Missing late end radiation treatments due to uncontrollable coughing

Posted by blulady @blulady, Mar 10, 2023

My husband, 68 years old, has oropharyngeal cancer (Stage 2) of the tonsil HPV 16+ and has completed 6 rounds of a 6 chemo plan and 29 rounds of a 35 radiation plan.
During the last few days/nights he has had severe coughing jags at night with excessive mucus lasting for several hours and smaller ones throughout the regular day. Unfortunately with no sleep and daytime he has missed 3 radiation treatments in a row becuase 1) he is exhausted, in sever pain, and unable to lay still for the 10minutes in a mask and on a table for the 10 minute radiation treatment. We have been unable to get any relief and quite honestly we feel like the oncologists are ghosting us. His vitals remain strong but his weight loss is increasing. What are we missing? What else can we do?

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mrj08 | @mrj08 | Mar 11, 2023

Hello. I'm sorry you're going through this. My husband is at about the same stage of treatment as your husband. I'm also a hospice RN so in my opinion he needed some symptom management. Does he have an opioid pain reliever? That will help control the cough. He could take it 45 minutes to an hour before radiation and it should be effective during treatment. Also, is her doing tube feedings? My husband lost 22 pounds really fast and I put him on a strict schedule with the tube feedings and medications. His cancer team is happy with his progress and he's been able to put back on some of the weight. Good luck to you both.

blulady | @blulady | Mar 11, 2023

Thank you so much for connecting with me and providing what sounds like some good advice. I too am sorry you are going through this..
After telling our medical oncologist and radiation oncologist we were going to palliative care they immediately responded that he didn't need that but now there were some things they could do to help manage his symptoms. They are prescribing medrol, tessalon and hydrocotin but I need to keep reminding them that he can't swallow pills and needs some form of liquid.
Also, as for tube feedings (PEG tube in the stomach) we have had some very bad experiences with that including no surgical post op or training (finally was able to secure that but it took a while), 2 trips to the ER, the tube falling out less than using it for 5 feedings, etc. Right now neither one of us is comfortable doing the feedings after the surgeon reinserted the tube in a painful procedure 4.5 hours after it fell out and told us he couldn't guarantee that this wouldn't happen again. However. I'm thinking we are going to have to find some kind of way to get them done. Any ideas? How many feedings a day would we need to do?
We are still continuing to talk with Palliative Care Services for additional help.

suz22 | @suz22 | Mar 11, 2023

I'm very sorry both of you have to go through this. I had badequate of the tongue and left tonsil cancer. I have bad throat pain since I can't drink or eat by mouth. I had many horrible coughing spells. My ENT told me to take Mucinex DM for the coughing. They also prescribed Oxycodone for my pain. Both of these work very well for me. Just try to buy a bottle of Mucinex DM and see how that works for him. You can buy it over the counter. For the horrible mucus, I hope he has a suction machine to use, cause that can be problematic and hard to cough it out. Hope this helps.

cctoo. Catherine Crowley | @cctoo | Mar 13, 2023

maybe he has pneumonia!!! Also he probably has hsd most of nerded radiation!!!

blulady | @blulady | Mar 15, 2023

In reply to @cctoo "maybe he has pneumonia!!! Also he probably has hsd most of nerded radiation!!!" + (show)

was checked for that and he does not have pneumonia.

blulady | @blulady | Mar 15, 2023

In reply to @mrj08 "Hello. I'm sorry you're going through this. My husband is at about the same stage of..." + (show)

mrj08 | @mrj08 | Mar 15, 2023

In reply to @blulady "Thank you so much for connecting with me and providing what sounds like some good advice...." + (show)

That has really been some horrible experiences with the feeding tube. I have not experienced anyone's feeding tube coming out right after being inserted. I think that's pretty rare. My husband meets with a dietician that works with the cancer center and he had shown him how to do it. I've had a lot of experience with them also but it's great to get education from someone else also. My husband crushes meds and puts them through his tube as well as liquids. It just makes things easier so he can heal from the treatments. If you went with a palliative care program the nurse can provide education and help as a go between you and the doctor to help with symptom management. Our cancer center doctors are also palliative care certified so I thought that was the standard but maybe not.

Jody aka mojo244 | @mojo244 | Mar 20, 2023

I too had the same problems however my oncologist had me on a strict pain management which included Fentanyl and liquid opiates.
As for the cough, I was on liquid suppressants as well as a Teslon Pearl.
I still suffer from thick phlegm after 6.5 years! In the morning I run tap water until hot. I then rinse my mouth several times and swallow the hot water. After each swallow of water I hack up the phlegm and spit. Some days require several rounds of this!
Hope this information helps!

MOJO