Good morning. Trying to figure out where to begin, my head is congested with confusion. Seems more and more post RT issues, ORN jaw, bone is exposed and no one seems to have a definitive answer as what to do for her. One surgeon tells her to use a water pik, which has been extremely painful for her, another tells her not to...same old story, no one on same page. Her dx yesterday from the dental onc was ORN og jaw, late effect of radiation, malig neoplasm ventral tongue. this dr said she thought mom was coming n for teeth-lack of communication somewhere along the line. also, didn't help that current meds list the dr printed out was WRONG...i.e. fentanyl patch to be changed every 3 hours... I know i am sounding picky but this is all about the same thing that keeps happening over and over again. Sorry, if this is confusing, having issues with my brain since car accident. i am considering calling her RO and asking to speak with him. maybe, if he gets backs in pic, he can get a plan together?? or maybe we take mom to fox chase? my parents are fried with hup. there is nothing more upsetting than watching someone you love so dearly, trying so hard, getting batted around with no answers...and no one is listening.

well, that was a complete waste of time...i called RO office and spoke with an asst that i trusted so much 3 yrs ago-today she was someone i don't know. i told her what has been going on, asked her to relay my concerns, to ro, she said she didn't know what i wanted him to do? i said, i would like him to call me back and advise what our next step should be considering that all the spec we are seeing don't know how to handle post rt. she said she would have dr or his resident call me back...i honestly don't think he will be give msg directly. do they give msg to dr or pass it along to res and not share? the ro gave me his cell # yrs ago and said if i ever had any concerns i could always call him. so tempted to use it if i don't get a true response. i know, her being out of his care for over six months maybe i shouldn't...but they all keep blaming rt and no one knows what to do...i certainly have no clue, i want to verbally blast everyone, but that is wrong and would set us back even further. I know if i could speak to him directly, he would help an d take the time to explain, and just maybe i could get mom moving on the right track. to top off the upset with mom crying earlier, my nana, her mom, called to see how mom was doing and she broke down in tears...i am in tears of fear, sadness and frustration. it truly feels like they don't care. its a business...whatever happened to first do no harm???

we will be going back to see RO in two weeks.

Hi Donna,

I hear and understand your frustrations as I have been through them. The RO my daughter had was like yours and said call anytime. If I had his cell I would call it directly and not go through office assistant. Just my opinion.

Bonnie

CALL THE CELL

I AGREE..CALL NOW!! Donna you need those answers now and not in 2 weeks. For what's it's worth {{{{hug}}}}
Love
Gabriele

Call his Cell!!!!!!

Call the cell and dont wait any longer!! Semper-Fi Bob

Computer issues, sorry for not responding back immediately. His office did call back later that day. He had to go out of town yesterday through next week, waiting to hear when they will squeeze mom in that following week. In the meantime, mom went ot see her pcp, she said she wasn't waiting for the visit with the RO, she put mom back on clindamyicin and diflucan. I am happy that she is so aggressive in that area. Mom seems a little better today, kind of coming back around. The surgeon and dental onc say that she can't be on antibiotics forever, so they stopped them...the pcp said she needs them now...i am wondering, how long can you stay on those drugs before you build an immunity to them?

Thank you all for responding.