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Introduce yourself
Yesterday at 12:55 PM
I've posted this in the past, I hope it helps. I've also sent PM.

Based on my experience having had two operations for oral cancer since 2003, I would like to suggest four thoughts for newcomers.

1) Since oral cancer hits only about 1% of the population, seek professional care from a medical center that specializes in cancer and has oral cancer specialists on staff (CCC)

2) Don’t be afraid to travel extra hours to such a center-your disease can be life threatening.

3) Follow-on care may be done at a location closer to your home that the cancer center works with.

4) Don’t wait to get help, and don’t second guess expert opinion but do get a second professional opinion if concerned.

In some cases where they take lymph nodes they will probably do an RND, (radical neck dissection). Be prepared for a scar across your neck.
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Symptoms and Diagnosis
07-05-2020 11:25 PM
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?
2 66 Read More
Long-Term physical and QOL Issues related to treatment
06-30-2020 03:00 PM
Hi everyone

I look around at the issues people have to cope with here, and my problem is trivial by comparison. But I searched on the subject and I find mentions but no post specific to neck spasms so if there are any tips they might be helpful to others.

I get very sharp cramps down the right side of my neck. The pain is an 8-9 and it lasts for 10-20 minutes. No amount of rubbing or head movement provides any relief.

Are there any tips for fixing this?
0 49 Read More
After Treatment Issues - immediate post treatment
06-29-2020 10:33 AM
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.
1 230 Read More
Introduce yourself
06-29-2020 10:29 AM
I was prescribed hydromorphone and lyrica. Took a while to get the dosage right but eventually effective.
5 665 Read More
Eating, Speech, Swallowing, and Alternative Feeding
06-28-2020 04:07 PM
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!
2 309 Read More
Long-Term physical and QOL Issues related to treatment
06-26-2020 01:24 PM
Carolyn,

Welcome to the forum. You have posted on a really old thread and it’s likely the person your post is meant for will not see it. To get some response to your question, maybe you would like to re-post under the thread ”Introduce Yourself” and include some information about your husband’s diagnosis and treatment. Hopefully, someone will be able to respond.
43 31,527 Read More
Oral Cancer Recurrence
06-25-2020 04:49 PM
yes Paul. 5 treatments. Monday, Wednesday, Friday last week and Monday, Wednesday this week.

thank you for the information!
2 236 Read More
Symptoms and Diagnosis
06-23-2020 02:17 AM
I am seeing an oral surgeon on Wednesday and hoping that they will do a biopsy just to make sure that this isn't cancer. I have stayed away from sugar and all spicey foods, changed my toothpaste, drink nothing with sugar in it and I still have this pain.

I am praying that they will at the least just do it and see what it could be. I have had this for way to long. This all started with a sore throat back in March and then was put on antibiotics and steroids for a month and got oral thrush. I still have the white coating on my tongue but it's not oral thrush as I was tested for that..2 red spots in the middle that have been there for a year and they are more painful and seems to be getting bigger. I also have pain on both sides of my tongue now where it was only one side before. This has now spread to my nasal passages and I have really bad dry eyes and dry mouth a lot also. I have been tested for Sjogrens but it came back negative.

I had a CT scan with contrast so we will see if this comes back with anything here in a couple of days. Just frustrating that no one knows what's going on but I literally don't even want to eat because of the pain. frown
10 755 Read More
Long-Term physical and QOL Issues related to treatment
06-21-2020 10:55 PM
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
0 79 Read More
Oral Cancer Recurrence
06-20-2020 10:36 PM
I'm glad I could you make you chuckle xx
5 588 Read More
Eating, Speech, Swallowing, and Alternative Feeding
06-20-2020 10:35 PM
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
4 338 Read More
After Treatment Issues - immediate post treatment
06-18-2020 07:42 PM
Fantastic news
5 1,053 Read More
Medications, Treatment, Procedures
06-18-2020 07:40 PM
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
2 271 Read More
Introduce yourself
06-15-2020 07:57 PM
My husband who had to take all his nutrition by tube told me that he did feel full and that I had to give him time to let the “food” go down first. So, it’s not as simple as just pushing all those syringes or Ensure and water down in one go.

My husband could not swallow at all after radiation due to scarring in his esophagus. Eventually he got a doctor to re-open his esophagus. Even then, he could only take in soups, tea and food in liquid form. Ensure continued to be his main food. The problem was he developed silent aspiration and the liquid he drank went into his lungs. He ended up with severe cases of pneumonia. The first time he was in hospital for 16 days and the second bout took his life. So, as far as doctors are concerned, losing the ability to swallow is a very big deal. Please let your partner see his response so that he’s aware of the seriousness of the situation he’s in. If he wishes to pm me for further information.it’s fine too.
5 580 Read More
After Treatment Issues - immediate post treatment
06-13-2020 03:57 PM
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. frown
4 556 Read More
After Treatment Issues - immediate post treatment
06-12-2020 12:18 AM
I lost my hearing in my left ear too, well not all of it, but my hearing was very compromised, especially at business meetings. I too had two doses of cisplatin. I bought a pair of hearing aids this past January 2020, which was 10 months post rads. They really helped, although now that it's been 15 months post rads, my hearing does seem to be improving quite a bit with no device. It's just taken a loooooooong time. I am not a naturally patient person, so the recovery time from radiation is challenging to say the least. Wish you the best! It DOES get better. smile
4 564 Read More
Oral Cancer Recurrence
06-08-2020 01:12 PM
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!!!
5 508 Read More
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