Any insight on how to deal w/lymphedema, swallowing and mouth ulcers?

Painful mouth or mucasitis can be treated with Sucralfate, and also ‘magic mouthwash’ made at
compounding pharmacy:
lidocaine 2 %, aluminum-magnesium hydroxide-simethicone 200-200-20 MG/5ML, diphenhydramine 12.5 mg/5 mL

If tongue white/spots, may be thrush, in which case, oncologist can prescribe anti-fungal:
nystatin 100000 UNIT/ML oral suspension.

Both
Mucositis & thrush are very painful and uncomfortable side effects of cancer treatments.

Thank you so much for the information. He was treated for possible fungal infection with Nystatin but no response so they did not think it was fungal. Sending hugs to you.

Hello and welcome to the head and neck group. Your husband appears to have some common problems with recovery and healing, which takes a very long time to overcome. There is help from this group for specific issues and ways to cope with irritation, cough, phlegm, etc.
My personal recommendation and experience is to get off of the opioids and on to OTC meds such as Tylenol. Although none of it is good for your liver and kidneys, Oxy will mess with everything that works in his body including the ability to think well. Digestive issues in particular, which can make overall health feel worse than it is, is the main reason I believe people take more of it.
Gage progress on a week by week basis. Perhaps record progress and issues in a calendar for trends. Seek out a physician for that which is not trending well. Ask anyone here on this forum for advice as someone here has certainly gone through pretty much anything you can imagine. Courage.

I had surgery for SCC of palate and tissue in May 2024, then 33 radiation tx . I had no trouble swallowing until 9 months later. I have excess mucus and saliva alternating with dry mouth. It is not fun but I doubt it will get better.
We have not eaten out in over 2 years. For mucus I take Mucinex 12 hr, Sudafed 12 hr and an allergy medication. I have tried to eliminate one or the other but it doesn't work. I don't see an oncologist, just a dental surgeon and NP at U of M. No one has any answers. Last night I woke up with mucus I don't think things are going to get bettet . I am not in pain, thank God. I take Tylenol for arthritis in my hands. I looked for this group for help. I have had a lot of therapy for speech and swallowing. It is very hard to learn to swallow again. Prayers for all.

@hrhwilliam

Thank you so much for your great advice. It can be overwhelming at times. This support group has been a great resource for us trying to overcome some of the daily challenges that we face. This is a long journey and reading everyone’s stories in the group gives us comfort and hope. Prayers to everyone fighting. Hugs to you all.

@roxanne43

Thank you for sharing your story. There are a lot of similarities to what my husband is going through. Recovery from radiation treatment has been very challenging. He has made progress though when I think of how far he has come. Sending prayers to you for better days ahead. We are in this fight with you.

Sounds like he's already doing a lot to manage lymphedema. The one additional thing that helped me was the Tactile Medical Lymphedema pump. I used mine twice a day at first. It uses light air pressure and runs for about a half hour. Mine puts me right to sleep. It reduces swelling and increases my flexibility. My surgeon prescribed it and my insurance paid for it.
https://tactilemedical.com/our-lymphedema-solutions/for-head-and-neck/
My surgeon also prescribed professional massage by my OT. Twice a week is preferred.
Good luck and prayers to you and your husband.

Hello @cbbeuch455. These radiation side effects are so tough and it sounds like your medical team has not been the biggest help. Advocating for your/his care is so necessary and perhaps asking for a referral for palliative care would offer you an alternative and new ideas. On this forum I have seen suggestions for the mucous involving Mucinex dosing daily, drinking carbonated waters instead of just plain water to cut the mucous, Himalaya Salt Candy. lemon flavor. My cancer was ear not throat but I battled oral ulcers and pain from radiation. What helped the most was a script for Lidocaine gel which I applied to ulcerated mouth just prior to eating. I did not have a stomach tube so needed to take in calories orally. With all the protein powders and drinks available now there are many ways to keep nutrition up. Dry mouth has been managed with abundant drinking to hydrate, ultrasonic humodifier beside bed all night, Xylimelts, and Biotene gel.
From other patients I have noted that those who see a speech therapist for swallowing and follow thru with exercises seem to have the best results with regaining swallowing. A family member who is about 4 months post radiation was recently scoped to look at irradiated throat area and it was found to be healing well but still moderate neck swelling. Has your husband been scoped since having these continued issues?
My experience is that these radiation burns are slow to heal. Keeping nutrition up will speed healing. I might suggest using some Manuka Honey diluted in tap water as a throat rinse/swallow. It can speed healing of other wounds and has antibacterial and antifungal effects. I buy it on Amazon and feel that the Bees & Trees brand has much research behind it and is high quality.
I am 14 years from my surgery, radiation,chemo and have metastatic SCC but never a recurrence at the original site, thanks to my surgeons and radiation oncologist. The new normal is very acceptable for quality of life but it took a loong time to get here. The fatigue comes and goes and radiation can cause long term side effects, but without our treatments we wouldn't be here to complain about them. Try to keep your husband patient and positive and hopeful. Your caregiver job is a tough one and take care of yourself first. Never hesitate to reach out for a referral for a new opinion even if it requires some travel. You will get there..... keep trying.