I believe I emailed earlier, like last month sometime as a new member about my dry mouth and no appetite. Finished radiation the beginning of August/24. Tried the one medication that was finally suggested and no relief. Tried 3 Rx of acupuncture from a doctor who claimed they had treated dry mouth before and no benefit. Now I am waiting to see a special oncologist who is supposed to have some therapeutic input to resolving my dry mouth and no appetite. I don't know where to check, but I will search, for feedback on my first post about the same

I was diagnosed with stage 2 HPV 16 metastatic squamous cell carcinoma of the lymph nodes and a hidden primary site. I had robotic assisted surgery removing 44 lymph nodes on the left side of my neck where 3 lymph nodes were involved. They discovered my primary site due to a clinical trial using an infusion 2 days before surgery that bonds to the specific ph value of HPV16, and in glows florescent when exposed to a light wave used during surgery. Miraculously, 2 primary tumors the size of a seseme seed were discovered in my left tonsil. So, the surgeon removed both tonsils, the back of my tongue, and a part of my upper left palate. My surgery was done in a different state from where I live and I was returned to my primary oncologist in my home state. Just 5 weeks after my final radiation treatment, I was sent for my 1st CT and PET Scans. It showed an uptake in a lymph node just below the direction (around level 3) and my oncologist was concerned about the findings. Of course, I was scared to death. She sent me in for a ultrasound of the whole left side of my neck. I got the results today and it was inflammation and possible infection my body was dealing with. The findings were that there was no reoccurance, but it does keep my anxiety level very high. I hope that your loved one has a good follow-up. It's unnerving to say the least. Best wishes to you and yours!

Sorry for the delay. Yes, it’s completely gone now.

Hi There,

I am 6 yrs out from treatment and still suffer, and always will, from dry mouth. I not only have the radiation damage that caused it, but I am also missing 4 salivary glands. I have improved immensely since the end of my treatment though. Slow process but my salivary output has gotten much get better naturally, even with just two glands left. The things that have helped me a lot in dealing with dry mouth have been the saliva inducing prescription medication Pilocarpine. I used to take 6 a day, now only 1 or 2. It doesn't work for everyone from what I've read. I also use a Xylimelt every night. It's a lozenge that you put against your gums that sticks while it dissolves throughout the night. Those were game changers for sleeping.

To help manage my weight, I buy Boost Very High Calorie to supplement my diet. 530 calories per drink. It's pricey, but it sure has helped me maintain a healthy weight. It runs about $60 per case (24) on Amazon.

I hope this helps a bit.

I have been out of treatment since 2009...I had primary on tongue with spread to neck times 2...Rads and chemo...Over the years I have had so many issues but most recently, over the past 2 plus years I am getting pneumonia every 4 to 6 weeks. It was at first deemed aspiration because I do choke a lot and aspirate. I have done the gamut of tests, had my esophagus stretched done speech therapy and still every 4 to 6 weeks. I do have severe sleep apnea and sleep with a bipod and oxygen. Pulmonology says there's nothing wrong with my lungs, now they are sending me to ent and functional medicine. I tend to know when I am getting bad so I tend to be able to get on antibiotics/steroids before it shows on X-rays now. I still have 5 lower front teeth that are severely decaying and am in process of getting referral to oral surgery to beg him to remove those because I am concerned that the bacteria is causing this.

I am at my Whitts end...Each time I speak with a doc., I feel that I am being treated like I am a crazy person. They can hear the gurgles in my lungs and do not give me problems about meds. I spoke with the pulmonologist about antibiotic resistance down the line and he said just to "switch antibiotics".

Any bright ideas? I am sick and tired of being sick and tired.

thanks!

I have PVL. I’ve had several biopsies. Mild dysplasia. Started out being observed every 3 months, biopsy once a year. I’m now observed every 6 months. The best person to see in my opinion is an Oral Pathologist. I’m a non smoker. I’m going on 5 years since diagnosis.

Hi Nick,

I am almost 5 years out from surgery and radiation and my dry mouth has improved slowly but significantly. It will never be back to normal but I can tell it is a little better every year. The doctors told me most recovery flattens out around 3 years but everyone seems different. There are dry mouth products, over the counter and Rx, but so far I have gotten along without them. I have seen people post here saying they help.

My first months, I had trouble eating anything dry like a Ritz cracker. But, by a year or so, I was able to slowly work one down. Now, I can eat them regularly. Slower than before rads but regularly without gulping tons of water to help. I also used to wake up with my tongue stuck to the roof of my mouth like Velcro. That hardly happens now.

Hope this helps. Stay safe and keep the faith.

