Hi, I am a new member. I was diagnosed with HPV oral cancer in Feb. after feeling a painless lump in the right side of my neck lymph node area. I had them removed and it showed cancer. After many scans, biopsies, and sleepless nights, it was determined that the primary site that this cancer spread to my lymph nodes from was unknown and not able to be found. I had both tonsils taken out as well with no luck in finding it. Currently I am on week three of radiation treatments of a 33 course along with one chemo down and two more to go. I get that every three weeks. The chemo was by far the worst experience thus far with me getting sick before I even was done receiving the drug at the infusion center. Now, with the help of Zofran 8mg. fast acting pills, I can eat something as I have lost ten pounds in the first week due to not eating from being sick to my stomach at every turn. My tongue is the most painful part of the daily radiation treatments. It feels like it is on fire and cracked. I cannot imagine what I will be feeling like in three more weeks of this. I am going for a feeding tube consultation next week as well to try and aid with eating.
I am a mother of four, wife, and teacher. This cancer has turned my life upside down. I just picked up Biotene mouth spray today and it does help my tongue for a hot minute. The dryness and mucous in my mouth, throat is horrible. I wondered if anyone has a better solution to these mouth issues. Thanks, Erin

Welcome to OCF, Erin! Welcome to OCF! You're in the right place to get info and support to help you with everything you are going thru.

Radiation treatments are progressive so the further down the treatment path you go, the harder it becomes. Radiation continues to work even after you have completed your treatments. The hardest part for almost everyone who has been thru rads is the first couple weeks of recovery. I know you have alot going on right now and you definitely do not need anything else to worry about. Most patients start to see how difficult treatments can be around the 3rd week or so of rads. The very best thing you can do to help make this as easy as possible is to focus on your intake. I cant stress this enough!!! I tend to nag everybody about this so they can avoid the pitfalls I went thru. Losing 10 pounds in the first week tells me you arent taking in enough to give your body what it needs to fight the cancer and rebuild itself from the treatments. I know its not easy but this needs to turn around immediately. Every single day you need to take in at the very least 2500 calories and 48-64 oz of water. If you can push to take more in even 3500 or 4000 calories a day isnt too much for what your body is going thru. The higher daily calories and fluids are so important that you will need to keep this up until you hit your first year of when your rads ended.

If you are in pain talk to your doc. Every single thing you need to relay to the doctor so they are better able to treat you. I know the side effects can be horrible!!! Pay special attention to any changes in your hearing even if its the slightest thing and inform your doctor. Cisplatin is the usual go-to chemo that works best on oral cancer (OC). Your medical oncologist can adjust the level of chemo given if you are struggling with the side effects. My second dose was cut in half and the third one eliminated my reaction to it was so severe. The smaller weekly chemo is much easier to tolerate, ask your medical oncologist about it.

Magic mouthwash is a big help to numb your mouth to allow you some relief when eating. Theres many varieties the doc can prescribe. I had malox, benedryl and lidocaine. Its a liquid that the patients swishes around in their mouth for 30-60seconds then spit it out.

We have hundreds of thousands of posts that contain tons of useful info. Read and absorb the info. By educating yourself about OC, you will become an stronger advocate for yourself.

Good luck!!!!

PS... Read thru our threads about Biotene. Its not what it used to be so Im not surprised it doesnt help you very much.

Welcome to the forum; i’m sorry you have to join our group of friends.

For the mucous, use a Waterpik on the lowest setting with the tongue scraper attachment (comes with the regular Waterpik, though not with the cordless, travel model) and with a bit of the magic mouthwash several times a day. It gets rid of the gunk really well. The dryness is unfortunately a condition that will persist. Bring a bottle of water with you everywhere you go and a “spit cup.” The cup can be a paper cup or a plastic disposal cup. My husband kept his in his coat pocket.

Ask for lidocaine oral rinse and pain meds. I am on week 5 of radiation. The pain has become worse as time goes on and I am taking pain meds more often.OTC oral pain reliever helps too.