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

For an epiglottis that is not functioning, the SLP gets the patient to take a sip of the fluid, then hold his breath, and then swallow. My husband was asked to do that several times during his swallow test but he could not so it (his problem is a lot of scarring as a result of radiation). I remember reading that this is a technique Brian Hill uses and it has become like second nature to him. But I can't remember where he put that post. A search may turn it up.

Thanks Kim. I've been to hell and back, but I have it good now. I eat by mouth, but I still have my peg tube, not giving that up, being I had some sort of treatment for my 7 recurrences the past 4 years, and used the peg either solely or to supplement my diet. I was lucky, although I had radiation 5x, mostly left neck, 5 neck dissections, not effecting my swallowing too much, work around some problems. although the initial IMRT did like most everyone, but most of my problms were chemo related, although my vagus nerve was removed in October, along with my carotid. and was aspirating, had pneumonia in the hospital. Later I did a swallow study, and found if I turn my neck to my lett, look down, I don't aspirate. I was NPO after my initial chemo in 2009, darn almost two months only IV, no nutrition, and was hospitalized though 2010 for 6 months, lost 110lbs, and have come a long way since. I take one day at a time, and tackle each problem one at a time, easier said then done sometimes, each day is different, but I'm ok, but I'm no happy sap to cancer either, other things yes lol, but never cancer, and like it that way. I seek revenge, and living is the best revenge. I'm not ready to raise the white flag, and think of kicking cancers tail each day, keep up on how, see my doctors, all 8 of them lol, and hope for the best. That's how I get through, survive.

All the best.

My epiglottis has had issues for 5 years and I had aspiration pneumonia from about Thanksgiving that just cleared up about 3-4 weeks ago. I aspirate about anything that goes into the mouth these days along with sinus drainage and saliva.

If your dad is being fed via peg (NPO), chances are he is having some reflux of some sort - otherwise there would be nothing to cause aspirational pneumonia.

Even with first time rads people aspirational pneumonia is very possible (depending on where rads is aimed) Ideally I would seriously look into finding out what is causing it. If there is nothing going in from above, something must be coming up from below...

There are meds that can be prescribed for this to prevent reflux.
And it really may simply be about changing the speed of his feeds and how and when they are delivered.

hugs.

In addition to the reflux, it could be the volume and timing of the feedings that can cause aspiration. Maybe see your medical team to assist with that. I also sleep on an incline, so that may help also, and don't lay down until 2 hours after a feeding, do the feeding sitting straight up, not while laying down. Hope this helps.

My husband hasn�t swallowed since his surgery nearly four years ago. I recommend an adjustable bed for your dad. Sleeping propped up is a great help in preventing pneumonia. Also, he needs to keep his mouth clean. Tim cleans his mouth twice a day, spending about 20 minutes brushing, scraping the tongue and rinsing with non-alcohol antibacterial mouth wash.

The not eating is very hard on me. I miss going out for special occasions and turning down invitations for events that include meals. So far he has not travelled by air, not wanting to have to deal with the TSA and lugging cans of Jevity. You are absolutely correct that it depends on the individual�s outlook. Tim�s odds were not good, so we are both grateful that he�s still around and functioning almost normally.

Susan, caregiver to husband.

Thanks all. My Dad was doing ice chips via the swallowing therapies directions and we thought doing quite well. She said it was only thing safe for him to try. It could have been caused by any of the things that you all mentioned.
I understand Susan completely what you are saying about the not eating. The isolation for my Dad is unbelievable. He feels that he is only existing not living. We try to help him we have our pastor come and talk to him as he will not talk to a therapist. He is on medication for the anxiety/depression but it only helps so much. I dread a holiday when the entire world will celebrate around a meal and we try to figure out how to handle it. I just wish the doctors would have prepared us for this.
The therapist think she can get him to be able to take a couple of bites eventually using the technique that Gloria mentioned but not sure about that now. Why bother if the risk of pneumonia is so high and what is the point. She said at least he could try to participate with the family but she implies getting him to be able to take a couple of bites of applesauce may take months of therapy if it works at all. They call that taking a couple of bites for "pleasure".
The ultimate decision of how to go forward is my Dad's but we do not know how to have the discussion as he gets so upset about the topic so quickly that the discussion just ends.......

Kim, I just sent you a PM.

How long has your dad been hospitalized, and does he remain so? IS he expected to return home in the near future?

Bart
He is home now and has had no fever for a week. Each set back takes a tole on him as it does for all head and neck cancer patients. He has never been a very sick person during his life. In fact I can not remember him ever having a fever until we began this journey....thank you .kim

Dear Kim, my husband is unable to swallow as a result of scarring. We used to celebrate every New Year's Eve with friends; when New Year's was approaching this past year, he was quite upset because even though he enjoys the company of his friends, he also felt he did not want to sit at the dinner table while everybody ate. Finally we told our friends that we would be there in the afternoon so that we could spend a few hours with them, then we left and went home just before dinner. It was a compromise but it helped lift his spirits.

I also spoke to our friends before the event about the need to socialize in another way, without involving eating and drinking. They understood and were willing to make the adjustment.

BTW, an ENT or a radiology interventionist might be able to carry out a procedure called CARD or TREAD which involves putting a stent in the esophagus. There is an RI who is willing to try that out with my husband but we have to wait since John is in a clinical trial. I have a couple of articles that describe these procedures, if you PM me your email address, I will send the links to you.

It took a year and a half (and 2 ER and subsequent admission to the hospital for IV antibiotics) before they diagnosed my aspiration pneumonia, but this happened 10 years post Tx. Its not fair that he is struggling with this issue so early post Tx. The entire swallowing process is quite complex and he could be aspirating his own saliva. Make sure he uses an oral rinse daily.

Gary
I have been stressing the oral/mouth cleaning process but he has been through so much that I fell it falls on deaf ears. Interesting part is that my Dad was a complete teeth freak before this second round with oral cancer. He would brush, floss and rinse many times daily. I think the thinks I eat nothing by mouth anymore so why should I worry about my teeth. We all know this is not the way it works but I understand why he feels that way as he misses food so much. Our family doctor was not positive with me during our last conversation. She said she has had patients like my Dad mostly stroke patients and they continue to aspirate and then continue to get pneumonia and that it eventually leads to death. I could not believe that she said that to me. She maintains that he will be on oxygen for the rest of his life. He is walking around the block every day and trying to get better. However, between the PEG and the 24 hr oxygen, I since that he has about given up. His radiation oncologist who we really liked said we need to see the ENT surgeon as this is a surgical issue and I wanted to slap him. I contend that both of them had a hand in this once tried to reconstruct him back together and the other fried him repeatedly. Let alone through the chemo from the oncologist in there who zapped his immune system! Any advice anyone wants to throw my way would be greatly appreciated. Does aspiration pneumonia cause permanent diseased lungs??

Kim, I'm so sorry to hear of your Fathers continuing problems with aspiration pneumonia. Yes, if it continues it will lead to scarring and reduced lung function.
Now , I'm just going to throw this out there. They can fix this by giving him a laryngectomy. This separates the wind pipe - the Trachea, from the oesophagus - the food pipe. Once this is done he can eat and drink all he likes. There would be absolutely no way he could aspirate. Maybe this would be an option?
Tammy