I’ve had a white patch under the side of my tongue in back for over a year. I haven’t seen a dentist bc I don’t have dental insurance but I have seen an ent. The ent thinks it’s due to friction & says not to worry, but now I don’t know..little scary. I don’t smoke or drink either. Is your white spot flat? Mine is. How big?

Everyone heals at a different rate depending on age, health, dosage of rads etc. For me, I came off the pain meds 7 weeks after completing rads, but my ulcers didn't heal until 5 months after I finished rads.

Thanks for responding Paul, you certainly have been through the ringer. We are meeting with the doctor in July and that is one of the many questions we have.

Good luck to you and take care!

yes Paul. 5 treatments. Monday, Wednesday, Friday last week and Monday, Wednesday this week.

thank you for the information!

I am almost 9 years out and continue to get sores on my cheek intermittently that will eventually go away after using orajel (or something of that nature). Though I had radiation to my entire lower mandible and the cancer was in my tongue, it only happens on the left side (where my cancer was) cheek and it’s usually toward the back. I feel like they start due to stress and then when they don’t go away the rubbing of my teeth makes it worse. I’m just curious if anyone else has dealt with this post radiation, especially this far out.

Thanks,
Marie

Female,33 yrs old,Non-Smoker/Social Drinker, HPV-
T3 N1 M0 SCC Dx 11-10-11
11-23-11 Left Hemiglossectomy
11-30-11 Modified Radical Neck Dissection
01-25-12 Removed another spot on BOT, skin graft (left thigh)
38 RADS Tx Finished April 13, 2012
Fall 2014 - HBOT due to wisdom teeth extraction post radiation

Thank you Mokie, Connie and Thankful Girl. It took 4 days for the hole to fully heal and I've enjoyed a long soak in a deeply filled bath. Bliss! Swimming pools should be opening up in the next couple of weeks. Not sure how it's going to work with social distancing still in place. Some zoos are open but you have to purchase your ticket in advance, so they might do that. We'll see. I have to buy a new swimsuit as I've lost a total of 38kg since Jan 2019.

Hope you are all doing well xx

I had both sides dissected. I moisturise my neck with a nice rich moisturiser every day after a shower. Gentle but firm. Then I turn my head each side for 5 times, repeating for 3 times. This is what my physio told me to do. It really helps

I finally saw my oncologist about this as well and he had no answers either, wants to wait for my first scans to see what they show, but won't treat the pain in the meantime.

I think I figured it out for myself, however. After my gabapentin ran out (no one will refill it for me), I noticed that the more nerve pain/buzzing/tingling/etc I experienced the more I tended to stick the left side of my tongue to the side of my mouth and kindof suck on it or clench my left jaw. I think those subconscious actions are causing the masseter muscle to overwork and cause pain. I got more gabapentin from a friend and after weeks of being on it steadily and weening off of my 1000mg of Tylenol and 800mg of ibuprofen every 6 hours (now down to 2 Aleve a day) I'm nearly pain free and my tongue, while not completely comfortable, is quite tolerable.

Wanted to document this for anyone else experiencing it and having useless doctors like me.

I just remembered another resource that may be helpful. The American Cancer Society (ACS) is all across the US and may provide cancer patients with their choice of a small grant. I was helped thru ACS quite a while ago (12 years ago) so this program could have changed. Theres a form to fill out and something to give to the oncologist to fill out before the one time $300 grant is given. amount of $300 grant could have changed. The options back when I was given the grant were as follows... either a wig, reimbursement for travel expenses to doctor or treatment appointments, personal prosthetic (for mastectomy patients), or a pharmacy credit to help cover prescriptions or co-pays. They're available 24/7 so its ok to call them any time of any day to make inquiries. They could have other assistance programs that Im not aware of at this time.


The ACS also has a volunteer patient transportation program where survivors drive cancer patients to their doctors or treatment appointments. I was very surprised when volunteer drivers who were cancer survivors drove me back and forth to my treatments a few times. I never expected anyone would drive the 45 minutes up to my house in the woods back down to treatment center, then take me home and drive back home themselves. Its worth a try even if it seems to be a great distance so you never know. I only did it a couple times but it was really nice to have a former cancer patient to talk to and give my 17 year old son a break from the long commute. When I got better, I was a volunteer driver for 10+ years which has always been a great experience helping people one on one.

Best wishes with everything Connie!!!