Nels

Hello, old friends -

I am a returning member of the forum - have been cancer-free for 16 years but have a new question:

Does anyone have experience getting reconstruction many years after cancer treatment? I had a successful palatectomy/maxillectomy (and radiation and chemo) in 2009 and have been wearing an obturator since then. Though I was pretty happy with it for the first few years, it has recently been problematic - my swallowing muscles are compromised because of it and I struggle to swallow almost all solid food. I'm eating, but it's no fun!

Because of the swallowing difficulty and also chewing problems, I am considering having reconstruction (fibula, etc?) of my upper maxilla and half of my palate, as well as several teeth. I am working with a terrific prosthodontist who is going to make me a new obturator, but I'm seriously considering doing the reconstructive surgery if it's going to make my life a whole lot better! Does anyone here have experience with this kind of reconstruction many years after their original surgery/cancer treatment? Is it crazy for me to consider [/i]another[i]major oral surgery just to get better swallowing/chewing/speaking?

Please, if anyone has experience with this, let me know how it went for you. You can also PM me if you prefer.

Thank you!
Chrissy

I'm new here. I finished radiation Rx for my tongue cancer August 2nd and, so far and PET scan, I am free of any cancer. HOWEVER, I cannot get riid and no relief at all from dry mouth and loss of appetite. Pre-cancer and a healthy 71 yaar old retired and married male at 180 pounds I can barely get over 145 pounds. Any 'human food' except soft boiled eggs or high caloric blended drinks has no appeal to me at all after the first lor second bite, yuk! Any help or recommendations. Mu oncologist just says be patient plus we tried something called Pilocarpine 5mg times four a day and nuttin. Help!

Nick14

Hello Derek,

Sorry to hear you had a recurrence and woke up from surgery without knowing what was possibly or likely going to be the outcome.

I never would have imagined they would skip over those possibilities when they were discussing it with you before.

I mean mine was tiny, but I told the surgeon I understood things can change when they have you on the table, and I was of the mind to "get it done" whatever it takes, despite a planned very minor surgery in my case.

Now having read your story, Nel's and other's I am trying to catch any possible recurrence super early so the next surgery is equally minor and just another small chunk of tongue.

I would have no idea what to expect for something like what you guys went through, and if my medical team didn't pound it in my head and prep me mentally for what to expect, it would seem kind of like getting hit by a train, getting knocked out and waking back up with half your body not working.

I hope you are adjusting well, living alone and dealing with all of that, THAT I can't imagine. Glad you found some local support, and hopefully you keep expanding that circle of support.

Sorry you have had such a rough go with follow up and post operation care, but that lymphoma clinic and PT sounds like a Godsend, hopefully you can cling on to them and find others like that.

COVID and recovery with all the complications...ugh...I salute you sir! You put up the good fight and made it through.

I hope you readjust and find a good quality of life, Nels talks about how we was able to gradually reclaim a pretty active life and thrive, and can figure out how to remain vigilant, without letting the worry take away from living your best life each day.

Take care of yourself, and I wish you the best.

R/
CQ

Hello M,

I am so sorry to hear of your recent cancer diagnosis and surgery. My SCC was stage 4 on my tongue and in one node. I chose to do radiation and no chemo as recommended by my oncologist. I was told my chances of it coming back dropped in half if I did radiation. I did some research and found a few articles that backed this up. Unfortunately, I do not recall how/where I found them, Mayo Clinic website? or this website or ? or National Cancer Institute?

Sounds like you are aware the side effects from radiation are significant. They are getting better and supposedly proton therapy has less side effects.

I received standard radiation treatment and now nearly five years out have had lots of root canals, starting a bridge install tonight, saliva is enough to eat crackers again, food mostly tastes normal..in other words, I have most of my life back. I feel better than ever, to be honest, but I think that is just because I am more grateful for every day now, and my faith is on full blast these last five years.

Wish I had more info for you on this. Tough decision. I do know of one patient that chose not to but the oncologist was not pushing it and they were stage 1.

Hopefully others will jump in here.

Stay safe and keep the faith,
Nels

Yes my 1st biopsy revealed moderate epthelial dysplasia

(you can search for my post on that and see the verbiage the pathologist used describing the dysplasia in detail or click my username and navigate to all my posts and see it).

2nd Biopsy revealed micro invasive oral squamous cell carcinoma and more moderate dysplasia. Margins not big.

Partial (very partial) glossectomy and 3rd biopsy of excised larger piece of tongue found no further cancer but more low grade dysplasia.

Hi, I am experiencing an issue at the tip of tongue and flap where there is a gap…the other adjoining areas have grown together albeit with some scarring yet the tongue and flap are basically one except at the tip.
Any advice on this is appreciated.
Kind regards
D

Hi Mr Fox

Hope you are well. Any update to your situation as I am experiencing similar symptoms approximately 7 months after surgery.

Thank you