CancerCompass message board discussion started by sugrbear2008 on 4/29/2008 http://www.cancercompass.com/message-board/message/all,23558,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My 67 yr old mother was dx GBM Jan 08.  Surgery 1/25/08 and one round of chemo and radiation followed  .  After surgery she was doing very well but had developed what we assumed was a cold and cough & sinus infection which continued to get worse.  Affected her equalibrium, headaches, sinus conjestion, severe coughing....etc.  Her PCP finally cultured her sinuses and found 'pseudomonas aeruginosa', an infection transmitted to her during her tumor resection surgery.  They treated her with Fortaz 2x's a day for 10 days (IV therapy) which ended one week ago.    Sunday she got dizzy, lost her balance (while walking with a walker) and fell.  They re-cultured her today and the infection is still there and going strong.  They are now going to try to treat with some type of antibiotic nasal inhaler.  My concern...they have decided NOT to progress any further with her treatments.  No chemo...nothing.  Her baseline MRI today showed that the tumor has shrunk somewhat with the radiation and chemo.  They have already postponed her continued treatment for a week and now say it will be at least another month or two before they will start back with any treatment due to the infection.  They don't think she can take it.  I am concerend about this.  Everything I have read indicates that aggressive treatment is needed to stay progression free.  The hospital has asked if my father wants to file an incident report, but he is afraid to as Mom is in a clinical study and he thinks they will treat her unkindly.  In addition, I am concerned that because she is in a clinical trial, if she doesn't stay on the course of treatment she won't be eligible for the clinical study any longer.  I think an incident report should be filed so this doesn't happen to anyone else.  They believe the bacteria was transmitted thru the tube in her nose during surgery.   I am 1000 miles away from my parents and my mother is so sick now that my father is consumed with just taking care of her.  I want to intervene on their behalf, as this infection has caused additional travel and medical expenses, not to mention using her Home Health visits on Medicare to receive the IV treatments.  She is going to need them later down the road.Can someone please give me some advice or direction?  I don't know where to turn. I am inclined to go to the risk managment department of the hospital.  I can't imagine they wouldn't want to make it right.  This infection has completely wiped her out.  She said the surgery and treatments afterward were nothing compared to this infection.  She sleeps 21 out of 24 hrs a day.She is seeing an ENT tomorrow.  Any help or advice would be greatly appreciated.  Thank you.    sugrbear2008 Tue, 29 Apr 2008 00:00:00 GMT Perhaps one of the medical professionals on here could comment about the politics of filing an incident report. I myself am not sure what that means in terms of the treatment your mother would receive or how that might affect her status in the clinical trial. Her neuro-oncologist would be best equipped to answer the question about the clinical trial status. I would find it hard to believe with as compartmentalized as hospitals seem to be, that your mother would suffer any backlash if such a report were filed. What would filing the report do in a positive way? Would the hospital absorb costs associated with the treatment? Would they reimburse your father for out of pocket expenses, or the insurance company for what they have paid for infection related procedures? I think more importantly if it brought the issue of infection to the forefront so the facility could deal with it proactively, that would be positive, but I can't believe that isn't automatically done when something like this happens. As for dealing with complications from infections, I can speak to this a little. After my wife's craniotomy, she developed a infection at the surgical site that she spent the better part of a year fighting, that caused her to develop a large fluid buildup, resulting in three more surgeries, some of which would not heal. Finally 10 months after her first surgery, she had a radical procedure to correct the infected tissue, which has left her with her bone flap permanently removed and several skin grafts on her scalp. This interrupted her treatment as well, after completing the initial 6 weeks of radiation and Temodar, she had to wait about 8 months before beginning her 5/23 Temodar treatments. Her MRI's have been all clear since the end of radiation even with the long delay in treatments. Everyone is different, and I can relate to your frustration with the complications your mother is enduring, but hopefully she can begin treatments soon. Right now, the obvious issue is the infection. Good luck with everything, you and your family are in my thoughts. Brandon-cg Tue, 29 Apr 2008 00:00:00 GMT Thank you so much for sharing your thoughts and experience.  I will encourage my Dad to talk to risk management.  I am so sorry to hear of your circumstance.  Please know that I have found comfort in your words and am grateful for them. My thoughts and prayers are with you and your wife and family.    God bless you.    sugrbear2008 Tue, 29 Apr 2008 00:00:00 GMT