One patient with glioblastoma still alive nine years later
by bpp30m on Wed Oct 24, 2012 10:54 PM
ive used the search engine here and there are a few topics on this subject but nothing really tells what to do about the pain. my son went thru a second round of radiation (15 treatments) with temodar and avastin when the cancer cells spread to his csf. he was on a really high dose of dex, 24 mgs a day for 2 weeks and is being weaned down now but hes still on 14 mgs a day for this week. theyre trying to get him back down to 4 mgs a day. im guessin the knee pain is from the dex but has anyone found anything other than hydrocodone to help? he says it hits him about 4 am every morning and it affects his walking pretty bad. when i see him walk i can almost hear him grimace at every step. when this first hit about a month and half ago he lost the ability to walk and was in a wheelchair but as soon as treatment started within a week he was walking again, not sure if the high dose of steroids masked the problem or the treatment actually did the trick but he says this is a different kind of beast. he felt no pain when he was in a wheelchair he says his legs just quit working
by Ubsueg on Wed Oct 31, 2012 01:24 PM
by ourVictory on Thu Nov 01, 2012 08:25 PM
When I started avastin + irinotecan together I hade a similar problem,specifically after squatting to reach something once I stopped squatting it ceased I don't know what exactly causes the pain but I also had it in my knees and ankles. I had no more problems since I don't squat that much anymore. I had brief period in which my muscles in my rigth arm woild ache just by lifting it a little bit but it stopped a while ago. I told my Neuro Oncologist -NO- about this and never made a big deal so I self taught myself to stop squatting...
by bpp30m on Sun Nov 04, 2012 10:02 AM
thank yall for the help. our doctor assured us it was the high dose of dex that was causing the pain and hes being weened off the steroids now so it should get better
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