Three months out - hoarse and pressure on windpipe

Nancy24

I'm my husband John's caretaker and haven't posted in awhile. He was diagnosed with HPV+ oropharyngeal cancer in May. Primary tumor in lingual tonsil at BOT and one lymph node on side of neck 4cm. He had 35 proton therapy sessions at Scripps with 7 concurrent cisplatin. No PEG. Lost 30 pounds. Has regained some appetite and has been eating normal food since one month post Tx.

Had CT with contrast at 2 months and was scoped. Primary tumor gone (Just a crevasse where tumor involuted). Lymph node on neck is 9% of original size. Probably scar tissue. Nothing lit up. So all good news. ENT scoped him because my husband was complaining of sore throat. Didn't see any signs of infection. Suggested possible reflux. Did see some thickened secretions behind larynx. Prescribed Omeprazole 30 minutes before meals and a nasal saline spray at night because John also has an intermittent runny nose. He was already (and still is) taking Metoclopramide (Reglan) before meals.

Other than not gaining weight because he won't drink any high calorie stuff like Ensure and is only eating 1700-2500 calories per day, his biggest issue is a feeling of constant pressure above and below his Adam's apple.  He sometimes feels like he's being choked as if he were wearing a shirt with a small neck size.  If he stretches his neck by looking up at ceiling, it feels better. I told him to stretch his neck like that multiple times, holding it in the stretch, multiple times a day. It's on the list of neck exercises that he has but of course hasn't been doing. So now I'm his personal neck trainer :-). Has anyone experienced this and does it go away on its own?  The other issue is that his voice is very hoarse and low. Both of these things seem to point to larynx which looked fine when scoped last month. 

I know that compared to many of you, his issues are very minor. We feel very fortunate that he is recovering relatively quickly and that so far everything looks good. PET scan will hopefully confirm all of this next month. 

Nancy on behalf of John

CivilMatt

update

Nancy24,

First, it is great he is doing so well, but unfortunate he has some issues.

One thing is fairly easy and has good returns is plenty of nourishment.  If he can eat normally, he can drink even easier, then get the 3k calories a day needed.  He needs to do everything he can to get healthy.

I did not have a sore throat or pressure around Adam’s apple, but choking is easy to do.  Everything is done by the numbers now.  It sounds like you are on top of this and may have to adjust to the new normal after all is said and done.

I had a tough time speaking and had some speech therapy, which really worked.

Your list is manageable and sounds doable, good luck.

Matt

Grandmax4

stretching is the answer

Sounds as if your husband is doing great, he does need to help himself now, by injesting more protien and calories~~if he doesn't, well, that's on him. Please talk to his oncologist and see if he will authorize speech therepy, regardless, of the program's name, it does so much more..teaches exercise to keep the neck flexible, swallowing, eating food correctly~~~after 5 years, I still do the exercises, otherwise my neck tightens up and is uncomforable. You have earned your care-taker badge of valor, time for him to get on board and help himself, Oh, another thing....my voice box was bowed during surgery ( his could be from treatment ) start out by humming then add A and hold as long as possible, do this with all the vowels, especially E, going higher and lower with your voice...it's awesome exercise and got rid of my hoarseness ( for the most part ) and raspiness~~~~Good luck, oh, and those stretches, he can do those on his own..go have lunch with friends, get a pedicure and manicure, time now for you!!!!

Nancy24

Thank you

thanks for your responses. John did meet with a speech therapist during treatment and has many exercise including the one you mentioned with the vowels and making voice go higher. I'll let him know that it helped your raspiness. He also does some neck exercises. We now have a code word. If I say "eagle" then he looks up to stretch front of his neck. BTW I am lucky to have friends who get me out and my husband has encouraged me. 

Nancy

wmc

Stretching can really help

Stretching can really help. I never had to have radiation, but they did a neck dissection 2 -5 on both sides and removed my larynx. I will always be numb on the left side from my chin to my ear but the stretching does help. For mine I have to take muscle relaxers daily and most likely will from now on, but I can turn my neck and have motion back to more than 95% so all is good. Just stretch it in all directions several times a day and I hope it gets better.