Tomorrow will be 5 weeks from radiation....

Posted by kent8692 @kent8692, 2 days ago

5 weeks tomorrow from last radiation (33 total) for HPV neck cancer.... What a trip. Some very dark days were had.... Feeling a little better every week. Main complaints now are dry mouth and afternoon fatigue. Taste is slowly coming back - still muted but I'm hopeful for continued improvement. The fatigue I can deal with (going to work 7 hours a day and then crashing in the evening) but the dry mouth is really something else. Seems like it got way worse just in the last few days - I am hoping it's not this bad long term. I have read that my right-side saliva glands should eventaully come back "online" as they took less of a radiation hit than the left side where my problematic lymph node was located. Until then, I will always have my water bottle:)

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Have you tried 9.0 ph canned water? My husband stole my good Tervis with my name on it a friend gave me for Christmas lol - really keeps the ice from melting- meanwhile I was drinking melted ice coffees, so I just scored a light blue Stanley Cup for him today - on sale for $16 at Ross!! I think the screw on top is better for being spill proof, anyway. Radiation does seem to wreak havoc with very slow healing. Mouth is worst part. Magic Mouthwash with 2% Lidocaine helps, from compounding pharmacy.

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kent8692, I hear you. For the first 10 years, I couldn't go anywhere without a water bottle. I wasn't aware of many of the products out there to help with dry mouth. Things have improved since then, and reading here, I see a lot of people are having greater success. Hopefully, this will be the case for you. Good luck!

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I had tongue cancer including reconstruction and neck dissection in late 2023. My taste came back quickly. But it faded whenever my lymphedema flared. I had persistent lymphedema along my scarline and by using self massage, professional massage and my lymphatic pump I was able to control it. Cold also altered my taste. Ice cream would taste sweet for the first few bites then switch to salty. I think it was basic nerve conduction. Stimulating the nerves releases saliva and processes taste. Inflammation like lymphedema interrupted the nerve signals leaving my taste reduced or absent.

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@kent8692 you have a long healing process ahead of you and I'm happy to hear that you are having some improvement in taste. This radiation damage heals slowly, like months to years. It becomes so gradual that you don;t notice the improvement right away. Dry mouth is something that will likely improve but I still deal with it 14 years later. Some people on this forum have used hyperbaric oxygen treatment to speed healing but I have no experience there.
I have found that just staying hydrated makes a big difference in my dryness. While we thing we are drinking a lot because of constant sipping, sometimes more quantity is needed. Electrolyte drinks can actually hydrate better than water sometimes.
I like the Biotene products like the mouthwash and gel, havent used the lozenges much and don't feel the spray is as helpful. I use Zylimelts at night, a little tablet that sticks to your gum to release Xylitol over hours for saliva stimulation. A cool mist ultrasonic humidifier at night by the bed helps. Others on this forum have used a Himalaya Salt Tablet candy purchased on Amazon. I am currently trying those now. A very refreshing feel to my mouth thanks to the menthol in there and it lasts a while. Sipping ice water right after a candy yields instant brain freeze!
That's a lot of work hours while trying to recover from radiation fatigue and I admire your dedication. Do you feel your strength returning since you are back to work or just still too tired to tell?

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Profile picture for Sue, Volunteer Mentor @sepdvm

@kent8692 you have a long healing process ahead of you and I'm happy to hear that you are having some improvement in taste. This radiation damage heals slowly, like months to years. It becomes so gradual that you don;t notice the improvement right away. Dry mouth is something that will likely improve but I still deal with it 14 years later. Some people on this forum have used hyperbaric oxygen treatment to speed healing but I have no experience there.
I have found that just staying hydrated makes a big difference in my dryness. While we thing we are drinking a lot because of constant sipping, sometimes more quantity is needed. Electrolyte drinks can actually hydrate better than water sometimes.
I like the Biotene products like the mouthwash and gel, havent used the lozenges much and don't feel the spray is as helpful. I use Zylimelts at night, a little tablet that sticks to your gum to release Xylitol over hours for saliva stimulation. A cool mist ultrasonic humidifier at night by the bed helps. Others on this forum have used a Himalaya Salt Tablet candy purchased on Amazon. I am currently trying those now. A very refreshing feel to my mouth thanks to the menthol in there and it lasts a while. Sipping ice water right after a candy yields instant brain freeze!
That's a lot of work hours while trying to recover from radiation fatigue and I admire your dedication. Do you feel your strength returning since you are back to work or just still too tired to tell?

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@sepdvm I feel a tiny bit better every other day it seems...Little victories adding up give me some hope for the future. I don't know if I'm getting stronger yet - I am so tired after work...so tired. But it is good for me to get my mind off my situation and work helps with that, so the trade-off is worth it. The dry mouth came on out of the blue in just the past few days and has me a bit worried about the future. I'll take it over the mucus and phlegm that I had the first two weeks of recovery - that was a nightmare, and it was so gross...One day at a time:)

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