Bone Pain post treatment

Kenny- Member Posts: 99 Member

CSN members having NPC.

Do any of you have a reucrring numbing bone pain post treatment and supported by NED?

this is driving me crazy and making me a little anxious. i am a SII NPC with 35 rounds rads and cisplatin. about 1.5 years out. A few months ago I started having a dull bone pain. PET scan shows NED. However, I can frel he bone pains just slowly getting worse. Its a mild pain that flashes for a few seconds and goes away. Mild numbing, and happens all over. The part that concerns me is it slowly gets worse.

does anyone have this experience with bone aches?  I wanted to start a thread to share and/or surveillance you did to get these wuestions answered! Thank you!!


  • phrannie51
    phrannie51 Member Posts: 4,716
    Options shins ache

    and have since I finished NPC treatment the first time in 2012.  They don't ache everyday, and it doesn't last very long....if there were mets to the bone, it wouldn't go away ever, and the pain would get worse.  Nobody has ever been able to tell me the what or why of it.  That, of course, has forced me to come up with my own theory :).  Unlike other oral cancers, they double up our treatment....and we get 5FU for an additional 7 to 9 weeks.  5FU is a nasty chemo...makes Cisplatin look friendly.  It's extremely hard on bone depletes, my theory is that our bone marrow is what aches....maybe because it has to work extra hard, or it's still trying to catch up. 


  • Kenny-
    Kenny- Member Posts: 99 Member
    edited May 2017 #3
    Thanks phrannie

    Thanks phrannie. Seems like this is a rare symptom. I've done tests and doesn't indicate anything - recent EBV DNA PCR was negative. PET scan in 3 weeks from now, fingers crossed!