later
by Janeg on Mon Aug 14, 2006 12:00 AM
by Cavman on Mon Aug 14, 2006 12:00 AM
by Pauldbld on Tue Aug 15, 2006 12:00 AM
by Junesurviving on Fri Aug 18, 2006 12:00 AM
by Janeg on Fri Aug 18, 2006 12:00 AM
by Mark_C_2 on Wed Jan 21, 2009 12:00 AM
I got the "mask" last week and just did a CT with the "mask". Weird is all I gotta say. I hate being confined like that but am glad to hear form folks lke you. I start my treatments Feb 10, 08.
Any of you folks still around on this log? Love to hear how your doing:)
by skiffin16 on Sun Jan 25, 2009 12:00 AM
On 1/21/2009 Mark C wrote:I got the "mask" last week and just did a CT with the "mask". Weird is all I gotta say. I hate being confined like that but am glad to hear form folks lke you. I start my treatments Feb 10, 08. Any of you folks still around on this log? Love to hear how your doing:) Mark C
Mark, I'm new to this log as well....
I have only had the mask made, and will need to where it tomorrow Monday January 26th, 2009 for the inital PET scan. I was pretty shakey during that process which took about 15 minutes or so.
I'm hoping to figure out a way of dealing with wearing it as well. After the PET scan tomorrow, I won't wear the mask again until I start concurrent chemo and radiation. That should be around nine weeks, as I start chemo treatments this Thursday for that amount of time.
From what I understand, during the concurrent period, I'll have radiation treatments five days a week for seven weeks.
by skiffin16 on Sun Feb 08, 2009 12:00 AM
I haven't heard from you for awhile, have you started your treatments yet? I start the chemo tomorrow (Monday 9 Feb 2009). Nervous to say the least.... I did have one more bout with the mask, during the PET scan. I had to wear it for 8 minutes after the 30 minute PET scan, it was a lot easier than the first time, but it still was uncomfortable. I managed to keep my composure and deal with it.
by wingman723 on Thu Mar 12, 2009 12:00 AM
I am new to this forum,but not to these treatments.
I was diagnosed with Estesionueroblastoma (aka Olfactory Nueroblastoma) in November 2005. I had a mask created for the 30 or so radiation treatments. That was a facial mask -- covered the forehead to the neck. That process was not too bad.
Recently, I've had a recurrence in the left neck. Fifteen lymph nodes were removed; three of them affected with the same Olfactory Nueroblastoma. A 12cm x 12cm muscle was also removed as the thing had broken through one of the nodes and was invading the muscle. Today I had an appointment to have another mask created. This one was not nearly as calm (relatively speaking) as the first go. This time the arms were pulled down towards the feet with long bands around the wrists that were tensioned by strapping around the feet. This mask was also larger -- from the forehead to just below the shoulders. It is a bit unnerving even for those of us who do not consider ourselves claustrophobic. You've absolutely got to put yourself [mentally] somewhere else and cannot focus on what's occuring at the moment.
The biggest challenge I had was that my neck is still quite tight from surgery and laying flat with the head all the way flat puts a little strain on the neck. That tightness combined with the difficulty in swallowing in that position made me feel as though my throat was clogging at times when I'd swallow with the mask on. My biggest fear is suffocation -- not being able to breathe. Anyone else deal with this? Any suggestions? My next round of treatments (another 30 or so) begins in just over a week.
by Mark_C_2 on Thu Mar 12, 2009 12:00 AM
I recommend bringing in your own CDs and listening to music you enjoy. This helps me "go someplace else" while getting treatment. Also have them turn a fan on. I find if I'm a little cold it helps. Good luck:)
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