Hi
My husband, 76, had oral cancer 20 years ago, soft pallet, half tongue and jawbone removed. Is unable to swallow, suck, blow or move anything in his mouth as tongue is tethered. Started off with PEG but once when it got blocked taught himself how to 'dump swallow' by gravity, 'drinking' his liquid food and cups of tea, but after a chest infection a year ago was told to be nil by mouth. Since then, I think because he is no longer washing the phlegm down, he has constant phlegm in his throat and is getting chest infection about every 2 months, and his jaw has now contracted and wont open (neck area in general is gradually contracting, head pointing down).
HIs spirit is so low, he has no quality of life. How do we get lessen this thick phlegm? He coughs constantly and finds it hard to speak without coughing. Is reduced to coughing over the sink and pulling out what hangs out of his mouth, constant use of suction pump. Any suggestions gratefully received.

Welcome to OCF! Congrats to your husband for being a 20 year survivor!!! He is one very fortunate man!!!!

If your husband has alot of phlegm, ask his doc about getting a portable suction machine. I dont know if that is what you meant by a suction pump? The portable suction machine is the best thing to help patients with phlegm. He will need to get a prescription from his doctor to get this from a medical supply company. I also suggest using a waterpik on its lowest setting to help keep his mouth extra clean and help with removing phlegm. By adding a tablespoon or 2 of non-alcohol based mouthwash to the warm water it will help his mouth to feel fresher. Extra water also helps to thin phlegm. He may also want to rinse his mouth at least 3x a day with a mixture of warm water, 1 tsp baking soda and 1 tsp salt. He should swish the mixture around in his mouth for at least a minute before spitting it out. If he is coughing alot, how about a humidifier used in the bedroom at night? What about cough medicine? Check all the suggestions with your husbands physician. Could he have thrush? Maybe thats also bothering his mouth?

You may also want to ask his doc about something to help with your husbands depression. Many patients (especially men) are reluctant to speak to a therapist or take meds to help them cope with the drastic changes their life has gone thru since having cancer. Depression is very common among oral cancer patients, and not surprisingly their caregivers too. This wont go away or get better on its own so hopefully your husband will be open to giving a therapist and/or medications a chance. Some meds take 4-6 weeks before the patient sees a difference. Its worth a try, at this point he probably feels he doesnt have anything to lose. I also have many major after-effects from OC.

Maybe your husband would benefit from things Ive picked up after having oral cancer (OC). My life is dramatically different than what it was like before I had cancer. In many ways its so much better, more fulfilling now. Ive always been a positive person who likes to find the good point in every situation, even the bad ones. Ive also been overly independent which has helped to get me thru some pretty rough situations after having cancer. I dont know if these traits have helped me cope with my much altered after-cancer life. Everyone needs a purpose in life, a reason to get up in the morning. Ive found that here at OCF. I have also found great satisfaction in being able to help others. Maybe being able to talk with others who have been thru OC would help your husband? AT OCF, we have walk/run events all over the country where free OC screenings are done and OC survivors get together. I think given the opportunity to meet fellow OC survivors would have a big impact on your husband. Maybe it would help him to see that even with limitations, there are many others out there like himself. Some have it far worse while others have bounced back with barely any noticeable signs of having gone thru OC. Its worth looking into.

Good luck!!!

Hi, i would just like to say that aspiration pneumonia can be dangerous and it can occur again and again, so, the doctors are right in telling your husband to stop feeding by mouth. You did not mention how your husband is taking his nutrition, whether he has now gone back to using the PEG tube. My husband's home care nurse taught us a little trick for a blocked tube. We just put in a syringe of a soft drink -- like Coke or ginger ale or whatever. It shouldn't be flat though as the "trick" depends on the bubbles in the carbonated water pushing whatever is blocking the tube up and the blockage is resolved. We tried several times and each time it worked. Of course, we were advised to go to the ER if the trick should fail. But we never had the need to do that -- aspeiration pneumonia, though, sent my husband to the hospital several times.

Is your husband using Ensure or Boost or something similar? Have you considered using a nasal tube?

I don't know about the phlegm situation. But the speech and language pathologist told us that even if my husband wasn't taking in anything by mouth, his saliva could still get into the lungs and over time, it might become a problem. Not taking in anything by mouth does minimize the chances of aspiration pneumonia.

I fully understand how upsettting the situation can be as I was there myself. It's very hard to be a caregiver when there's seemingly no solution to the problem. I would strongly suggest that you talk about this with your GP, or get a referral to a speech and language pathologist at the hospital. They can advise you and your husband on what to do and they may have a solution for the problematic phlegm. There are feeding specialists at the hospital, not just for cancer patients or survivors but for the elderly as well. Please do go and make use of their expertise.