So my brother ended treatment on 8/5 and we are beginning his 9th week out.

But his symptoms are not getting any better. He started cutting back his pain meds but he could only go so low before the pain kicked up and he had to back up to 100 on the fentenyl patches. His neck is shot from holding his head weird but he is in therapy for that and for speech and swallowing. In the meanwhile he is still 100% reliant on the PEG.

His biggest complaint - and reason for delaying eating - is the thick secretions. They haven't slowed down one bit. The doctors say to give it time, but he is pretty frustrated (to say the least). They all originally said 2 to 4 weeks, then 4 to 6, but we are beginning week 9.

Has anyone else gone this long with the secretions? I guess I am taking a poll - how long after the radiation/chemo did your secretions stop?

Thanks and God bless.

a

Everyone is different is an oft used phrase but so true. My secretions were thick and uncomfortable four weeks post treatment before changing. I still deal with mucous but much thinner and more in sinus cavity. Once the mucous does dissipate next is usually dry mouth which is equally unpleasant. I get concerned looking at the amount of Fentanyl he is using. what have the doctors recommended to decrease the amount? Have you asked them if his symptoms are in anyway related to narcotics? For the most part I was reliant on the PEG through week 10. Mine was due to an ulcer from RAD on my tongue that made eating painful. I am just now eating more and more each day. I began weaning off pain meds 4 weeks ago and now take 1 5mg Oxy every 36 hours. The weaning was well planned out and this week the 1 tablet goes and Motrin will be used as needed. Narcotics cloud issues and progress. Talk to the Doctors and put a plan together. That will make a difference.

Im sorry to hear your brother is having a hard time. Unfortunately recovery can take a very long time.

Soon the thick gunk will seemingly overnight be replaced with dry mouth. This change should be anytime now. Until then, the thick gunk can be suctioned out with a prescription from the doc for a portable suction machine. That should help to make him more comfortable.

Best wishes!

Waterpik... lowest setting, warm water, using the tongue cleaner attachment - it cleans up the gunk.. then rinse with the usual baking soda mixture or flattened club soda... it really helps heal. Everyone heals at their own pace. Best of luck.

In addition to the above suggestions, sleeping on an incline may help at night, continuing proper oral care, as Cheryl mentioned, and some find help with thick mucus using robotussm or mucinex, rinsing with papaya or pineapple juice, tea, water diluted meat tenderizer to rinse, drinking water often, other carbonated drinks. Some have used a facial steam apparatus, but I never used it. There are oral sponge sticks, forget name, usually green or yellow, pre-moistened, that can get in the back crevices as well.

Good luck.

Thanks, And I will ask about the suction.

Yes, the dosage is through the roof. Unfortunately, my brother had decided after getting diagnosed to take alternative treatment (mostly prayer, crystals and drum circles). So by the time he called me, he was stage four and his floor of mouth tumor as over 4.5 cm. So he was already in excruciating pain and the patches were started by the end of week one of treatment. He was as high as 175 on the patches!! They were carefully weaning him down and got to 50 last week, but his pain shot way up and he was taking 1.5 mg Oxy four times a day without true relief. So much to their chagrin, they brought him back up to 75 and he is now getting relief.



His symptoms are just dissipating way slower than everyone expects. So, hopefully the gunk, thrush, pain etc will go away soon and we can move forward to the scans next month to see if the treatments worked.

He is doing the water pik and robutussin. Unfortunately, the relief is both minor and very short lived.

My husband ended treatment July 3, and the thick stuff started getting better about 3 weeks ago. He is still on PEG tube for about 50% of his nourishment. He used the generic musinex every 4 hours for 3 months, had a suction machine, slept sitting up, wore patches behind his ear for mucous, gargles with salt, baking soda water several times a day, and his Dr. Put him on prednisone for the swelling in his throat. One week on that and everything started getting better, he is being weaned off of it now, but we don't know if that helped the thick stuff or if it was because he started swallowing soup. I discovered he could taste and swallow potato onion soup, so he has consumed a large pot a week for the last 4 weeks.

Sounds like your husband is doing everything that can be done. I find hot soup helps break up the mucus. Tea does also, rinsing with papaya or pineapple juice, seltzer water, slightly flat. Some use robotusem. Good luck.

Be careful as milk can increase the secretions so perhaps try and find something else he can taste for now.