Anyone else having this problem? I know my Dad is only about four months out of his second round treatment with this beast but we are now on our third round of antibiotics and the pneumonia as moved to his right lung as well even though he has had nothing by mouth. His fever has subsided and we thought he was getting better but the x-ray shows the pneumonia in even more places now?? We are frustrated to say the least. He survived the 10 hour surgery and the second round of radiation(his first was 8 years ago) with chemotherapy and a fabulous fight with c-diff. What next!!
Is his life always now just sitting with the drip drip drip of the gravity bag and taking his temperature to decide whether we go to the ER or not?!?
Somebody give us some light at the end of this tunnel, please..........

Kim - I'm so sorry to hear about how rough it's been for your Dad. I know how worried you must be. Seems like a lot of people do get this type of oral cancer related pneumonia. I'm sure you will hear from others with more knowledge or more recent experience than what I can give you. My son had problems with aspiration pneumonia and when it was over they was a spot on his lung but it was just scar tissue from the pneumonia. That was 7+ years ago and he doing fine, now. I hope your Dad gets some good news soon.

Thank you Anne-Marie. Just your kind words made me feel a little better.
He surely deserves some type of good news. Knowing he will never eat or drink again was something none of us were prepared for. He just can not accept it.
Now this aspiration pneumonia.....we can not figure out what he aspirated on......so hard to fix if you do not know what caused it in the first place.

Kim , aspiration is caused by a non functioning epiglottis. This will let any fluid slide on down into the lungs instead of going down the oesophagus
This also includes any saliva. Fluid in the mouth with teeth brushing. Just swilling the mouth out with fluid will mean some goes into the lungs.
I am so sorry that your Dad is dealing with this.
Have his team discussed this issue with you both and more importantly have they offered any suggestions or options to deal with it?
Tammy

Like Tammy said, your dad's epiglottis could still be swollen from the effects of the radiation. The RO can see it with a scope. It was the case for my husband six or seven weeks post treatment. His doctors could arrange for an x-ray swallow test to see if the epiglottis is the problem. Does he, by chance, use a c-pap machine? If so, the mask and the tubing need to be washed every week or there will be a chance of bacterial pneumonia.

Hi there... Okay I started this 5 times... Then rebooted my computer as there was clearly something the matter with my touchpad or keyboard. Anyway...

Tam is right Aspiration can be caused by a poorly functioning epiglottis. This is often caused by damage from radiation... However, he should have a swallowing test to determine he exact reasons. Sometimes an adjustment is all it takes to fix things. He's only 4 months out. Being older, and this being his second time around it will take longer to heal.

My father in law had his esophagus removed and stomach pulled up to become a new esophagus. He has no sphincter at the entrance to his stomach where there should be one, so he was getting a lot of aspiration, (related to gastric reflux) His swallowing is fine, but he was still aspirating. There were a few techniques offered to him to help him with this that have all but solved the problem.

What I am saying is there may be ways around the problems he is experiencing. Being on feeds it could be that he is getting a bit of reflux as well. This can also cause pneumonia.

Maybe slow down his feeds and run them on a pump overnight so he is not tethered to the machine all day and gets the bulk of his nutrition overnight. (this will go a long way towards making him feel normal by allowing him to move freely during the day).
Getting up and moving will help him as well.

ultimately take him to have a swallowing test done. Find out exactly what is going on. I know how you feel - my father in law was a right mess after his surgery. sometimes it just takes a bit longer. Radiation has far more impact than surgery.

hugs.

Thank you everyone for the suggestions. My Dad did have a swallow test on February 4 and his epiglottis is not functioning. No one however mentioned that aspiration pneumonia could result. The disturbing part is that it was just in his lower left lobe and now after two rounds of different antibiotics the new chest xray said it is still in the left and is now in the right as well. I am just trying to do some detective work to try and keep it from happening again. His fever has now been gone for about 4 days after over 2 weeks with one so we thought he was getting better but the xray shows differently. He did try a CPAP machine for about 3 weeks in February but could not stand it so it is gone. I believe after two rounds with the dreaded mask in radiation and having a trach for almost 4 months that he is very frighten with anything on his face that in particular messes with his breathing. I think he needs the machine and the test say he does but he feels otherwise and it is his call. Being on 24/7 oxygen with the pneumonia has helped at least the oxygen level at night. I just do not want the infection to spread ultimately to his bloodstream and get us in a whole heap of trouble. The speech therapist said they do not want to do another swallow test until he is better but not sure what better means and then when we do find out the results what could possibly be done about it!?

My big question is how long with it take to ever get over the pneumonia and bigger question will he ever get over it.....his team at the CCC that we go to do not offer much conclusion since they say they do not have many patients who have had radiation treatments twice.

From reading your signature, your father had three rounds of radiation, which included IORT, plus a flap, which I had in a different location, and is like 3x the dosage in IMRT, so can see how this impacts his swallowing capability. As far as aspiration, everyone offered very good reasons, and understand your concern for this infection to go systemic, which happened to me, including c-diff, and seems like the priority right now. I was hospitalized, don't recall everything done, but was given IV antibiotics, plus was NPO for a while, meaning no food or liquids by mouth, and had no peg tube in the beginning, was suctioned, etc. They did use my port to give TPN feedings at some point. As mentioned, I would go to the ER, if needed.

Good luck with everything.

Paul
Sorry to hear that sounds like you were pretty sick as well. You are correct my father had essentially 3 rounds, eternal beam 8 years ago, IORT during surgery and IMRT after surgery. We knew we would be challenged but none of the doctors including the RO said it would be this bad. My Dad is struggling to think that the radiation treatments the second time around were a good choice as we all are. Are you still NPO and if so do you receive all of your nutrition via PEG? I know alot of all of this is a person's outlook(ie glass half full or glass half empty kind of person) but how do you deal with everything you have been through when it comes to daily living. How have you prevented the return of aspiration pneumonia?
Thank you for taking the time to respond. Kim